A strange concept post-injury, life ticked away by crossed out boxes on the calendar, reminders scheduled in Outlook, timers, watches, clocks, having to keep lists and lists and lists!
I live in the present, without the capacity to really understand the passage of time well. I can lose track of time quite easily, yes, even years can go by and I don’t really ‘get’ that they have. As my friend, Brother Frank, says, “Time stands still for you.”
Weird to be stuck in a non-time zone of sorts in this fast-paced rushed world.
I was trying to recall events of last year as people do this time of year, another difficulty since I’m present-moment focused now. I’d have to say the defining event was Dad’s open heart surgery which turned into a vigil, which turned into a miracle.
Were it not for the emails I’d written and the notes I’d taken during the whole event, the details would be more blurred than they currently are. To me, it feels like it was years ago, not just this last summer into fall. Life seems to be a river flowing too fast for me.
I have never been one to welcome a new year, more of the melancholy sort looking at the past, but with most of it removed from memory, and no social outings, it is an important passage of time that is spent like so many other days, and has a distant, vague, slight significance to me.
My case is difficult to prove, but honestly, if I had foreknowledge about the accident years ago and the tremendous losses it would cause, I would have called in sick that day, pulled the covers over my head and never left the house! No one asks for this.
Despite the struggle, I pray I do not compromise who I am, who God made me to be, for in doing so, I die a little every time I try to be someone I am not to be accepted and heard.
Tags: mTBI, New Year, proving my case, TBI, time
I have found when something is important, it tends to make its way into my dreams at night. They say when you have dreams post-injury, that is a good sign.
Sometimes dreams are about happy things, like my love for horses, but quite often I’ve found it surprising my Brain Injury gets its fair share of time and attention too!
I have had dreams where I was crying in them, but as far as I can recall, I never have woken myself because tears were falling until early this morning. I thought I had been doing pretty well.
Tags: dreams, living with traumatic brain injury, tears
Back to the Beginning: Lady Liberty, Santa Claus, and the Food Bank (posted Jan. 9, 2009)
I saw Lady Liberty and Santa Claus today, in my own hometown; I didn’t travel to the North Pole or New York!
A local tax preparation agency has a person dressed as the Statue of Liberty out along the main street, waving their company sign. I wondered about the irony and the plethora of jokes I couldn’t think of as she was smoking a cigarette!
It was loud, children and us folks with differing disabilities. I had trouble hearing, and I asked at the counter what to do being new, he said nothing. So there I stood like a bump on a log!
As I seated myself, no one made eye contact with me, I felt invisible. Like it or not, I have to do this, so I waited. I knew to bring ID and a utility bill.
I was called and the man at the counter acknowledged me, asked for my information and asked me questions I struggled to hear and comprehend. He asked if I had any kids, I said I have pets, he asked how many and then asked if they were naughty or nice.
Not understanding and bewildered, I said nice. He said to make sure to ask when I go back if they have any pet food. He said if they have some I can have some. I told him that was a huge blessing, I am relieved and thankful because I’ve been putting animal food on my credit card.
I did get rice and beans which make a perfect, or near perfect protein so I am very pleased to have that. I couldn’t have been more thankful for the blessed animal food. I was needing to get more dog food pretty soon, this will help stretch what I still have.
I’ll have to go visit the food bank’s website to try to figure out what Santa Claus was telling me this afternoon.
I am unbelievably exhausted, and will blog about my trip to inquire about heat assistance and doctor appointment next time.
Tags: accepting help, food bank, getting help, lady liberty, Santa Claus, getting assistance
I had a doctor’s appointment Friday to touch base, guess it’s been a while. She was concerned about prolonged use of sleep meds, naturally I can’t tell you how long (years). We’ll try something else, she wasn’t concerned after I said I only take half each night.
She said she had been concerned I was selling them! Oh my gosh, that caught me off guard and said no way, I need those! I also said I just don’t think that way! If I don’t take one, I will be up for more than 24 hours like happened recently when I tried to do without.
I mentioned applying for Disability, denied the first time, which I understand is common, I said the system is what the system is. She agreed and said with her working at this clinic (community health services with sliding fee scale) for four years, she KNOWS the system is broken!
Instead of waiting to be seen they scheduled me for an appointment that I went to today. I do qualify for a little bit of help, but am grateful for that! I told her I’ve been trying to keep a credit on my utilities and she said that was impressive. I said it’s helpful in relieving stress. Nice to get a little validation.
I went to another food source today since when I signed up at the other place Friday they said there were a couple other places in the county I could go too. I’ll blog more another time, I am unbelievably tired, my brain needs rest.
Tags: brain fatigue, Brain Injury, disability, food bank TBI, mTBI
I did go to another food source last week, the people were very kind, it’s not chaotic like the other place, they have quiet cubicles where they take your information, ask what you’d like in your food basket and put it together for you. How they care for us and the time they take, now that is ministry.
I spent several days making a huge (I mean huge!) batch of burritos using everything in the cupboards, rolling them up in tortillas and freezing them. I’m allergic to wheat flour, so it’s not an optimal situation, but survival.
This man explained each place can give me a food basket once a month, so in essence, I can have three food baskets. Then, once a week, I can go collect what they call commodities. From what I understand those commodities are just a handful of items.
He understood my confused state because his wife has Alzheimer’s, and he didn’t seem to mind writing it down.
That did help for a time, however, I ended up confused again when I went to the original food bank I signed up with a couple weeks ago. I went yesterday morning to get commodities and pet food.
I couldn’t completely let my brain go into suspend mode because I had to be aware of when the called my name.
I was called back with another woman and we go through the warehouse and are asked if we want the things they offer or not. It’s crazy, the time we got back there I had forgotten everything I came for!
When we got to the end he asked if we wanted any commodities, thoroughly confused and overwhelmed, we’d just filled up a box for me to take home. Jiminy! Did I just get another food basket?
It took all I had to thank him and drive myself back home and put the perishables away. I was so exhausted I had to rest!
I am tremendously grateful for the produce I was given this time, maybe I need to go early in the week first thing in the morning for that. Because I juice for myself and my dog who has Cancer, I can’t begin to express what a relief produce is! I kept thanking God! We haven’t juiced in over a month!
My monthly food allotment is only $14.00 and that’s not stretching far at all. Last week I put a lot of groceries for my dog and I on my credit card. It was nice to be able to have milk again! And I won’t have to worry about running out of dog food for a time either, which because of her Cancer, her diet is more restricted and healthier than would otherwise be. All things considered, for the aggressive type of Cancer she has, she is still doing very well. I am grateful.
From what I understand my food benefits will increase beginning next month to $36.00, and that is very helpful. I think the change of my own diet from healthy to processed foods is slowing me down and working against me. I’ve never done well, even in my college days, trying to survive off of fake foods.
I am grateful for the food assistance and food banks. I think I simply do best with fruits, veggies, protein, and no wheat flour!
Something that man said at the other food bank, besides his understanding Alzheimer’s, stayed with me. He said, “Anyone making an honest effort, there’s help for.” That touched my heart and fed my starving spirit.
Tags: food bank, getting help, gratitude, juicing, ministry, mTBI, natural diet, produce, TBI
I’ve not been keeping up with my blog simply because I’ve been overwhelmed with life, surviving, and the typical TBI struggles.
My attorney left the office she was working for and I have to decide whether to stay with her or the office she just left. I emailed the attorney at her old office asking if she’s had much success with invisible disabilities like TBI and if we could meet.
Her office called while I was at work (something new is my trying to work in the office again), and basically I was given the attorney-speak, not really much to give me hope, and certainly not much heart.
I got the feeling I was asking for someone to hold my hand and she said if I need someone to have more contact with, because my attorney is starting a new practice, I may want to stay with her. Wow. Nothing like talking to a potential attorney to make you feel yucky.
I asked if they could help me fill out the disability paperwork and she said yes, that’s something we could do over the phone. I didn’t get the feeling of being supported, and maybe they’re that way because they may not feel I have a strong case. The attorney I was questioning about does have a strong background in neurological issues, but as I’ve learned, that can be a very vague, and not-so-good phrase in reality.
Still undecided, but have to make a decision by early next week.
Work has picked up and my boss has asked I go back into the office to work instead of doing so from home. It’s a lot of stimuli to take in, the office is in their home, so in addition to phones ringing, the doorbell ringing loudly in the office, their renters coming and going, family visiting, etc., it is just a lot to deal with.
I thought I could adjust and do okay, but ended up with a two day migraine which finally gone this morning. I’ve noticed a difference in me, I’ve been so dog-tired anyway with everything else, my survival tactic has been caffeine-powered. That works for a while, and then I crash.
A lower quality diet doesn’t help either, and now my doctor has changed my sleep meds, tonight will be the first night with the new type. And I have been cold, very cold, for weeks, maybe even months, unable to get and stay warm.
I just couldn’t be social at the office, even though I explained the stimuli is too much for me, it’s impossible for people to understand unless I had some sort of visible brain meter people could see on
my forehead that says, “Don’t talk to me, brain budget is low.”
Outside of the grand fatigue, I was apathetic, in short, I wasn’t me. I couldn’t respond well to conversations, every indicator was telling me to go home and rest but couldn’t.
My overdoing it merited a lovely emotional breakdown tonight of those deep, quiet sobs, where a soul cries out from the very core. I am tired. I am tired of the struggle no one sees. I am tired of having to work so hard just to barely survive and live as a weird shut-in that no one seems able to understand.
The loneliness shrouds me like a dark cloud and everything I once had as firm foundation under me is gone. I continue to feel I am free falling, my life completely out of my control. I seem to be able to rise to the occasion, but like lately, run down and then eventually, completely fall apart.
And strange as it sounds, I try to keep a pretty good emotional environment at home for my animals…especially my dog who has Cancer. No pretending, but just trying to be positive for their psyches sake.
Can I tell Disability I cannot work because I suffer such emotional and mental meltdowns? Oh they’ll say I can work and it is just too bad I have to lose my life so I can earn a living. And I wonder about those who are homeless, perhaps they’re more hopeless than homeless because of this dreaded system that strikes at the very souls they’re created to serve and ‘help’.
And I understand why people turn to addictions when life is so unbearably painful. Food, alcohol, sugar, whatever the addiction is doesn’t reject us, it doesn’t tell us what we’re doing wrong, it doesn’t remind us of what we aren’t, it’s always there for us. I understand the power of trauma. I understand how serious all of life becomes and making mistakes can be terribly costly to a person’s life.
I sat there on the couch tonight bawling the entire way through Gray’s Anatomy, not because it had anything to do with the show! I was longing…longing to break through this shroud of darkness that has been my companion all these years. I want to run to that moment when my life changed, and run back through that split second and undo all that has been stripped away.
I want to go back to a life I had some control over, being able to work and provide for myself, to have medical, dental, vacation, sick leave, retirement, and all those things we need so much just for our survival. I want to go back to the days of not having to need medications to get me through the days and nights.
I miss having energy and the ability to feel good. Yes, I understand why people turn to substances, relationships, whatever addiction is a balm for their wounded soul. But I want to know how to live through all this crap. I want to know about making it to the other side, to face the fear and all the ugliness of life and find a way to be healed from this trauma, if that is indeed possible.
I get tremendously frustrated by those in this life who say I don’t look disabled enough, or I need to act a certain way to get my benefits. I can’t act, I’m not here to play games. I have good days and I have terribly miserable days and it’s these miserable days that are piercing reminders of my injuries and this prison I fight so hard to live with.
I have lost a lot of friends, family members, and basic folks who supported me before all this because I harped on and on about my miserable days which turned into months which then turned into years.
This ain’t Hollywood!
And I don’t look any more disabled than I look Cherokee or Irish, both which I am by blood!
I said years ago people needed to stop asking how I’m doing because it’s all bad news.
But yet even in the struggle when I’m sure I can’t stand one more minute I know my struggle isn’t just about me – it’s so I can understand others. I know it’s no cruel joke or way of God to teach me, I don’t believe God is that narrow-minded to injure one and not another.
Sometimes I think my life is pretty well summed up by “It’s a Wonderful Life.” Sometimes I’m like George Bailey who wants to die because the pain is all consuming, and then there are those rare moments where I cry out, “God, I want to live again.”
But even George Bailey needed some help to get back on his feet again…
Tags: fatigue, finances, future, mTBI, needing help, PTSD, stress, struggling, TBI, uncertainty
Back to the Beginning: Shopped Out! (posted Feb. 15, 2009)
I joyfully stocked my fridge, freezer, and cupboards with familiar foods, higher in protein, lower in fat and sugar, even fresh produce (yes, I get VERY excited about being able to have produce, it rocks!!)
I managed an unexpected trip to Costco today as I returned from picking up some free hair and lotion products from a kind Craigslister. I’ll use what I can and glad to donate the rest to the food bank. (She was pleased I would be donating them too.)
I find I have much lesser realm of making a difference, but I have to, it’s oxygen, energy, nourishment for my soul.
Seeing the needs of folks at the food bank first hand, I know and see their plight. Many homeless, some addicts, some disabled. I’m not to judge, I’m just grateful and thrilled to give when and where I can. It helps me feel more useful as an outsider in this world I live in.
Still want to contribute, still striving to make a difference. That’s my passion, to live an honest life that matters.
At any rate, all that shopping is NOT something I want to do again any time soon! I was able to stock up on paper products Costco had coupons for, as well as the precious kitty litter my furry feline friends need. I think because my Dad was of the Great Depression era, nothing unnerves me more than bare shelves. Comfort for me means having enough of the basics to get by.
Even though I was within a block of Circuit City, I completely spaced and forgot about going there, which is fine, I probably would not have been able to ask what I needed to anyway. Maybe tomorrow. I need to get this resolved, I’ve not received any work.
Despite my strange sleep pattern and sleeplessness, I’m making myself get up with the alarm, and awake or not, I’m on the treadmill to get some exercise!
Blessings everyone, I’m off rest, maybe, hopefully, get warm! The heat is on and I still have my coat on. It is a question I may pursue one day why we with TBI get so terribly, terribly icy-cold-blood-in-my-veins-can’t-get-warm-kind of cold!
Tags: giving, gratitude, groceries, healthy food, helping, mTBI, TBI
Home Ownership and Philosophical Ponderings (posted Feb. 21, 2009)
My mind, as much of our nation, and world, has been focused, still, on housing.
Last week I heard back from one of the few people I inquired of regarding housing resources for the disabled, and he gave me some links to check out, but all in all, after all my searching, praying, and hoping, my hope wanes.
It just seems this is part of the path we folks with any sort of illness, disability, or any other sort of thing which takes us out of ‘the norm’ deals with. Most everyone with TBI loses everything, I’ve heard from many, many people yet, in my head, it doesn’t stay said.
I guess it doesn’t set well with me because we’re taught to dream. We’re taught home ownership is part of the American Dream…and no one said there were stipulations or exceptions to that dream!
Even the Bible says without a vision people perish. We all need something to look forward to, we need to have hope for tomorrow.
It seems those of us who need to have the stability of home the most should be able to have that need met. I need peace, quiet, an environment I can control. My home is my everything, it is my work space, my gym, my church, my world. I need special accommodations, labels on drawers and cupboards, proper lighting, and the list of needs is really endless.
Who decides who gets to own a home and who doesn’t? The person in the million dollar mansion and the person in the tiny, dilapidated apartment have the same needs. Everyone has to have a place to live. Some live in luxury while many, many others live in constant strife. Why is such a basic need so terribly difficult to fulfill?
If man is indeed created equal, we have equal rights, why doesn’t that extend to economic circumstances, dignity, basic needs like a home of our own?
Can’t a person who wishes to be true to her heart, values, beliefs, get the help she needs? I am fully aware of people who cheat the system or do whatever it takes to remain comfortable, but there’s something in my faith and conscience which refuse that idea entirely.
What about the folks who have no desire to cheat or steal from the system?
A person can do all the right things and still end up losing everything in the end. Why in the world is that okay? Why do we allow that to be okay? I’m not the only one.
Tags: home, home ownership, hope, hope fading, housing, mTBI, philosophical ponderings, questions, Realities of living with Traumatic Brain Injury
Back to the Beginning: EXCELLENT Brain Budget Analogy from rehab (posted Feb. 22, 2009)
[I am grateful to be able to re-post this. When I had it on the original blog it received a lot of comments and folks said it was very helpful. I hope it is helpful to you too.] :)
(Posted with permission. If you share this helpful document with others, please give proper credit to the authors and do not alter document in any way. The following is copy written material. All rights reserved worldwide.)
by Social Worker: Sharon Feeney, LICSW
and Occupational Therapist /Support Group Leader: Janice Worman, ORT/L
When an individual sustains a brain injury, function is decreased, especially in the areas of planning, sequencing, and initiating. These changes influence how one accomplishes everyday activities, interpersonal relationships, and success at school or work.
People are generally able to resume some activities and life tasks: however, how much they can do and for what length of time can have limits. Following a brain injury, one’s brain often is ‘working’ 2-3 times as hard to achieve the former results, and thus is subject to fatigue.
Following an accident the brain is frequently more sensitive to surroundings (such as bright lights, noise, and movement) which may add to fatigue and overload. For example many clients share about the over stimulation that happens when they attempt grocery or mall shopping.
Their brain is much less efficient at filtering out the non-useful stimuli of voices, blinking lights, moving people and the sheer mass of products to choose from.
Home disorganization and clutter also deplete one’s brain budget. Worry, anxiety, or frustration subtract from one’s reserves as well. Describing and recognizing these changes can be very difficult for those experiencing it.
To simplify the concept, we use a Brain Budget Analogy.
For example, if one has $20.00 to spend per day (or 20 units of brain energy), one must use the money or units efficiently to avoid negative consequences. After an injury, it may take more money or units to complete basic self-care tasks.
Thus, less money is available for work, family, or community activities. When a person ‘spends’ most of their budget in the first few hours of the day, their function usually diminishes.
Survivors have described this as “going blank,” temporarily “forgetting how to get home,” “difficulty making decisions,” “a sense of not being able to process what is happening around me,” and “an urgent need to sleep or be in a quiet space.”
With rest, their brain is able to renew. Budgeting and planning ahead is useful in keeping activities balanced and creating quality in one’s day.
While everyone experiences brain fatigue at times, the impact on those with brain injury is much greater. Continuing with the Brain Budget idea, if they use up their budget and “go into debt,” the recovery period may be several days.
While experiencing brain fatigue, one more readily becomes irritated, upset with self or others, and much less able to follow through with tasks or goals.
Our clients tell us that the Brain Budget concept helps them to look at their activities and schedules a week or month at a time. They strategize how to best use their energy and are able to plan breaks between demanding activities.
As they establish more organization and routines, less of their budget is spent in those areas, leaving more available for work, family and spontaneity. The Brain Budget is also a clear way to explain their challenging situation to the people in their lives.
While it is an ongoing process (taking practice and patience) our clients report the Brain Budget tool works.
It empowers them in redesigning their lives.
Tags: Brain Budget analogy, brain fatigue, dignity, emotions, empowerment, independent living, living with traumatic brain injury, pacing and planning, Realities of living with TBI, TBI
Back to the Beginning: Hit and Run (posted Feb. 25, 2009)
A funny thing happened on the way home from Brain Injury support group tonight…
Driving home near our local college, I felt this strange big bump. I looked in the rear view mirror, there was no one directly behind me, then I looked front again and out of the corner of my left eye I saw this large pickup truck trying to be where my car already was! The turn right front signal on, he/she must not have seen me at all.
Stunned, I slowed and then tried to pull over into the bus depot to get out of traffic but they kept going! Oh my gosh! I rolled down my window to try to get to where I could yell at her to pull over but couldn’t get in that position.
I then scrambled what to do next? I tried to get a pen so I could at least write down the license plate, I knew I probably wouldn’t be able to remember the license number. I thought it bizarre he/she did not pull over and exchange information. I couldn’t find a pen in the dark, and thought I should call 911.
I stumbled with my phone, not remembering I had it on speaker phone earlier today. So had to turn it back to normal. I dialed 911, they answered on the first ring, I said I had just been hit, the person wasn’t stopping, and I was trying to relay the license plate as I got behind the truck and we were now at a stop light.
I didn’t know what else to do other than follow the truck! How could you hit someone and not know? Then I was concerned this person maybe driving under the influence.
It was hilarious me trying to give locations, drive, answer questions, multi-task! My hat’s off to anyone who can do all those things at once. I still had my window down for several miles! The dispatcher asked for make and color of the vehicle, my vehicle, my phone number, if I could see if the driver was alone or if there were others in the truck with him/her. It was dark out, I couldn’t see into the cab of the truck. I could tell the make and model, color, and license.
I told the dispatcher I couldn’t follow them far as I was nearly out of gasoline! The truck went onto the freeway and it was there officers caught up with us. The dispatcher told me to turn on my emergency lights, leave room between me and the truck and pull over behind the police car, and stay in my car.
In the matter of a few moments three police cars where there with flashing lights.
Shaking and now pulled over, I got my driver’s license, registration and insurance information for the officer. He didn’t have to ask me for it. Funny, I had just cleaned out and organized my wallet last night so it was all there, neatly organized for the first time in ages.
They asked me a lot of questions, like where the happened and all. I asked if the driver knew she hit me. The first officer didn’t know. He did say there was obvious damage to my car where she hit me. I jokingly said, “Gee, I’ve always heard it’s one lane per customer and I was already in my lane!”
They asked if I had tried to stop her and I said yes, geez, wouldn’t that be all I need, for this to somehow get twisted to not only am I the one to get hit but now I’m responsible for the other driver not knowing she hit me?! I did try to get her to pull over.
One officer was relaying information to another in the patrol car in front of me and they were laughing, I thought this would be one more funny story for them if they ever decided to write a book about the things they see.
I did ask another officer if driver knew they hit me – get this – she said she “thought” she had hit something but couldn’t stop because of the traffic. The officer asked me where this happened, I said right in front of the college and he laughed saying she drove 7 miles! This happened downtown and we’re now on the freeway. Hmm! He said she’ll be charged for hit and run.
I thanked the officer and told him I struggled to multi-task and he said they do it all the time. The officer who gave me a copy of the report said it’s clear she hit me, he said she did a good job tire swiping me like I was in the Indy 500. I laughed and said, “I don’t think so!”
Dang! Isn’t that something? I finally stopped shaking some time later, and realized how my entire body tensed up. Those are some familiar feelings I’ve long forgotten.
I stopped at the gas station before heading home and got a good look at where the tire streaked across my driver’s side door and a bit of the area behind. Wow. I shook my head while putting gas in the car. I haven’t been the cause of a single accident, but I’ll tell you, this makes me consider, if even only momentarily, giving up driving!
I can still feel the tension in my neck and back, wow, that old familiar pain, isn’t it interesting how a body remembers? Interesting that old familiar feeling I noticed while pumping gasoline, how I wanted to throw up.
Thinking about the simple decisions I made tonight, if I’d only stopped to grab something to eat, maybe this wouldn’t have happened, or whatever, but I just wanted to come home, feed my animals, and watch the Biggest Loser!
Looking at the report, the pickup driver was quite a way from home, she lives at least in the next county, not sure if it’s one or two counties away. Thinking back on it now, I’d imagine she wasn’t from around here or she would not have taken the long route heading south through town to go north on the freeway. Who knows, maybe she was talking on her cell.
I’ll take some pictures tomorrow in the daylight.
Tags: auto accident, hit and run, TBI, new injury
Back to the Beginning: Support Group Topic Mood Swings and Suicide (posted Feb. 28, 2009)
With the excitement of the hit and run Wednesday night, I did not wish to overlook the important support group we had.
The topic for the night was Mood Swings. The Occupational Therapist started by sharing some sad news. A group member, in her second year post-injury, committed suicide.
It was ironic, the OT said, the subject for group was Mood Swings, this dear soul suffered from, according to her husband, he thought she was doing better. He came home from work and found her unconscious.
Lest anyone not take Brain Injury seriously or choose denial, the truth stands for itself. Any time I hear of suicide after trauma, it pierces my heart. I took a deep breath to help myself cope and let the words we were hearing sink in.
I pray for her family, for healing, that this will not begin a legacy of suicide in her family.
The Social Worker said she will be holding a special session on suicide soon, since we with TBI are so very susceptible.
We talked about what causes mood swings, how to try to self-regulate, which is difficult in the moment. Someone mentioned the gate keeper of the mind not being on duty anymore – something many were in agreement about.
Triggers mentioned were fatigue, hunger, over stimulation, irritability, overwhelm, depression, frustration, weather, hormones and anxiety. Often in these moments we can slip into words and behaviors we would not do or say before.
We shared strategies in hopes we can improve our awareness over time. As the person above said, it’s hard to do when your gatekeeper is away!
Self-monitoring is key as well as having others around us help stay in check. Like the OT says, living with Brain Injury is an ongoing process.
Sometimes there are signs we’re about to get irritated, angry, etc. Some people begin talking faster or louder, some shut down becoming very quiet, others begin to rage. It’s different for everyone.
We talked about medication being helpful, as well as exercise, nutritional supplements, alternative medicine, diet, self-care and taking breaks.
Tags: Brain Injury, dealing with loss, grief, living with traumatic brain injury, mood swings, suicide
Back to the Beginning: Drats! (posted Mar. 2, 2009)
The injuries from Wednesday night’s accident have been settling in as the adrenaline has left the building! LOL. Dang! I didn’t expect to hurt much, how I’ve forgotten this part.
I have to believe there is some greater good for me getting hit not once, twice, but three times in what has it been? Seven years? Yes, seven. I’m going back to the old joke about my car must have a magnet in it! Same car, three accidents, hit by three different women. Weird.
Co-workers are making jokes about me being “Destruction Derby”, which is hilarious if I were the one looking to hit others. Life seems very strange and counter intuitive from the surface.
Back to a flurry of phone calls to insurance agents, giving recorded statements, I still have one more to do with the at-fault party’s insurance and that part will be over. Next it will be lots of appointments, something else I was relieved of when released from care years ago.
Pain and a bunch of appointments equal exhaustion. Bleck.
There’s got to be a spiritual reason for all this. Logically, isn’t it odd I aced Traffic Safety in high school getting the highest grade ever? Had a lot of experience because my Dad taught me to drive and as soon as I had my learner’s permit I drove a lot. I was confident because of my parents’ and my teacher’s instruction.
It’s just odd, to take driving so seriously and be hit so many dang times! I loved driving so much because it was the next best thing to horseback riding!
I plan on going to the chiropractor I’d seen years ago for the first and second car accidents. I must admit it’s embarrassing telling people I got hit again, and the joke now is “I bet no one wants to ride with you!” Ha ha ha!
I am open to more lessons because He who rules the wind and the waves considers me worthy of the storm…
Tags: insurance companies, life lessons, pain, paperwork
Back to the Beginning: Vehicles Down, Pain Up / Dad (posted Mar. 5, 2009)
Could not get my car started today, so missed my weekly appointment and errand time that I look forward to every week. I’d taken the car in before to have them try to fix it, they simply found it wasn’t the starter or the battery, but something in the column that if put in Neutral to start, it would.
I tried that several times, going back to Park and Neutral, and finally had to give up the ghost. I called the auto shop and asked if I could have it towed in today and they said yes. So I called AAA and they came promptly to tow her away.
No telling how much that will cost. I do have a mechanic who is honest and doesn’t take advantage of people which is great.
I had also tried starting my truck, but since it’s been sitting idle too long I suspect the battery is dead. I asked AAA if they could jump that too, but they said they would consider that two of the four service calls I get per year. Yikes! I had them just tow the car in.
I called and rescheduled my chiropractor appointment until Tuesday, the pain is increasing, but this is real life.
My Dad had surgery today which sounds like it turned out okay, my Step-Mom was saying she didn’t know how much more of this she can bear, doctor after doctor appointment. So far so good, I’m staying on the sunny side. If he pulls through this one well, he should be able to walk better in due time. This surgery was bladder surgery, so that’s a tender one.
Dad just kind of takes these things in stride, like his open heart surgery was “no big deal.” Boy was it ever! I think that ‘can-do’ attitude from WWII is a way of life, I’ve heard it from other veterans. They have so much to teach us, and they do by the way they live their lives.
I’m getting a little cabin fever, so will see if I go walking tomorrow how far I will go. The Post Office is several miles away, but I missed my weekly stopping by to check it. We’ll see. It’s tough to walk along traffic because of the noise, maybe earplugs or music? Who knows, maybe I won’t go at all, or maybe fashion out a quieter route if possible.
I’m glad to be within walking distance of the neighborhood grocery store, though. Getting groceries was on my list to do today too. I’m feeling better for being able to juice a little the last couple of days. It’s a treat to have the healing nutrients of fruits and veggies. My dog loves it, it sure helps with her Cancer. She gets all excited!
I googled the map, it’s a 5 mile trip round trip to the Post Office, that’s a pretty good walk. That would be a good challenge for me. Two pretty good size hills. We’ll see how the old bones are feeling in the morrow!
Tags: auto repair, body pain, cabin fever, mTBI, TBI, waiting
Back to the Beginning: Wheels! (posted Mar. 11, 2009)
Brother Frank delivered me safely to the repair shop to pick up my car this evening. He will be having surgery of his own Monday, if your heart is stirred, please keep him in your prayers.
I’m going back to calling the car “The Dent Mobile!” Oh gosh, I haven’t left the house since March 2. Wow, long time of unexpected confinement. Expensive, yes, this car has been on its last legs for a long, long time, but am grateful to have wheels again.
There are other repairs it should have that I’ve been living with, and one day she’ll give up the ghost for the last time, resuscitating will not be affordable or reasonable. I’ll deal with that then.
For those of us with disability, we pretty much live in our own permanent financial recession. I can only hope and pray now that middle class folks are feeling the pinch there may be more compassion and change for those without a voice as a result of this struggle and suffering.
I then was able to get finally to Costco to get some produce (big yeah!), much to my sorrow I noticed my dog’s Cancer is out of remission and she is once again gaining bumps and acting differently. I see a correlation between my being able to afford good food for us (juicing fresh fruits and veggies) and her health. No need for scientific data here, the results are crystal clear.
I have to find a way to be able to continue juicing. It’s tough enough to finally get to where I can no longer afford a raw foods (meat) diet for her as I had been doing in the mornings. The toll on my heart is incredible, she is my responsibility and I believe in being a good animal steward in forever homes…man’s best friend!
Animals love us with their lives, the very least I can do is my utmost in return!
The next step will be to see if I can find freezer burned meats on freecycle or craigslist to help get her back on raw foods. I’ll tell ya, in this rugged patch of disability, there are just things that pierce my heart. [Must change subject, I'm getting misty-eyed!]
I gave my recorded statement to the at-fault party’s insurance, a load off my mind! Fearful I’d forget details I jacked up on caffeine, praying, “Brain, don’t fail me now!” I find those recorded statements unnerving.
I am glad my Dad and Step Mom called this evening to update me on Dad’s condition and to firm up plans for a family gathering this weekend, I had it on my calendar, but not in my mind! Confused about dates as I sometimes get, I wasn’t realizing the 14th is this weekend, just a couple days away.
Tomorrow will be errands like finally getting to the Post Office to check my box (yeah, I’m free! I’m free!) and Friday must be a full day of pretty much nothing but sleep in preparation for travel and family time Saturday.
This will be our Christmas that got canceled as well as a celebration of my Dad’s 86th birthday. One brother is flying in from out of state Friday for this event, hopefully the rest of us will be there. Almost losing Dad last summer after open heart surgery, I hope my brothers will be able to be there and embrace this moment.
The chiropractic exam I’d hoped to have already had to be postponed twice due to the car being in the shop. Guess third time is a charm, eh?! At any rate, I’ll be glad to get checked out, waking up several times from pain is something I’d forgotten about. Getting used to pain during the day is one thing, but wowza, what a rude awakening – terrible pun intended! :-)
Tuesday morning I’m scheduled to take the car into the at-fault party’s insurance company.
Better believe I’m praying for safety traveling in that car again! :-)
Tags: car, freedom, mTBI, update, wheels TBI
Back to the Beginning: Tribute to Ray Hunt (posted Mar. 14, 2009)
Beloved horseman, Ray Hunt, passed away Thursday, March 12.
Many years ago I was able to attend his clinics, always as a spectator, and always there to learn…not just about horses. This type of horsemanship changes human lives too! Ray had a sparkle in his eyes, he was a person you could tell was doing what he loved, living his calling.
Ray was often called “The Horse’s Lawyer” because he spoke for the horse; he saw things from their perspective. Many a time he would be giving a clinic and say, “I’m here for this,” gently pointing to his horse. He was there for the horses, and oh what we learned along the way too.
For his successes, acclaim, and awards, his heart and focus remained unchanged. Though it is terribly sad to see him leave our presence, he did leave his light and lessons. It wasn’t just the horses you’d see relax and change at these clinics, us humans changed too…usually learning much slower than the horses, but oh did we learn!
I respected Ray because he was never out promoting products or in it for money; he was simply, steadfastly, dedicated to harmony with horses, gentle horsemanship.
I always left his clinics feeling better as a human being for having gone, always learning something new about horses or being reminded of the basics. He took time to answer questions thoroughly and never judged a person. He was all about making positive changes for the horses, and the natural result, was always positive changes for their people!
He was stern when he had to be if someone was hard-headed, not because he was unkind, but because he was kind. He couldn’t see a horse (or a person) troubled and leave them that way if they were open to “offering the horse a better deal.”
I’m saying many prayers for his family and close friends. I can only imagine if there are horses in Heaven, Ray is getting to see the fruit of his labor! He is finally seeing the unending impact he has made in their lives and us humans too.
I imagine God has a special place in Heaven for those who have taken care of the Maker’s animals. I can only imagine his welcome to Heaven, “Well done, good and faithful servant.”
Ray will be sorely missed; he was truly one of a kind. I’m thanking God He gave us Ray in the first place. God bless you, Ray, your family and friends. What a remarkable life he had and legacy that lives on today…
At the end of every clinic Ray recited this poem from heart (I can still hear his voice!):
The Guy in the Glass
by Dale Wimbrow, (c) 1934
When you get what you want in your struggle for *pelf,
And the world makes you King for a day,
Then go to the mirror and look at yourself,
And see what that guy has to say.
For it isn’t your Father, or Mother, or Wife,
Whose judgment upon you must pass.
The feller whose verdict counts most in your life
Is the guy staring back from the glass.
He’s the feller to please, never mind all the rest,
For he’s with you clear up to the end,
And you’ve passed your most dangerous, difficult test
If the guy in the glass is your friend.
You may be like Jack Horner and “chisel” a plum,
And think you’re a wonderful guy,
But the man in the glass says you’re only a bum
If you can’t look him straight in the eye.
You can fool the whole world down the pathway of years,
And get pats on the back as you pass,
But your final reward will be heartaches and tears
If you’ve cheated the guy in the glass.
(*pelf = money, riches)
Tags: advocate, animal husbandry, gratitude, harmony with horses, horse clinics, legacy of legends, life changing, making a difference, Memorial, natural horsemanship, ray hunt, RIP, the guy in the glass poem, the horse’s lawyer, transforming, Tribute, vaquero horsemanship
Back to the Beginning: Spring Storms (posted Mar. 16, 2009)
While there are buds on the roses, my crocuses have brought hope of the spring, and many other green beauties are beginning to grow, we have had snow. Yes snow. Then sun! Then rain, sleet, more sun, and wind. I don’t think I left anything out of our atmospheric experience!
I don’t think I’ve recovered from this weekend’s gathering with family. I took my car on the ferry, first time in a long time, and it beat walking on and being unsheltered. My youngest brother was not able to make it. It was, like many family gatherings for people, interesting.
I fully expected to rest Sunday but instead had two rush reports to get done and three hours of computer troubles and flickering lights from the storms. Earlier someone called from the church I haven’t attended for years and left message saying church was canceled due to the snow, it was barely after 9am and I had gotten home late Saturday night. Groggy doesn’t quite cover that kind of tired!
Still feeling the loss of Ray Hunt, I had been thinking on my life before the accidents being able to travel three hours round-trip in a day, just to go, and it was not a problem. I miss his influence and, well, I miss my old life too.
Found out today in a brief message from my best childhood friend she is being deployed to Iraq in about three weeks. I sat there shocked, reading and re-reading her email sure I was mistaken. She wouldn’t joke about something like that. She asked for prayers, and I’m all over it, but my spirit is very disquieted.
I’m trying to take deep breaths as many friends and family members do when their friend or loved one is deployed. She was in the reserves and it was my understanding she was retired from the military, certainly I was wrong.
Life is full of uncertainties and there is no holding on.
I tried again to see if my mortgage company has help available via the President’s Home Ownership Program and the message is the same, they’re swamped and they’re going through all loans to see who qualifies. Kind of the don’t call us, we’ll call you message.
Tomorrow I take the car in to the at-fault party’s adjuster. So now, it is time to map out where I need to go and then bedtime.
Tags: change, dealing with loss, holding on, Iraq, letting go, life, mTBI, prayer, spring storms, TBI
Back to the Beginning: Totaled (posted Mar. 17, 2009)
I met with the at-fault party’s adjuster this morning, she was nice. The appointment took a little more than a half hour and at the end she asked if I wanted the good news or the bad news first.
I said yes.
The bad news was the damage covers four different panels and repairing would be more than it’s worth. I could choose to salvage it. It is an older car, and she was unable to find comparables to determine value at that time.
This afternoon I received a call, all told the repairs would be well over $1,400 including over 5 days of rental car time or I could receive a check for what the car is worth. While waiting for the call I hoped it’d be enough to replace the septic line to the house to fix the plumbing problem needing professional help nearly every year.
The car is not worth even a $1,000! To salvage a vehicle it costs $200, they waived that, and he apologized since the accident wasn’t my fault. I said, “That’s life!”
Next I have to get in touch with the DMV to get the salvage title.
I did find it funny after the inspection I ran errands, including McDonald’s drive through. My next stop was groceries so I sat in my car in the parking lot of the grocery store eating and thinking how this McMeal was pretty expensive, I don’t do this often, and how next time I might need a McLoan (LOL!). My rambling thoughts were interrupted when an unsupervised shopping cart hit my car!!!
The first words out of my mouth were sarcastic, “Oh thank you!” I was not pleased! Then I thought, this is the Dent Mobile! The woman retrieved her cart and I waved it was okay.
Maybe it wouldn’t be such a bad idea to donate the car to the Destruction Derby…we know that’d be a hit (bad pun intended!)
I did well getting groceries, getting a lot of produce this time, using coupons and buying things on sale, thank God, there is still a credit on my food benefits card, so I used that. Coupons are allowed when using food benefits, so it stretches those pennies farther and for that, I feel good.
Get this, on the way home past the waterfront, I could tell by the white tail it was a bald eagle swooping down to get him/herself some lunch too. It was beautiful to see one that close.
I wondered driving home just how much we miss in this life because we’re caught up in the struggle for self. I pondered about finding joy in the midst of these ongoing difficult, painful, and uncertain times.
I am reading from an author my acupuncturist mentioned years ago. She teaches us how to minimize our suffering and the suffering of others as well as live with a compassionate heart. It is slowly nurturing my heart to open wider instead of shrinking in the midst of adversity. It is as refreshing as being surprised by that beautiful bald eagle.
I’ve often said, physical pain and difficulty with head injury aside, it is my heart that has taken the biggest toll.
Tags: auto accident, insurance companies, mTBI, MVA, spirituality, TBI, totaled
Back to the Beginning: Natasha Richardson 1963 – 2009 (posted Mar. 18, 2009)
If you’ve watched any news lately, you may have already heard actress Natasha Richardson fell on the ski slopes last weekend and suffered a Traumatic Brain Injury. (Falls are the number one cause of TBI).
Ever since I heard I’ve been praying a lot for them, coming from a place of deep knowing, it is the least I could do. Naturally, as a person with TBI, such stories pull at my heart…a lot…no matter who they happen to.
Brain Injury is odd. One moment skiing, next moment a fall, she joked about it, later suffered from not feeling well, headache, admitted to the hospital and then on life support.
I think the name Traumatic Brain Injury is quite accurate, the trauma does not start and end with the accident itself, it has millions of ongoing rippling affects to the sufferer, community, and family.
She was the beloved wife of Liam Neeson, and mother of their two beautiful sons, daughter of Vanessa Redgrave.
Please keep these folks in your prayers. No matter who is affected by TBI, they need our compassion, support, prayers and love. We who have a deep sense of knowing this difficult path must light the path for those who find themselves in this same journey.
TBI does not discriminate, we are not alone. We all suffer the same, whether pauper or king, we are all in the same boat.
Tags: Dealing with loss, death, fall, liam neeson, natasha richardson, prayers for friends and family, RIP Natasha, skiing accident, TBI, vanessa redgrave
Back to the Beginning: Making Connections (posted Mar. 20, 2009)
In the land of TBI, things sometimes happen and we are unable to make the connection. Somewhere between experiencing an incident or series of incidents, having an inconsistent or lack of memory, and not having a sense of time, it can take a while to put the pieces together.
I had a dream Wednesday night I was telling the chiropractor about a series of little incidents I didn’t figure were related.
Even though I saw this chiropractor for my last auto accidents, I had some anxiety about my Brain Injury being accepted and here I was dealing with it in dreamland! Odd, she accepted it before, as she had a person working in her office who had suffered a Head Injury, but that was then.
Everything told her in the dream had actually happened in real life since the accident on 02/25, it took me this long, and a dream, to make the connection.
I brushed it off that I fell after running up the stairs, turned the corner, got distracted by my dog at the bottom of the stairs and tripped over my own feet! I caught myself with my right hand on the railing and left hand on the guest bed. One foot literally on top of the other, my weight fell on my already injured shoulders and unsuspecting right knee! It still didn’t dawn on me after my knee hurt for what is probably now…weeks?!
I didn’t make the connection that I was not able to trust my balance, my legs felt heavier and when I go up or down the stairs, I wall surf and hold the rail, certainly not running like before this accident.
I didn’t make the connection that I’d gone to Costco, I was able to buy jam and I was thankful, I remember saying “Thank you, Lord!” at home putting things away…when I dropped it! Gasp!
Fortunately it landed in a cardboard box, the jar did not break.
I didn’t make the connection when making tea the other day I completely forgot I turned the stove on high and then came back to my office, with the heater in the office blasting on high, I heard an odd sound. Instead of thinking to turn off the heater, I went downstairs to find the tea kettle boiling completely forgetting of the other fire hazard I’d just left in my office.
I didn’t make the connection when decluttering my headboard and plugging the alarm clock back in that I managed to pull the metal lamp off somehow and it fell flat on the top of my head. That hurt for a long time, even though I applied ice immediately.
I didn’t make the connection when trying to write I was struggling with spelling and the placement of letters (thank God for spell check!)
I didn’t make the connection when even talking to my dog I was meshing words.
I didn’t make the connection until today when I realized I’ve been cold every day, and, strange enough, I’ve probably cried every day since the accident. Gee, and I thought being able to cry again was a good thing!
I didn’t make the connection because even I forget that Brain Injuries make up new rules with each new injury, and they often leave us hosts bewildered and confused, and usually the last to know!
As an act of courage, I asked my chiropractor today if she would refer me to my Neurologist. Our conversation yesterday about healing and getting better didn’t leave me with a lot of confidence she respects the rules of the road when it comes to TBI.
She said she thought it would be good to have documentation and have my concerns addressed. I shared a little bit more about what my life looks like (no social life, work at home, the future if I get to go on Disability, etc.) and said while I do get the positive thinking and energy, I’m unable to change this Brain Injury, I’ve tried!
Part of me, honestly, is petrified to enter back into this world again because as a result of the deposition my ex-boss/ex-chiropractor gave at the time of settling the two auto accidents, my Brain Injury was thrown out entirely. It is painful to have to go back to that memory again. That devastated my life. I wish the truth could be shown, really I do.
No where in that deposition was he questioned as to why his wife had to come in and help me do my job after my car accident. Their theory was I changed after I broke off an engagement and that I chose wilful insubordination! Ouch. That is SO not me! Why in the heck would I choose that when
I’d just bought my first house and my life revolved around my job?
Enough reminiscing of that painful story line. This is the path I’m given for a reason I do not see. May a greater good come out of this than I can possibly fathom!
I have to take it step by step and see what unfolds. This certainly throws a bit of a distraction into the mix of my working to save my house.
More shall be revealed…
Next week begins the first full week of chiropractic appointments, a massage, and seeing the Neurologist, not to mention Brain Injury support group. Oh shoot, looking at the calendar, I have a mammogram next week too. I’ve got to put all my appointments on the calendar to make sure I’m not trying to unknowingly clone myself by being several place at once! :-)
Taking deep breaths in, deep breaths out!
Tags: connections, memory, processing, Realities of living with TBI, TBI
Back to the Beginning: Respect Thy Brain (posted Mar. 23, 2009)
While lying in bed this entire weekend due to a cold bug, more of reality has dawned on me following that little bump that happened to my car last month.
Feeling terribly run down last week, noticing an unusual amount of ongoing irritability toward my dog, I realized I needed to get myself together…she hadn’t suddenly changed, I had! I’m not treating my dog like she’s my best friend!
Friday night, I decided to hunker down, put in the earplugs, take my sleep meds and recharge these over run brain batteries. In the middle of the night I was woken by her barking and barking non-stop.
Naturally I yelled at her to quiet down, but she would not.
I looked out my window, and despite being blocked by fencing, trees, and a steep embankment, I saw different colors of flashing lights and noticed everything was very, very dark.
My dog would not settle down, once I removed the earplugs, I heard someone coming onto my property, going into the backyard, and flashing a flashlight into the sky overhead. I could hear his radio making noise. Being the good protector dog she is, she was telling me, “Intruder! Intruder!” And me, being the belligerent human until I understood, kept telling her to quiet. (Oh the patience animals have with us…)
It turns out I slept through a pretty big car chase and crash. The police had been pursuing this person who had been driving recklessly, rearranging some of the landscape. It must have been a pretty high speed chase to take down a power pole. The man’s car was on fire, he was pulled from his car and taken to the hospital, the car fire safely put out.
The road was then closed and we were without power for a long time…it’s always a long time when you have no heat or Internet! LOL! I’ve yet to hear more about the man in the accident, last I read, the authorities were checking to see if alcohol was involved.
I didn’t go check things out in the daylight, I stayed in bed with this head cold realizing it’s probably been my overdoing it that merited me this cold in the first place.
I have to go back to one of the basics of Brain Injury which is honor or respect thy brain. As I read in “Brainlash”, the brain will ask you nicely to rest once…then it will make you!
I realized I was extra tired after the crash but kept adding a little more caffeine, after all, I was just a little over tired, or so I thought! And yes, the daily crying thing is still present, and that, is a big sign to me now, to rest, my brain is tired.
Oh – and I nearly forgot. In the early hours of Saturday while the power was out and I was up, I decided to light some candles. Granted, at this stage of TBI I’ve learned no open flames. No problem, I thought.
So I light a candle in a glass and from that I light a little votive candle, go to place it in its glass container and I dropped it! Gasp! God must have been looking out for that driver and myself because it was picked up before it burned anything. Geesh! This dropping stuff all the time now is something else.
Yes, I am being careful, and praying for my own safety and for those who will, by the natural course of things, join the ranks of us TBIers. We have a lot of people to be praying for. May God protect us, and our loved ones, keeping us from our own harm, and the harm of others.
Life – what a trip!
Tags: brain fatigue, dropping things, living with traumatic brain injury, needing rest, rest
Back to the Beginning: Neurologist (posted Mar. 26, 2009)
Met with the Neurologist today and he pretty much summed it up that often times when whiplash is involved in an accident, Brain Injury can occur too.
He believes my dropping things and balance issues, along with other cognitive things I’ve noticed are indeed due to injury to my brain. Funny he mentioned starting with acceptance since I really didn’t think it was that big of a hit.
I have an MRI scheduled for Monday to see if there is damage or bleeding in the brain, and blood work to get done today to check for B12 levels.
I tried to find the clinic to have the blood work drawn, but could not find it. I will try again later, after some rest and mapping it online. The receptionist gave me directions, but heck if I could find the place, and I’m pretty sure I’ve seen it before, I just can’t remember where.
The Neurologist shared about a story he heard of a human crash test dummy and how he’s done all sorts of crashes, slow and fast and is okay. It’s a mystery to him (and to me!) how some people end up with Brain Injuries and others can be okay. Guess that’s the million dollar question!
The Neurologist also suggested something I think is called Neuro Bio Feedback which he was pretty sure would not be covered by the PIP coverage, but may be worth looking into for a couple of sessions if I could swing it.
I’m heading to get some rest, more appointments follow this afternoon and tomorrow. Just wanted to write a couple of things while they’re fresh in my mind.
Tags: neurologist, new injury, reinjury, TBI
Back to the Beginning: Migraine (posted Mar. 26, 2009)
Today started with a sore neck after a night of fitful sleep, a headache started and grew into a migraine. I came home had a bite, took two Tylenol, grabbed my ice pack and laid down. These are different migraines than what I get about once a month. This one it hurt to ice my head -weird!!!
My head still hurts like crazy. Have to get a report done for work as well as get the recycle and garbage out to the street.
It is a strange thing to be in my own home wearing sunglasses because even the natural light coming in is too much. Hopefully any other news I wanted to write about will linger in my noggin for another time.
Blessings and peace to everyone.
Tags: TBI, exhaustion, rest, mTBI, pain, migraine, headache, ice
Back to the Beginning: Long Update (posted Mar. 29, 2009)
I think with how fast last week breezed by, I’ll do my best to just update per day since it’s already Sunday evening and tomorrow starts another week of appointments and head spinning.
Monday with Neurologist:
Dr. said for me to not be too hard on myself, take notes like I’m doing (remembered note pad with questions) and work on acceptance. He said the emotional roller coaster is Emotional Lability and I can double up on my meds the next couple of weeks.
Tuesday, phone conversation with at-fault party’s insurance adjuster:
Until speaking with this person I’ve had absolutely no qualms with the insurance company. He did say a couple of things that caused me concern and downright worry about my being taken care of and not facing huge bills.
Knowing insurance companies do not wish to pay and they can deem what is “necessary” and “reasonable,” my concern grew.
I then called the Social Worker at rehab, also spoke with a friend and pretty much concurred I will speak with an Brain Injury attorney, at least for a consultation. This accident could cause huge debt if the insurance company backs out of paying.
Wednesday was appointments, rest, and support group later that night. Thursday, more appointments, more rest.
I had my first therapeutic massage on Friday with the massage therapist who specializes in orthopedic massage. She said I walk on the outside of my left foot and use my right foot to power. I thought that was funny, but she was right, I tend to fall to the left when I fall. She said I have a lot of inflammation in my neck from the whiplash, in my sitting bones, and there is a lot going on in my right hip. She said my right leg is sore because I’m compensating for my balance.
It was pretty neat the massage therapist said she saw part of a story that morning about how women are more susceptible to concussions than men. She had to leave for work so missed out on it, but how neat is that she’s tuned in to brain stuff?
The chiropractor said something really neat too, that the Chiropractic Association is involved with the Brain Injury Association and has a pool of people they can call on for advice. She said it’s really neat what they’re doing, handing out bike helmets for free and such. She said she wanted to make sure I knew the chiropractic community is getting support from and support the Brain Injury Association. She is very dear, she completely received the comment I’d made voicing my concern about the disparity between alternative and traditional medicine.
I’ve just struggled so much walking back into the chiropractic world when I worked for a chiropractor and was friends with for quite some time until my Brain Injury. They saw the signs but said it was willful insubordination and due to a break up with my fiance at the time. Geez, I was the one who broke off the relationship and I recall saying although it was terribly painful and not what I wanted, I knew it was right because I was relieved. It’s such a sad and tragic time in life, no warning, that job loss was completely devastating. They denied my Brain Injury, yet a patient at the office who had a Brain Injury later told me she knew I had a Brain Injury, she saw it! How odd, these people who are my bosses and friends ‘couldn’t’ see, but she could. It just hurt terribly they considered I had a personal choice in the matter, I was a poor worker, or whatever they had to chalk it up to. (Still such hurt needing healing.)
I pretty much had a lingering headache which sprouted into a migraine on the right side of my head from Wednesday on, taking Advil and Tylenol on Friday helped.
Friday was the mammogram (owie!!) despite my head hurting so much. I just love how they pinch the living daylights out of you in those machines and they tell you to stay still. Uncle!!!
This is an oddity of head injury – there I was sitting in the waiting room for the mammogram and sitting across from me was a lady who had been a patient at the chiropractor’s I used to work for. I remembered her, her name even (she didn’t recognize me), but how weird it was I could remember her from before the accidents, and Wednesday night couldn’t recognize the man talking to me, when or where we had run into each other shopping. Heck, I could tell you who the lady was friends with and probably name the church she goes to. Weird.
After all the appointments Friday and being close to Costco I sat in my car resting after the mammogram and tried to talk myself into going. I just couldn’t do it. I drove toward home and then at the last second decided to go visit a seaside town not far away. It was good to get out into the open for just a moment, feel the stress melt and my heart grow quiet. It’s not very often we get a break from TBI. I noticed looking at one side of the water was fine, but looking at the side where the water was going in opposite directions, well, that made me nauseous! I think if I could give one thing to TBIers, that would be time away from their injuries, time to rest and really rejuvenate.
For some reason, with TBI stress is a bigger deal than before. Is it the ongoing stress? The financial stuff that goes along with it? The uncertainty? Is it the waiting for a happy ending when so much bad news flies around? I’m not sure, but I do know this, I don’t think I’m a TBI survivor, because in a way, that word makes me think of the battle is over. I think I’m more of a TBI warrior because as far as I can see, the battle just never ends.
Saturday was rest and trying to get some house chores done, which reminds me, I put the laundry in the dryer earlier this evening and promptly forgot! Hopefully nothing shrunk! Oh how us TBIers rely on tools, alarms, etc. (the timer on the dryer no longer works…I should know better than to think I’ll remember!)
Must rest for the MRI tomorrow.
Blessings and warm thoughts everyone.
Tags: neurologist, reminders, TBI, update
Back to the Beginning: Going the Distance Proposed Documentary – AWESOME!
(posted Mar. 29, 2009)
I am very happy to share this site with you, briefly searching for Brain Injury, Head Injury, etc., on Twitter, this popped up. It is a proposed documentary on TBI, by Executive Producer Rob Howard, and Director, David L. Brown.
The trailer alone is beautiful, poignant, and inspiring.
At the bottom of the column on the right hand side you can subscribe for updates. I did! I would love to see this come to fruition, touch a lot of hearts, and bless a lot of lives. Awesome!!!
Tags: Afghanistan veterans, auto accidents, beautiful, Bob Woodruff, encouragement, encouraging, inspirational, Iraq, Realities of living with TBI, stroke, To Iraq and Back video
Back to the Beginning: TBI Support Group Wednesday (posted Mar. 29, 2009)
I am behind on posts, okay, actually, I’m behind on everything now.
At support group we watched the DVD “Every 21 Seconds or Why I Scream at the Refrigerator”. It was quite good, I do wish I absorbed more of it than I did, maybe some other time I can watch it again.
An interesting article about the DVD, the filmmaker lives with TBI:
I noticed my balance off, leaned against the wall or the back of my chair for support. Big difference from the last time at group.
It was tough sharing candidly with a couple members I’d been hit again. I said I guess this is just my lot in life. I get the distinct idea this is the school of learning God wants me in.
After the DVD one of the members approached me. He said it’d been a while seen he’d seen me at “Shoporama”. I didn’t remember. I was unable to engage so just sat down exhausted.
Everything takes much more energy now. Back to square one, resting before going to an appointment or group like this, resting after.
Things take longer too. Getting reports done, taking far more breaks far more frequently than before. I struggle to put things in the right spaces, finding I’m getting things backwards, forgetting whole sections, easily confused by what I was able to do before, all taking much longer, and oddly confused by math again.
Will update more after rest.
Tags: DVD, every 29 seconds or why I scream at the refrigerator, mTBI, TBI
Back to the Beginning: MRI (posted Mar. 30, 2009)
I rested before going to the MRI, even my little grey kitty snuggied for a little time before I had to go. Oh the comfort and companionship animals bring.
My brain must have been very tired this morning, as I cried during the little bit of the Today Show I did manage to watch. (I’m having to limit time on the computer and TV, it’s just too much right now, back to the silent world.) At any rate, crying has been an end of the day sort of occurrence so far.
The MRI went well this morning, I’m glad to have that behind me now. It was loud, very loud.
I did have an MRI in the emergency room in 2005, after having company stay with me (behold the power of stress and overload of TBI). I was so exhausted I slept through that one and don’t remember the procedure at all.
I tried to lie still although my body would have mini jolts each time the noise started (this is despite music playing headphones.) While lying there I tried to (ugh, what’s the word?!)…identify (that’s it!) and name the different sounds so I could handle the noise. I called one Jack Hammer, that’s the only one I can remember right now…
I had a report to get done and started on it after I got home, slow going it was. I had to take breaks, one was an hour for an intended nap, timer set, instead of sleeping, the tears came again. I am working on acceptance of this even slower pace, and letting the tears be okay…
I’m planning on getting more rest and/or sleep tonight, maybe up my meds as the neurologist said I could do.
Back to the Beginning: Today’s News (posted Mar. 31, 2009)
My chiropractor said she was thinking of me over the weekend as she was at a conference put on by a Brain Injury attorney and they were talking about whiplash and TBI. She gave me the book these attorneys have written, which I think I was given a copy years ago by our Social Worker, but it touched my heart all the same.
I did find it funny she asked how I did over the weekend and I couldn’t remember! I said I think I did okay…
I said I know of the attorney, he is involved with the Brain Injury Association and is very active advocating for Brain Injury. I’ll tell ya, it feels great to have people advocating on our behalf, this is quite a bewildering world we live in.
I managed to get two eBay auctions listed today I’ve been working on for pretty much forever! I found you can donate a percentage of your auctions to charity and the Brain Injury Association of America was listed so I’m donating a percentage. It does my heart good to give, even if it’s just a little bit.
I’m sprouting a migraine so this will be short. At least this time the migraine is on the left side! Variety is a good thing – LOL! The head pressure, however, is getting old.
More rest for my brain, a pillow and ice pack await!
Tags: Advocacy, attorney, BIAUSA, Brain Injury Association, chiropractor, TBI
Back to the Beginning: Acceptance (posted Apr. 1, 2009)
Being in another car accident wasn’t on my radar…at all!
The other night I pulled out the book “Brainlash” I purchased somewhere along the lines of working desperately to get better after Brain Injury One and Two. Lots of highlighting, writing, notes I certainly don’t remember reading or writing! The author gently points us in the direction of acceptance.
It’s no mystery I’m struggling with this acceptance thing and I need to understand why.
I think it’s because the only direction I had in mind (awful pun intended!) was getting better. After being rear-ended the second time, that pretty much put an end to what had been my biggest fear since being rear-ended on the freeway.
Of the Brain Injury books I’d purchased, I’d only kept this one. Odd. What did I do with the others? Oh, I donated them to the Brain Injury support group library because I thought I was done with them and would like them to be used by others. Funny. Very funny!
I think my focus of moving forward is probably healthy, and probably the very reason I’m stuck accepting this…this….whatever you call it. Setback? Additional injury? Starting over? I don’t know what to call it. I guess I’m just not one to welcome another injury with open arms when I worked so hard to get and stay better. It’s a daily challenge, everything changes.
For now, everything is slower, much slower. I rest before and after everything now, more so than prior to this accident. I rest when I arrive at an appointment, and after when back out in my car. This is one of the areas that feels like starting over. Everything in small steps, not doing anything extra.
I take work in five minute increments and rest when I have to regardless of the work that I do always being a rush. My brain simply won’t let me push through, it makes me rest by shutting down.
I think what the Occupational Therapist at group says is very true, “Living with Brain Injury is a process.” I’ve fought to get better, applied everything taught, and find myself still in this cage. I am frustrated, petrified, and bewildered, again.
I imagine grief is a part of the acceptance too…which is tough, when so much of TBI is like a slow, painful death. I just have to have hope or I can’t face the next minute, hour, day.
Acceptance, acceptance, acceptance…big sigh…and lots of tears.
Perhaps I can let the acceptance be a process, starting where I can, being okay with this one present moment.
Maybe I could begin with small steps and practice giving myself the same compassion I would a dear friend who’d gone through the same. I’d be there for him or her, why not be there for myself…there’s no running away from my own brain! LOL!
And maybe the biggest thing is acceptance doesn’t mean I have to like it at this point!
Tags: acceptance, auto accidents, living with traumatic brain injury, Realities of living with TBI
Back to the Beginning: Photo Sensitivity (posted Apr. 2, 2009)
I may have found a workaround for my light sensitivity or photo sensitivity, as is officially termed.
I think a good portion of brain fatigue can be chalked up to the light sensitivity. I’d cut out TV and was limiting time here even though I dimmed both monitors as much as possible, my eyes were bothering me, tiring easy.
I find for now listening to TV is enough, and “listened” to Oprah this afternoon (with my sleep mask on – it was divine!) I took off the sleep mask at commercials so I could mute them. I imagine I would have looked very silly to an outsider.
It is a strange thing to be sensitive to stimuli now, us folks with TBI often feel a sense of relief when a noise or lights are dimmed.
I realized I haven’t really been opening the drapes during the day, regular daylight seems to be too much.
And, I’ve found wearing sunglasses here at the computer seems to help keep my head from hurting as bad. I’m still taking breaks often, which in itself is still so counter intuitive for this ex-Type A Personality!
I’m finding frustration with things not sticking in my head like listening to Oprah, I think that means my brain needs more healing. I even returned the books on CD I’d checked out of the library a month ago. The material I was listening to was relaxing before, now it’s irritating.
And I find it tremendously odd, the crutch I used before to speed up my brain a bit, caffeine, isn’t working at all now. I can’t shake the feeling of wanting to wake up my sleeping noggin.
I feel like I should be wearing a sign saying, “We’re sorry, all circuits are busy!”
Tags: brain budget, light sensitivity, noise sensitivity, photo sensitivity, TV
Back to the Beginning: Panic (posted Apr. 3, 2009)
Oh my gosh! I completely forgot about filing my taxes!!!!
Thank God for Twitter where someone asked if people would be spending the weekend doing their taxes. It didn’t dawn on me until I looked up at the calendar and panicked! Oh my gosh. Bummer about having a lack of memory and a terrible sense of timing.
Life post-injury just feels like a river flowing too fast for me.
I get my personal taxes done by AARP for free, thankfully. I just checked their website and I need to go tomorrow as the closest facility will be closing Monday.
Now the task at hand is trying to find everything I need. Whoa boy, breathe in, breathe out…deeply!
It will be okay as soon as I get everything together and make sure I don’t forget to go tomorrow.
Tags: forgetfulness, forgetting, panic, taxes, twitter
Back to the Beginning: Mind Games (posted Apr. 3, 2009)
Sometimes life with TBI is like being in a bad B movie or some weird music video! What is reality and what is just a weird brain moment or my brain playing tricks on me?
Did I really just do that? Did I really just say that? Where am I going? What did I come in here for? What did I do with that? What was I going to do next? Am I going the right way? What was that?
Life post-injury seems to be full of more questions than I have answers for.
Things like the simple act of setting out a hummingbird feeder doesn’t offer joy at first. Why? Because I forgot I put it there! So when I walked by my bedroom and was startled by that red thing hanging outside the window, it took me a minute to remember I’d put it there and it’s not a person looking in the window!
Or the morning in the shower I thought I saw a spider fall from the ceiling into the shower.
A normal brain is kind of a strange thing anyway, but add an injury or two, and life becomes a little more odd and unpredictable! Funny thing is we adapt to our environment and learn coping skills, and forget them too. It really is like walking in shifting sand.
As weird as these days and events do get to be, I am ever so glad to have found a name for what I experience and that I’m not alone in it. Talking with others, maybe even getting to where we can laugh about our weird symptoms makes it easier.
I jokingly say, “every day is a new day with Brain Injury, and that isn’t necessarily a good thing!” It is not easy, it literally is the fight of my life, but we do adapt.
Tags: adapting, brain games, mind playing tricks, questions
Back to the Beginning: Alpha Dork (posted Apr. 4, 2009)
Making mistakes is one of the humbling parts of life with TBI…though they vary in number and severity. I have often jokingly called myself the Alpha Dork, and well, today it is quite fitting.
I was looking for my cell phone just now, went to my purse where I carry it, wasn’t there, came back in here, it was right here on the desk next to where I set the wireless keyboard down. Oh holy duh!
Taxes are done, I ended up paying which bites considering I don’t make a whole heck of a lot and am struggling to keep the house, with Unemployment taking out their fair share, I thought I was safe.
Not so. I could not believe I had to pay, a shock I was not prepared for.
Glad I haven’t cashed the small check for my car being totaled. And, I think I dropped a pair of sunglasses there too. (I had my darkest shades on and these were in my pocket, dang it, they were my favorite pair too! I will go back Monday and see if they’re in the lost and found. Not the first time I’ve tried leaving my favorite pair behind somewhere. Ugh, (Calgon, take me away!)
My biggest faux pas today was a friend asked me to alter a scanned image of his artwork to remove any identifying information, make it more visible, etc., and send it via email to my friends as an anonymous Easter gift. Oh my gosh, I sent out the wrong flipping image! I sent the one WITH the identifying information he asked me to remove. Lovely…and I was SO proud of myself for getting it sent out first thing this morning when I was SURE my brain bank was full. Sigh.
Oh boy, what a day! It’s tough forgiving oneself when being an Alpha Dork seems to come so naturally and even I’m surprised by my mistakes. We’re a society of over achievers! Gotta try to find the humor in it and know this to shall pass. And people close to me wonder why I haven’t had the same confidence in myself I had before. Are you kidding? I live with me all the time!
Any wonder why we TBIers have a tough time keeping a job? Not many employers are looking for employees who are slow and make a lot of mistakes. God help us! Oh so much of this journey no one sees, yet we look fine…
Tags: alpha dork, forgiving myself or not, mistakes
Back to the Beginning: Curiosities of Brain Injury (posted Apr. 5, 2009)
I am surprised by new symptoms in regards to this newest Brain Injury.
When I lie down there is a noise in my head that’s not quite a buzzing or beeping, it’s more of a steady high pitch sound. If I move too fast lying down, that noise takes the rhythm of my heartbeat making it feel like my heart is in my head. Weird. I finally realized that buzz or sound is with me all the time.
Or if I get up too quickly out of the car or off a chair, wow, my head pounds. That head pressure, what in the heck causes that? All these things have me tremendously curious as to what is actually happening inside my head.
I’m used to occasional ringing in the ears, thanks to TBI. I take that as a sign of overload because it’s something that only happens when I’ve overdone it. That is present again too, more often.
I’m still dropping things. I forgot to mention yesterday while clearing a table here in my
office/storage room, I moved a pretty heavy hand-held bottle opener (in here to maybe sell on eBay). Naturally since I seem to be prone to odd accidents now, it landed on my baby toe I broke last May. Ouch! Thankfully I did not re break it, but what are the odds of hitting that toe, the only one ever broken?
Yes, there are days, and times I feel like I should be sent to the Island of Misfit Toys from Rudolph the Red-Nosed Reindeer! But I cannot give up wanting to live a good life in spite of these deficits.
There’s certainly a distinct change in motor skills in my left hand, something is off with its coordination.
And what about the times my head feels like it’s in a vice grip, what is going on inside then, I wonder.
My balance seems to be better, or at least I think so. I have been practicing heel-toe-heel-toe after the massage therapist told me I was walking on the outside of my left foot and powering with my right. I’m still furniture surfing as need be and can’t take corners fast!
Another odd visual thing, the other day in the shower I thought I saw a spider fall from the ceiling.
Probably not, I never did find the little bugger. I don’t like spideys!
I’m now noticing things in the rear view mirror via peripheral vision while driving. No wonder I’m tense driving, there is a lot of scanning, processing, it takes all my concentration.
I remember with the last Brain Injury asking the Neurologist about mini earthquakes that aren’t happening. I would always look in my water bottle to see if the water moved to know if it was real or not. I imagine Post Traumatic Stress Disorder goes along with car accidents.
That’s another reason animals are a great benefit to folks like us. They can help discern what is real and what is not. If they’re not alarmed, I know I can relax. It makes a big difference!
I’m curious about what causes the nausea that is keeping me company lately. I had a terrible time with that after the accident in 2002, I would be hungry, but the mere thought of eating would make me sick to my stomach. The brain is odd, you would think we need food to heal.
Even with all these odd brain things we experience, I’m grateful to breathe in the peace of knowing I’m not alone and there are actually people out there who understand and do not judge me nor try to change me into someone I may wish to be, but cannot be.
Tags: brain injury symptoms, neurology, PTSD, TBI
Back to the Beginning: Invisible Frustrations (posted Apr. 6, 2009)
Yesterday I took my dog to the beach as it was a gorgeous day here in the Pacific Northwest, the breathtaking blue skies, water, mountains, trees, when it’s nice here, it’s really nice!
The beach was rocky and that took a lot of brain power to stay on the right side of those rocks! Today I paid for it by struggling to get out of bed, exhausted, barely in time for my hair cut, but forgot everything I wanted to take with me on my errands.
And here’s a Brain Injury faux pas for the books, while the hair stylist was washing my hair, I took my head out of the wash basin because I thought she was done, I forgot she had to put the conditioner on my hair! Duh! Wait, brain, don’t leave me now, here in public, in front of all these people!!!
My errands took longer than expected and although I felt okay for the most part, I was pushing myself and overdid it. But it was a nice day! I wanted to be out of the house again. Yes, there’s a price for everything in TBI-land, everything is very costly.
I reminded myself of my dog on her leash, for some reason she seems to think the length has changed and always seems to find the end, painfully, sometimes to the point of choking. She’s a puller and hard headed. I guess I am too. Dang limits anyway!
I got myself home this afternoon and had to rest, no question about it. I didn’t think it would take me long to recharge my batteries, but it did. Several hours and I was still just as tired, unable to move, and I had two reports left for me to do while I was gone. As is typical fashion, they have to get done as soon as possible.
I couldn’t think, so borrowed some energy from caffeine. It helped, but now it’s past 11pm.
Here is the frustration I hit tonight. Beyond tired, having to work to keep my head above water, I didn’t think one report would take me long. My mistake. The house sketch had some odd angles. Okay…um…how do I figure these out again? I swore. I don’t usually swear.
This is something I’d figured out before and the memory of it was completely gone. Oh man, I hate this! I had to go online and look up how to figure out angles. I’ve been doing this job for oh, seven years? I think my analogy of constantly walking in shifting sand is accurate. My brain is anything but consistent, and this is anything but easy.
If a person lack’s short-term memory, gets confused easily, has trouble problem solving, unaware of his/her mistakes, you can probably see the Catch-22 we get stuck in. And it’s an ongoing frustration.
Now you can see why rehab for us takes years and is terribly expensive. In my case, my auto insurance coverage ran out and I was released from care. I wasn’t any where near ready.
I have learned the hard way I can either have a home and a job or a life and a happy heart. These are the tough things no one sees in this path. We must balance everything and everything comes at a cost. Getting on Disability is no longer an option, it is something I absolutely have to do for my survival, yet that is a struggle as well. Between a rock and a hard place is a tough and exhausting place to stay for years.
I miss having a good life, I miss living without this constraining, painful leash of TBI. I miss my freedom. God, it’s a struggle every day that no one sees.
I just want to be free!
Tags: TBI, stress, mistakes, finances, frustrations, hidden disability, invisible disability, short-term memory, survival
Back to the Beginning: A Question (posted Apr. 6, 2009)
Quickly posted this on Twitter:
If you could write anyone or organization to help a disabled friend from losing their home, who would you write to?
I’ll be back on later to catch up with everyone – thank you for leaving your comments, it really is a blessing to know I’m not alone in this journey and we can share our experience, hope, and strength together. I will respond to your comments later.
Thank God we do not go this jagged path alone…thanks for being here dear readers.
I’m off to get a haircut maybe that’ll take some pressure off my neck – LOL!
Blessings, everyone! :-)
Tags: disabled, help, home, housing, mTBI, TBI, twitter
Back to the Beginning: Fail (posted Apr. 8, 2009)
Seeing the word “fail,” “failure,” or the popular, “epic fail,” on websites makes me cringe. I know it’s part of the current culture, a slang word, I still feel quite uncomfortable seeing it because it is a big part of life with TBI.
I spent the day, phone off, sleeping. In that time I received a couple of voice-mail messages. One was my Disability attorney regrettably telling me she received my rejection letter from my appeal.
She said the next step is a hearing in front of the judge and those aren’t available for a year to year and a half before that happens. She said to not be completely discouraged at this point, we have that time to still build the case.
What case? To those outside of me who make decisions that affect my life, I have no case. And to lose, I’ll be in debt to my attorney. The life avalanche never stops, does it? Where is the help and hope for us?
Shocked, stunned, the wind knocked out of me…again. Now what? I feel I am not only physically losing my grip and dropping things, I’m losing my grip on my life, everything slips down another notch and for the life of me I can’t make it stop.
It takes a lot of work to overcome the sense of failure I feel on this journey. A lot of work. Not only do I feel like a failure for many things I cannot control, there are constant external reminders too. I just got an email from a co-worker saying I didn’t pay enough attention to the last report and he could have gotten in big trouble for something I missed. Ouch.
Oh the utter anguish of this constant encounter with failure, and trying to not be such a grand disappointment. My best is never good enough because it’s punctuated with errors I do not know I’m making. I would never consciously choose to fail or make mistakes.
Tags: anguish, attorney, denied ssdi, disability, failure, grief, head injury, loss, lost, mistakes, mTBI, pain, ssdi, TBI, tears
Back to the Beginning: Brain Injury Attorney (posted Apr. 11, 2009)
I inquired of an attorney for this auto accident as I was concerned the at-fault party’s insurance would back out and I would be left paying bills I cannot afford and I’d lose my house.
Life on the edge is not where I prefer to live. I lost my need for speed, excitement, adventure and risk when I was first injured on the freeway in 2002.
The intake call was last week, only a half an hour, but answering so many questions, I slept for three hours afterwards!
Today I spoke with an attorney, again more questions, but it was helpful, as was talking to the receptionist who did the intake. The inexpressible comfort of being at home in the company of those who understand and where explaining ad nauseum need not happen.
At this point it’s just information gathering, but they have been very helpful. I’m not one of those litigious people who look for reasons to file a lawsuit, but this is also my life and I need to be diligent about now and my future. After all, this is the Fight of My Life and I have a new normal to adhere to.
I was so tired this morning I could hardly stay awake and fell asleep right before the call. He was late calling, which was fine, that gave me a few more moments of rest. Still tired am I, but have to focus on today’s house chores. I need to try to get myself organized, the routine I had before this accident was washed away and must still be out on the road I got hit on!
I’ve just got to get my act together, I feel like I’m walking around like a chicken with her head cut off.
The attorney suggested I look into increasing my PIP coverage because more brain injuries means things get worse. And, every time I get into that car I’m at risk of getting hurt. Will look into it, even though money is stretched like it’s rubber!
I believe there is a way through. The house is indeed all I have left at this point and the reality, despite my denial and ardent fighting to make it be another way is this, Brain Injury is my life now.
Dang, I’m a fighter, working so hard to get better, trying to undo my head injuries.
But, I do find if I focus on healing (wholeness of spirit and heart) and spirituality, life doesn’t sting so much and there is both strength and courage to try again.
“Courage doesn’t always roar. Sometimes it is the quiet voice at the end of the night saying ‘I will try again tomorrow.’”
- Mary Anne Radmacher
(Mary Anne’s website: http://maryradmacher.com/ and on Twitter: https://twitter.com/#!/Ma_Radmacher ) She is a beautiful soul.
Tags: brain injury attorney, courage, direction, finding a path, head injury concussion, living with traumatic brain injury, mary anne radmacher, mild traumatic brain injury, quote, Realities of living with TBI, spirituality
Back to the Beginning: Feeling Like the Chocolate Bunny Whose Head Was Eaten First! (posted Apr. 11, 2009)
And the rest of their body is left wondering what in the heck happened!!!
It really is a little crazy when one’s brain takes leave. I am having a heck of a time concentrating, focusing, getting anything done.
I finally cleaned out the litter box Thursday, God only knows how long it’s been. I used to clean it daily! I also took my first shower Friday, I think I took a bath the weekend prior. It’s just a trip to go to marking on the calendar when I showered and making notes to do the things I did daily. Calgon! :-)
Every injury is different and gosh darn it, I had adapted to the last one and was able to function better than I am now.
I hear a constant what I know term as “sci-fi sound” in my ears, not quite ringing, but a steady sound.
My head feels heavy, like if I bend over, it will pull me over as if there is a magnetic pull to the earth.
I did find my sunglasses, thank God! For some odd reason I put them in the second drawer instead of the first drawer where I ALWAYS keep them with my keys Even after going back to the AARP site where they did my taxes and asking them if there was a Lost and Found.
I couldn’t believe it was my lost pair, I studied them and said, “No way!” Yep, the broken earpiece, the missing fraction of lens. I love ‘em! Not name brand anything, but glad to have something familiar back at a time when I seem to be experiencing discovery of new cognitive losses.
What in the heck is wrong with me?! I used to have a daily list I’d adhere to, prior to this accident of course. I just can’t get a grip on what I need to do. Heck, I made coffee like I’ve done millions of times but stood there cupboard door wide open and me staring at the coffee wondering what I opened the door for. Oh yeah, I was making coffee. Geez, my frustration level with myself is high.
I swore again today, I don’t usually swear, I just don’t like it. But I was frustrated with my inability to do something I was able to do not too long ago. Even man’s best friend left the room. Not exactly the better angel of my nature showing.
I’m finding my threshold for doing things ends much quicker than it used to. I used to have to take an hour nap everyday, and if I didn’t, I would pay later. Now, oh my gosh, I have to take breaks tremendously often.
Oh yeah, and I can’t miss the fact that since I made that huge error on the report I haven’t been asked to work on a single report since. If they weren’t friends, oh yeah, they would have fired me long ago.
I can feel my heartbeat in my head, and this ongoing migraine is something else. My balance continues to be off. I tested myself last night trying to walk a straight line like I’ve heard they do for DUI tests. Even with my arms stretched out I couldn’t do it. I would have to have a breathalyzer test!
And such dizziness to boot!
I’ve given up all reading, including the little devotionals readings I did at night before. Nothing is sticking in my noggin. I just have to wait and hope that will come back in time.
Goofy brain symptoms. It one thing to have these things occasionally, but living here is just odd!
Must go rest, am getting the feeling my head is in the vice grip again. Wonder what causes that!
Tags: cognitive losses, living with traumatic brain injury, losing things, mild traumatic brain injury, new injury symptoms, Realities of living with TBI
Back to the Beginning: Understanding this New Injury (posted Apr. 13, 2009)
The last week or so have been a complete whirlwind as I go back into the world of daily appointments, paperwork and phone calls. Migraines, head pain, neck pain, nausea and my eyes hurting have kind of been the battle of late. Not to mention the knock-me-off-my-feet exhaustion. I am learning I have to rest A LOT in order to just get through the day.
I saw the Neurologist last week, the results of the MRI were pretty basic. No tumors, no bleeding, swelling or other stuff that would show on an MRI. He did say I have three herniated discs in my neck. Maybe that’s why my neck still hurts so much. He made that is rather common for anyone over a certain age. That was news to me.
My chiropractor is ordering the MRI from the Neuro’s office and she asked me today if I’ve seen it, I said no. She said she would show me if I had interest in that, I appreciated her asking and I’d like to see my inner self.
As mentioned above the nausea…I asked the Neurologist about it and he said he couldn’t say what specifically causes that. Perhaps this new injury caused something like motion sickness and maybe that is what is causing it.
The Neurologist referred me back to rehab because I want to learn tools to help me get better, especially this dropping stuff and balance.
Today I met with the Speech Therapist, I’m to see the Occupational Therapist, but she’s booked until June! The testing was hard and I don’t yet know how the results compare to prior. I am below the median for my age group which does not feel good, but I’ve been here before staring at a painful truth…I guess seeing the numbers may help with my denial.
At first, I felt that twinge of heartache and managed to not lose my composure and start crying. This is really hard stuff. I would never choose this for myself or anyone else. I’ve said before when going through this process it’s like a bunch of strangers are looking at my chest cavity that is torn open wide and they’re pointing out the things I struggle with and may or may not see.
It is awkward at best, heart wrenching at worst. I was not looking forward to these appointments or this process. My only direction was healing, getting better, not going backwards. Quite honestly, this sucks.
I think part of my painful adaptation to this lifestyle is to put blinders on and distance myself from what isn’t and focus on what is. This accident upset what I knew and am now having to learn another ‘new normal.’
I was talking with the Speech Therapist about the nausea. She said a lot of times with Brain Injury it’s due to too much visual stimuli. She said the OT is their specialist when it comes to the visual stuff, but she said the eyes use up a lot of brain bucks, I think she said it uses something like 90% of the brain budget just for the eyes.
I said that makes sense since my eyes seem to be tired all the time. I said I’ve given up watching TV for now, I even tried to watch a few minutes of the Today Show this morning and it was still too much for me.
I said I’d tried going to the Goodwill the other day, before this accident I had a routine of where I’d look, and what I was looking for specifically. When I was there this last time, I just got that sense of this is not a good idea and I have to get out of here! She said that was probably all the visual stimuli!
Oh my gosh, that makes sense! I had been on the computer a lot the last two days doing research for help keeping my house and the nausea has been huge!! Not to mention coming off another migraine.
She asked how I’ve done going to the grocery store and I told her I have not gone lately. I realized I hadn’t juiced or shopped for a while because the tomatoes in the refrigerator were runny and moldy! Eeeeeeew!
Finally I was able to label the feeling I’ve been having in my head. Aside from the dizziness, I get a swimmy head feeling because I felt it right after the first test! Not quite lightheaded, not quite dizziness, just a feeling like my brain became a swimming pool!
I told her I’m having to rest much more now than before. Prior, I had my afternoon nap at 2pm when my batteries would run down, I’d usually sleep for an hour and be ready to get back to things. Now? Reports are still done in segments with plenty of rest in between so I can function.
She also talked about the neurobiofeedback the Neurologist mentioned in his notes. She said that’s very expensive, but she had a patient who benefitted from it, she doubts insurance would pay for it though.
Because PIP coverage only goes so far, I said I’d like to be able to take with me as much as I can to work on at home to help myself recover. She suggested a website, I think it’s something like mybraintrainer.com (will have to find the note she wrote it on).
She said it’s about $10 for three months and they have a lot of good things for specific brain rehab. That was nice to hear about since I’ve seen the Nintendo DS and their BrainAge for which I’ve drooled for, but could not afford. She said this site is good too, it’s just online, not in a handheld device. That’s fine with me, I’m getting slower at learning technology so not having to learn a new device is okay.
Maybe all this and the body pain will eventually get my brain to understand I have a new injury and I have to adjust. I think I’ve been in the survival mode for so long I’ve just fought so hard to keep the house and stuff I feel like if I let up, I will lose it all.
I think I’m realizing my ability to ‘do more’ is not a possibility and may never be. There still is quite a little go getter in me, but I think she needs to learn to be in the moment and just rest. It’s a matter of delusional control, if I continue to fight maybe I can change the outcome of things?
My non-injured ear is ringing, my head is beginning to hurt again.
Clearly acceptance is a process, still. I think underneath it all, I am overwhelmed and petrified.
Tags: ABI, acceptance, brain fatigue, head injury, head injury concussion, living with traumatic brain injury, lots of rest, MRI, new limitations, occupational therapy, pacing and planning, Realities of living with TBI, Speech Therapy, the fight of my life
Back to the Beginning: “An Injured Lion Still Wants to Roar” – Randy Pausch (posted Apr. 14, 2009)
The above quote was shared on Twitter, it got caught in my heart and I wanted to share it here as an encouragement to everyone, no matter where you are in life.
Injured, ill, unemployed, divorced, homeless, whatever our lot in life, even so, we still want to roar.
Being hurt or whatever doesn’t change our true spirit. This quote struck a chord with me because in this time of my life trying to ‘prove’ this weird disability sometimes I feel as though I do not belong in the well or disabled world.
Other people denying my disability doesn’t make it go away. It just means they need to soften their heart to change.
We all cheat ourselves when we believe an injured, disabled, homeless, unemployed – or whatever(!) person is any less a person for the label and limiting judgment we place on them.
“Label jars, not people.” Labels belong on shelves, in closets, cupboards, or storage rooms, people do not.
Tags: ABI, encouragement, mTBI, quote, Randy Pausch The Last Lecture, TBI, true spirit
Back to the Beginning: Dangerous Mistakes (posted Apr. 16, 2009)
Naps are helpful to recharge a tired injured brain throughout the day. As a person who used to sleep probably no more than 7 hours a night, having to take naps during the day feels really un-cool and weak. So be it, it is what it is.
This morning I got up, fed the animals, checked email and was pretty much done by 8am. I had to rest.
I find one of the oddest things with Brain Injury is the way the brain seems to work against itself in healing. Insomnia is huge. One would think, it’s simple, injured brain needs rest, but the last two nights I’ve been awake into the early hours of the morning even after sleep meds. Prior to the accidents I never needed any help sleeping, ever!
This morning’s ‘nap’ turned into 3 hours and I’m glad I got up when I did. I do have an afternoon appointment, but more so if I hadn’t returned back up here, I wouldn’t have found the space heater still on. The clear fire hazard scares me, and wasting electricity and money disheartens me at a time when money is beyond tight.
Some mistakes are costly, embarrassing, awkward, but some are downright dangerous. It is strange living with yourself when you feel you can’t trust yourself…
Tags: brain fatigue, Brain Injury, forgetfulness, memory loss, mistakes, Realities of living with TBI
Back to the Beginning: I Saw My Brain Today!! (posted Apr. 17, 2009)
I got to see my brain today! My chiropractor let me see my ‘inner self’. I’ve never seen an MRI of my brain and neck before, it was tremendously cool. I’ve seen an x-ray of my spine years ago, but nothing 3-D on the computer like this.
I appreciated the chiropractor saying, “this is your beautiful brain,” when I voiced awe.
I don’t tend to look at my brain that way, it was refreshing to recall the miracle of this gray matter!
I think if I can, I’d like to have a picture or two of my brain to remind me of all I’ve been through and ‘be kind to my mind!’ More of that work on self-compassion and acceptance. I think there’s a part of me that punishes myself for something I didn’t cause and have worked so hard to be completely healed from.
This was just what I needed after a morning of making the same mistake, a little work on the computer, went to take a nap only to return to find the space heater on AGAIN. Once is frightening, twice is insane. That’s not like me.
Harping on myself or letting fear grow over something I’m not aware of will not help. Were it anyone else, I’d offer them compassion and understanding and pray for their safety. Pretty simple. I’d also see if we could find workarounds.
Compassion, understanding, and unconditional friendliness toward myself will carry me through, the negative stuff doesn’t work. I don’t have heart to harp on a friend like I do myself!
I thought it was very nice the chiropractor asked if I wanted to see my MRI. I’ve had one before in 2005 when I had a weird dilated eye after a lot of stress, but never saw that one.
I do have three bulging discs in my neck, none intrude into the spinal cord.
For some reason, seeing the inner self helped me to feel more connected to, and compassionate toward, this brain I can’t control!
A day of discovery – and a lot of rest, and I’m off for more now! Fried brain…maybe that’s because it’s Fried-Day?! ;-)
The week is not over for me yet, got a call this afternoon from the office we have work.
Tags: acceptance, compassion, MRI, Realities of living with TBI, self-love, TBI, unconditinal friendliness
Back to the Beginning: Brain Injury and Work (posted Apr. 18, 2009)
I’m getting slammed with reports this weekend, still up, past my bedtime, having just rested, decided to blog for a quick moment.
My co-workers have dropped off work for me to do and it’s tough to feel that pressure to get things done in such a short time period. Short for me because things take so long to get done, and taking so many rest breaks means everything takes longer!
One of the appraisers is sick with “the crud” so getting things to me this weekend have taken him longer than planned. He said he just didn’t know what to do, he goes back to the office and is so tired, he leans his chair back and sleeps for a couple hours. He’s so tired all the time and needs to take naps.
I couldn’t resist and jokingly said it sounds like my life!
It was kind of good for me to have a reminder how different this life is from the way I used to live, and what everyone else considers ‘normal.’ Heck, I did a little work in the yard, simply mixing up Round Up and spraying weeds, didn’t work long, but you bet I rested before, during, and after.
It is a different life, yet we look so normal. If we have a good day and accomplish much, people think we’re not motivated the next day, lazy, or whatever, when in reality, we are doing the best we can everyday.
Who in the heck would choose this? Whoo hoo! Sign me up, for days of multiple naps, or a long nap, no music, no TV, no noise, no social life, struggling financially. Jiminy!
The appraiser said about the email he sent it wasn’t a d!@# you! It was just a note to remind me when he sees my mistakes. I laughed and said I know, it’s just getting it through to my brain is something else. I used to book millions of dollars in sales in the corporate world, ran a satellite office, and now I can’t do reports right.
Some days I’m on and can do pretty well, but really, most of the time I make mistakes I’m completely unaware of. Heck, if I leave the heater on unattended at home, it’s pretty reasonable I’m making spacey mistakes on reports and in other areas of life.
Something will seem okay or the right thing to do in my mind only to find it’s wrong by everyone outside of my head! We may look fine, but wow, the wires that are crossed most of the time inside. It is frustrating and bewildering. It is a very tough thing to try to build a stable life upon.
Tonight I went to switch a light switch that wasn’t there. Oh my gosh! I lived here seven years.
The brain is an odd thing, and as the old commercial used to say, “A mind is a terrible thing to waste!”
Amen to that!
Tags: living with traumatic brain injury, mistakes, working
Back to the Beginning: How Strong Can I Be? (posted Apr. 19, 2009)
How strong can I be when others point out my faults, I say nothing of theirs…
How strong can I be when others struggle with losing keys, not feeling well, having a bad day, etc., temporarily, but this is where I live daily…
How strong can I be when I see glimpses of the life I love just beyond my blinders and my reach…
How strong can I be when my best often includes a myriad of mistakes…
How strong can I be when I am no longer who I was nor who I would like to be…
How strong can I be when really well-intentioned people offer help and/or advice, but in reality leave me worse off than I was before…
How strong can I be when those same people “try” to help me only to make themselves feel better about my painful journey…
How strong can I be when I’m seen as a project to be fixed, not a person to be loved…
How strong can I be when it’s really not about me, nor them, but simply human behavior…
How strong can I be when leaning on my own strength, understanding, abilities, intellect…
How strong can I be when I let go of all this humanness, limitations, things I cannot change…
How strong can I be when I let go of the struggle and cling to the spiritual…
Strong enough to stand again, dust off, take baby steps, live fully in the moment.
Strong enough to breathe in their pain, and mine, and exhale with thoughts and prayers we all be released from suffering and the root of suffering.
“…I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength.” Philippians 4: 11b – 13.
Tags: encouragement, living with traumatic brain injury, mild traumatic brain injury, open heart, open spirit, Realities of living with TBI, spirituality, strength, TBI, TBI awareness
Back to the Beginning: Work is Done and So Am I! (posted Apr. 19, 2009)
Forcing an injured brain is like making a couch potato run a marathon! It may get you to the finish line, but I doubt it’s pretty or inspiring – LOL!
It’s not often I’m handed a bunch of reports and asked to get them done in 24 hours or less, I usually quote my turnaround time as within 24 hours of receiving reports. But – that was before this last injury, and never a bunch at the same time.
I am exhausted and pushed my little brain to its limits. My brain did not wish to show up, so I bribed it with caffeine. It worked for a little bit, I think, but my brain is just injured and needs TLC not a drill sergeant. Sometimes I wonder what it would be like to be able to fully take care of myself without the bundle of cumulative stress.
This week I have appointments only during the latter part of the week and I am thankful for that. Just getting to and from all the appointments is exhausting and my next big task is to call all care providers to find out how much of my PIP coverage has been used.
I’m neither great at paperwork or numbers, so this will take some doing. The Social Worker at rehab is on vacation until next week, so despite my longing for help, will try this one on my own. I’ve got to get a handle on this.
It’s funny being this tired and so blessed sensitive to stimuli. What do I do to relax? There’s no music on, no watching TV to chill out, no going anywhere. My eyes and brain are tired and it’s been a loud day around the house. The valley behind my house is the main road now that the other road is closed and it’s a nice day, the thunder of Harley Davidsons echoes and at times can actually make things on the wall shake.
Seeing as I spent the last several days with earplugs in, my ears are sore (I took them out sometime overnight).
For now, I can think of nothing else to say other than best to you all for now.
In a parody on the 23rd Psalm:
My brain is my shepherd I shall not want,
and boy, does it ever, MAKE me lie down! LOL :-)
Tags: brain fatigue, Brain Injury, exhaustion, humor
Back to the Beginning: ROCK THE QUO! (posted Apr. 22, 2009)
…the Status Quo. This letter was mailed/emailed today to President Obama and over 125 groups and associations to give voice to The Fight of My Life; Living with Traumatic Brain Injury.
May we, no matter how we have been changed by Traumatic Brain Injury, (veterans, abuse, stroke, accidents, falls, etc.), ban together and make a change for the greatest good and ROCK THE QUO!
“Most people with TBI lose their homes,” I heard time after time since becoming disabled, but no one can tell me why it has to be that way.
June 2002, heading to a volunteer orientation with my dog, Rudy, we were rear-ended on the freeway. Though I suffered bodily injuries, because my spine was twisted, the whiplash would devastate my life.
Bewildered and in incredible pain, I would lose my job, relationships, friendships, social life in a split second wreck I did not cause. I knew I was different; but didn’t know how. I asked chiropractors to refer me to a Neurologist, after the third, my request was finally granted. I had a Traumatic Brain Injury (TBI).
I underwent extensive testing, grueling rehabilitation until Personal Injury Protection insurance ended. In 2003, I was rear-ended again. Back to the Neurologist, I was devastated to learn Brain Injuries are cumulative. I had fought hard to regain my old life to be brought back to this place.
I could joke there must be a magnet in the back of my car, and I sure didn’t get smarter getting hit the second time. Truth was I would never be the same again; a reality that shook me to the core and took until recently to fully accept. Experiential learning over years slowly taught me I could not undo a disability no matter how hard I worked! Expressing this frustration at support group, the
Occupational Therapist simply said, “That’s because you still have a Brain Injury.”
The old me was Type-A, social, loved work, church, the gym, volunteering, involvement with friends. The new me is sensitive to, challenged and drained by activities that energized before. I live as a shut-in, lights dimmed, sounds restricted to the humming computer, refrigerator, heater, and traffic. Once humorous and outgoing is replaced by exhausting concentration and focus on survival
Now it is I who face losing my home to this disability, the very thing I fought all these years. I cannot work full-time, savings are dwindling. My Dad served in WWII, we were raised to work hard and then harder! Hard work and perseverance always pay off, don’t they? I repeatedly hit the plateau of not improving, hopes of returning to work full-time died with some of my identity.
Do all people with TBI have to lose their homes? Do I have to lose everything, lose my animal family, the only stability and comfort known during these heart storms because of something I did not cause?
Can you help? Can we find a way through together? Maybe we can auction something I own or have written, start a fund raiser? Perhaps an organization will be created to keep this from happening to others. I am not the first to experience this devastation…the story of any one of us is really the story of all of us.
This is embarrassing and scary putting myself out there, but what choice do I have? This or lose everything? I have seen how this story ends for too many with TBI. I do not wish to be rich or famous, just have a good life and get back to helping others.
There must be a reason I am in this place, sharing my story, and the story of many others who have gone before me and those who will follow in my footsteps. Having a home of one’s own is a simple, basic human need unchanged by disability. Thank you kindly for listening.
Blessings, Love & Peace,
Tags: challenging the status quo, dignity, homelessness, human rights, making a difference, mild traumatic brain injury, PTSD, raising awareness, Realities of living with TBI
Back to the Beginning: The Places That Scare You (posted Apr. 22, 2009)
Today has been a long, eventful day opening myself up, asking for help from the world. Uneasy am I. Petrified is more accurate.
I’m petrified any way you slice it – of losing my home and pets or asking for help. So, I am curious to see what happens when a person faces their deepest fears in hopes of changing the world not just for self.
I picked up from the library Pema Chodron’s “The Places that Scare You” on CD to try to listen to again. Her insight and wisdom were very helpful prior to this accident, listening to her is like listening to a friend. It is something I looked forward to. I will test my brain sponge to see if I can absorb some wisdom now that a little time has passed since the last accident.
I had some time after the chiropractor before Brain Injury support group today and am glad the idea of going to a park for a walk dawned. I need to get more active even though it hurts and I’m so blasted tired, struggling with ongoing migraines.
I thought I’d been doing fine today, pulled into a parking spot and started crying. I don’t know it was anything specific other than a huge sense of overwhelm, I hadn’t felt like crying, I just knew I was very, very tired and pushing myself to get through the day.
I am beyond tired and still have week ahead of me to prepare paperwork for, and have to force some organization before Friday. I have to have my ducks in a row, it’s for heat assistance that I”m running out of.
No time to rest yet.
Sometimes life forces us to be stronger than we ever thought possible for longer than we ever thought we could.
Tags: facing fear, mTBI, pema chodron, TBI, the places that scare you, traumatic brain injury
Back to the Beginning: Perspective / To Fly Again (posted Apr. 25, 2009)
[A friend sent me this link, it gives you a view of New York, it's a virtual tour of sorts, I think. If you have visual issues or dizziness, this may not be for you. It's a lot of visual stimuli.]
I love to fly, I love soaring skyward into vast beauty and colors, from the first moment I flew to the east coast, once over the fear, and I could see the view, I was hooked, I LOVED it!
A friend on Stumble Upon sent me this link, it’s an aerial view of New York, I’ve never been there, but to me, it’s a virtual journey that still has the power to transform my spirit and help me feel more free.
One of the big bummers about disability is often we lose our ability to travel due mainly to expense, but we also need special accommodations. It is still a dear desire of mine to be able to travel more ‘someday.’ There are places in the US and Europe, Africa, etc., I would love to see. I’d love to go as far as I could to see the lands and meet the people, get a ‘feel’ for hearts around the world. I would love that.
For now, the virtual method will fuel my spirit, giving me virtual freedom. I hope it does for you too. Fasten your seat belts and prepare for takeoff! :)
Tags: Dreams, flying, freeing the spirit, travel, virtual flying
Back to the Beginning: Bad News – Energy Assistance Gone (posted Apr. 24, 2009)
As soon as I learned I was down to a $65 credit balance on my natural gas, I got in touch with the community services to get help. I emailed, they had me call to schedule an appointment.
This is the place where they only open up the phone lines and online scheduling for appointments one month in advance, and you can only schedule on that ONE day for appointments.
Since I already receive assistance and was getting to an emergency place, I asked them if I had to wait or could I go ahead and schedule.
The gal I spoke to on the phone scheduled me for today and comforted me saying if I was getting too close to getting a shut-off notice to let my heat company know I have an appointment scheduled and that would take the pressure off.
So, in preparation, I had to contact the Unemployment Office, get the form filled out correctly (took me a couple times to get information in the right places.) Because this was short notice, I would have to fax it to them, so I went to the community resources office early this morning and asked if I could pay them to fax it. They faxed it and said they couldn’t charge me. I thanked them and went for a walk before my appointment.
On my walk I was grateful for help being available, but asking for help and being in this place are very difficult. It’s depressing and dehumanizing. A reminder your life is spinning out of control and despite your own best efforts, it continues spinning in an unfavorable direction.
I heard and saw two beautiful bald eagles, walked more and returned to the office. Having been a brisk morning, the walk would cost me in brain bucks.
I went back to the Energy Assistance Office to find the open area now a wall with a door and two small windows, we are to check in at the windows which are placed strangely high, and feels like a secure zone than a resource office.
I check in. The gal asks my name again, asks what time I’m scheduled. I’m not on the schedule. I say I can come in later. She said no. She asked for my appointment confirmation paperwork they’d sent me. I hand it to her and she tells me someone will be with me shortly.
Then she announces to the room my name and says I’ve been in before for assistance and I agree.
She then tells me they have no resources for people who are already receiving assistance and I need to try back NEXT MONTH! I tell her I’m almost out of heat.
I sit there in complete shock and don’t know what to do. I’m mad and upset and ask if I can reschedule now, and she says NO, I have to wait until next month.
As if it isn’t bad enough you tend to lose your right to privacy because you’re carrying your life in black and white to show everyone, but to go to all that length to get help and be turned away, oh my gosh.
This was not good news.
I didn’t even get to my car before I started crying. I went to a park to cry more before I went home, I have this thing about not wanting to cry in front of my animals and have them become concerned.
I later went to my chiropractor and the dear receptionist said they got my letter. I’d sent them one too, just as an encouragement to see if I couldn’t make a change. She said she thought it was neat that since I was going through that to see if I couldn’t help others, she had empathy for this process and that was sweet.
At that particular moment I wasn’t feeling like much of an encouragement. I had just had a difficult morning dealing with a lot of the darker feelings of being a person who is stuck between a rock and a hard place. It gets old being here. It gets old waiting on a happy ending, waiting to get better, waiting for a solution.
I understand why so many people with TBI stop praying for a miracle and give up. Systems don’t have feelings. Systems don’t care if you’re going to lose your house, or you’re struggling to put food on the table, or if you have no heat. Systems don’t care if you’re trying your hardest and doing your best. Systems exist for systems.
Having paid some big brain bucks for a morning that turned out to be devastation instead of a safety net, I came home to rest. After sleeping hard, I woke to find I’d left the front door wide open and had no recollection of it. Purse sitting right there. Not smart.
I am not okay and am damned to find out why no one is willing to put in black and white I am disabled so this process of getting on disability can go ahead. Anyone who would think I’d go from being a Type-A to someone who can’t get their act together is just crazy.
I was rear-ended on the freeway for heaven’s sake, and then rear-ended again, and side swiped two months ago. Brain injuries are cumulative! No one wishes I were the old me more than me.
I have two Neuropsych evaluations, I’ve gone to doctors, rehab, support group, I’ve done nutritional counseling and acupuncture at my own cost to try to get better. I have lost my life to something I didn’t cause and stay stuck because of politics and greed.
It is unfortunate I present well, or whatever excuse people need to use. If you look merely at the testing, the documentation shows deficits clearly. The tests just show what I’ve been struggling with. If I had Cancer, would anyone go through the same and say I present well and since I can’t see it, therefore it doesn’t exist?
Just because people choose to not see it, cannot see it or whatever doesn’t make my life any different. Who in the world has the right to judge me without taking into consideration my experience?
This is MY life, doesn’t that matter?
Tags: ABI, despair, energy assistance, getting help, heat assistance, helplessness, mTBI, PTSD, TBI, trauma
Back to the Beginning: Reduced Speed Zone Ahead (posted Apr. 29, 2009)
We’ve often seen the signs, it is easier to take the foot off the gas pedal and slow our vehicle down than our lives.
I am learning a new set of signs for driving my life: Yield (rest, take breaks), Stop (I am too tired, overwhelmed, etc.), Detour (not an option right now), Construction Zone (be patient with self), and
Merge (path ended, must flow with life, choose acceptance.)
It seems for now, at least, about a half a day is all I can manage whether it be housework, work, or errands. Self-care is taking a much higher priority than before. So, pacing and planning become much more of an art and science for survivability, to be able to travel wisely and safely.
I have to go back to the basic rules of the Brain Injury defensive driving road. Rest. Proper diet. Exercise. Hydration. Limit stimuli and certainly manage my stress.
Caffeine doesn’t help spark my brain whatsoever. My Neurologist said years ago when I asked if it was okay to use, he said yes, it wasn’t detrimental or habit forming. It is odd my crutch no longer works. I’m not able to exceed the posted speed limit or drive farther.
I find it interesting the place where I was hit had one of those signs preceding it. The speed limit had been 35, reduced to 30 MPH. I had no idea then what that would end up meaning to my life, and brain.
I have doubled my meds and that helped steady my mood, although this afternoon felt ready to cry, knew it was tired brain telling me I’ve tried to push mileage again today and to yield.
Time to put my brain in park and let it rest…
Tags: acceptance, Brain Injury, living with traumatic brain injury, mild traumatic brain injury, new limitations, self-care
Back to the Beginning: Thank YOU! (posted May 5, 2009)
The tally for the eBay auctions benefiting The Brain Injury Association of America (BIAUSA) was nearly $100! Not bad for a small handful of auctions.
Thank you, everyone, for your interest, warm hearts and ALL bids.
Yes we can make a difference even in tough economic times.
Blessings on y’all! :)
Tags: ABI, BIAUSA, Brain Injury Association of America, eBay, mTBI, TBI, thank you, thanks
Back to the Beginning: Part of Something Greater (posted May 10, 2009)
Several firsts occurred this week – Monday I attended my first Brain Injury conference, traveled, and stayed at a hotel for the first time since the accidents. Because Brain Injury is never predictable, I’m never really quite sure I can do something I want or plan to do.
I used to love to travel for work, I enjoyed flying, staying at hotels, going to training or conferences. So much of that love had been sorrowfully and regretfully given up. It’s of no surprise, returning to my room the first time, I skipped down the hall! It was delightful to feel that spark, so many years post-injury.
A lot of pacing and planning came into play from the moment I received information about my scholarship being approved. Some successful, some not so much!
I hadn’t planned for a migraine, but acquired one on my drive over. I wish I’d planned for more rest the day before and the day after. I don’t think I’ve driven that far in years, either, and something I didn’t foresee as being a big deal since I’ve “done it in the past.”
Driving over I was thinking of this new experience in the new me versus how I would have handled it as the old me. The old me would have found out who else was going to the conference, would try to carpool, share meals together, etc. The new me is devoid of those extras and my main concern was just getting there, and hoping I could handle everything, and not end up missing out due to being sidelined by a migraine!
I did not sleep well that night, waking up every time the heat or whatever kicked on. Oh my gosh, it was very tough to rouse myself in the morning from lack of sleep and migraine drain. Break out my drug of choice – caffeine! Got to extend my brain bucks from the get go!
The first speaker was comedienne Debbie Wooten, a TBI and Polio survivor, she was funny, but also one of us, with great messages that only those who have gone through the trenches can offer up as encouragement to others.
I attended seminars by Fred Langer and Craig Sicilia. Fred had been a nurse for over ten years and had experience with Brain Injury, became a lawyer, but also has a deeper knowledge of TBI because his nephew suffered a TBI while in Iraq.
Craig’s session was about self-advocacy and had two leadership students speak and also had a neat panel set up too. They showed videos and fielded questions, it is very impressive to see disabled students being taken to heart, given advocacy and coping skills, and strength to shine their light in their schools and community.
I used to work with youth groups in church, so the spark of energy found a receptive home in my heart “for sure!” (“For sure” is in quotes because Logan Olsen was on the panel and she delighted my heart each time she said that! What a beautiful spirit she has!)
I related a lot to what Craig was saying about how TBI affected his life, he sustained his TBI in 2005, lost everything, and said this was the most difficult challenge he has ever faced. He does a lot of impressive work with those kids; it was inspiring to see them shine with confidence. The light of those students lit up the room.
I don’t know of anyone with TBI who is trying to get people to feel sorry for them, I think we’re all just trying to find a path through without compromising our integrity or who we are.
By the time lunch came, I could see I was struggling with motor skills, early warnings of brain fatigue, but alas, the Type A personality lives! I had to push through, I didn’t want to miss anything or disappoint anyone for not attending seminars.
As time passed, my walking changed, my body temperature plummeted and though I’d been comfortable prior, was terribly cold, my heart started racing. I asked the conference organizer if they had any rooms left for that night, she said she’d look into it. She said she’d made an executive decision that those living on this side of the state would have one night only.
I expressed my concern, but figured if things couldn’t work out, I’d jack up on caffeine and make it through. I am glad I didn’t push myself. The night before in the shower I’d lost my balance, the morning of traveling for the conference I fell getting dressed.
I’ve always been fiercely independent, so asking for a room took some gumption and risk, and always being the giving type, it was really quite uncomfortable!
The kicker? While I was in the lobby and she was checking on the rooms, I had to hold onto the check-in table because I was the only one standing there who felt the earth move! The last time I experienced that was years ago when I had a lot of stress and ended up in the Emergency Room with one dilated eye. Nothing showed on the MRI then either! But that self-care lesson was well learned.
Much better safe than sorry, they found a room, while it was getting cleaned I found a secluded space to rest. Later I swam in the pool (but I was still freezing!), warmed in the hot tub and helped relieve some very sore leg, hip, seat, and neck muscles. Then, cooked myself in the sauna until too warm. I put in earplugs to help me sleep through the night and worked, yes, worked at resting.
Even with the struggle to get there, and the organizational faux pas that had me upset (no room the first night, wasn’t on the registration list, etc.) I am glad I got to go. Our Occupational Therapist, Janice was there too.
A couple of times during the event I sang the theme from The Twilight Zone to Janice and said it was weird being there because I related so much to what was being presented.
Janice said it wasn’t weird – this is what it feels like to be a part of something bigger.
Tags: Advocacy, Afghanistan veterans, brain injury Washington state, conference, education, raising funds for TBI, soldiers, speakers, students, traumatic brain injury
Back to the Beginning: Getting Sick Can Be Like Brain Injury…Sometimes…
(posted May 12, 2009)
[Written Saturday when I couldn’t yet get back to the computer.]
I feel I can say this because I spent the last several days in bed, days I needed to be working to maintain my house and life. Like Brain Injury, one doesn’t schedule getting sick, it just happens!
My job is piecework, no work, no pay. Talk about incentive! It wasn’t a conscious decision to stay in bed, this virus had me body slammed from the get go! (Ding, ding, ding, “and the winner, in this corner is…the Virus!” And the crowd roars!)
I thought I’d been overtired from the conference and just needed rest. Wow! I could not get out of bed.
It’s a beautiful day outside, warm, lovely. I am in bed, tired of being tired. Not feeling well enough to climb stairs to the computer (my life outside these walls), and if I did, what then? My eyes hurt too!
The neighbor and a friend have been sawing away the annoying elm trees which drop “green snow” as my neighbor calls it, this time of year, blocks the sun from my house the rest of the spring and summer, and then in the fall drops a lot of leaves. When I get up, I will get to see sun on the north part of the house.
Amazing how when you’re sick every part of your body can ache and hurt. Makes me wonder what the bug is doing to my defenses to make it feel like every place I’ve ever injured is getting revenge!
Uncle! Uncle! I give, I give!
I finally got something solid to eat, almost a meal, I think to myself as I’ve been preferring liquids. I look around at my living room and it is decluttered, something we do to help our brain banks. Yes – for us, less is more!
I wonder what will happen to the family heirlooms if I lose my house. I look around and do not find comfort here. I’m a person who needs deep roots, to know from year to year where I’ll be living.
I see life shrapnel of the person I used to be, the person I still think I am, and the person I want to be. Seems the more I need stability that I cannot possibly provide for myself, the less it is available even after asking for help. Tough when my own health depends on it, seeing as this is the second time being ill since the accident in February.
So, with getting sick, I trust the process, doing what I know to do, hoping it’s not the flu, requiring a doctor’s visit and meds that would come out of my own pocket (savings).
I wish the process of Brain Injury was so sure. Trust the process, do what you know to do and you’ll get better.
Sometimes it just feels like I got shorted out of the luck department when it comes to getting better. It’s certainly not for lack of trying! There is a reason for this, it has all passed through God’s hands.
I’ve never met a Brain Injured person who didn’t want to get better. There are many times I cry because it’s just like watching my lifeblood being siphoned out of my drop by drop, every dream I’ve ever longed for in each drop. I would never choose this life.
In order to get to the other side of the pain, I have to cry, write, grieve, pray, pick myself up, dust off and find reason to try yet again.
I am used to being the writer, not the story! I am eager for a happy ending (or beginning) and tired of ongoing struggle. I wonder who benefits in my suffering. Really.
I don’t think any of us on this path enjoy complaining or telling the bitter truths we experience, this is real life and it has the power to pierce a heart with laser like accuracy…not just once, but repeatedly.
I think we’re like the northern side of my house, longing for someone stronger than ourselves, folks who are trustworthy, more able than us to cut away the ugly elm trees darkening and choking our lives, and let in some sunshine (Sonshine?)…
…to show us change is possible, hope is not in vain, resiliency can prevail
…to get back to the radiant warmth of living and thriving as the whole spiritual beings we still are.
Tags: hope, illness, Realities of living with TBI, seeking help, seeking wholeness, spirituality, TBI, trying again
Back to the Beginning: My Personal Housing Crisis (posted May 12, 2009)
These are the roads I’ve been down trying to find a solution to my housing crisis. Speaking of driving and looking for signs as an analogy for Brain Injury, we can clearly see where these roads take me…no where fast!
HUD – last year attended what I was told over the phone was a “Distressed Home Owner’s Class” which could help me in my situation, but when I got there, it was a certification class for bankruptcy, which is what I’m fighting to keep myself from falling into.
I spoke with the presenter one-on-one afterwards, asked if there was help available for folks with disabilities, she pointed to the brochure I’d picked up for new home buyers with disabilities, I should contact them, and let her know what I find out. [Dead end]
SOCIAL WORKER – There simply aren’t resources for people in my situation. [Dead end}
SECTION 8 / SUBSIDIZED HOUSING - The HUD counselor did say one day she hopes the Section 8 will go toward mortgages. [Dead end]
And other than the over twelve month waiting list and no pets, it’s not much of an option. [Road closed]
DVR COUNSELOR – Years ago, when I asked her what other people do in my situation, she told me they lose everything. Ouch. [Dead end off a steep cliff!]
ROOMMATE? – This is a very common, understandable inquiry, not an option. [Dead end]
With limited gasoline in my brain tank, well, it’s easy to see traveling no where fast burns up fuel, stirs up a lot of dirt and dust but doesn’t take me to my desired destination, puts a lot of wear and tear on my car, and pollutes the environment!
I’ve learned a lot of other drivers have been on this same road too and the crash at the end is what
I’m trying to avoid by defensive driving, careful handling, and strategic planning.
Buckling up for safety and praying for traveling graces. Jesus, take the wheel!
Tags: Disability, housing crisis, independent living, Realities of living with TBI, TBI
Back to the Beginning: Desperately Seeking Solutions (posted May 13, 2009)
The “Rock the Quo” letter campaign continues as I question what happens to disabled folks when they’ve lost ability to fully self-support and are looking at losing their homes.
I’ve received some replies, most offering understanding, empathy, similar experience, but no road through yet. This is new territory for me, and I guess, for all of us.
I’ve lost so much on this path already, have adjusted, adapted, grieved, cried, and let go over and over again. I need more of a life than this, I’ve always said it’s my spirit that has suffered the most (way, way, way above and beyond the physical pain).
I spoke with the Social Worker at rehab today as I’ve been feeling like I can’t take it anymore, I need a direction, a solution, something. Work was difficult before this last accident, now I can’t keep up.
I made a huge error again yesterday, completely unaware. I hate this. I don’t mind inconveniencing myself, but a co-worker is a whole other story and it pierces my heart. I wish I could lasso my brain and bring it back, make it do what it’s supposed to do.
She said basically Disability won’t consider me because I am working. Odd Catch-22, isn’t it? One doesn’t just jump from working to Disability usually, it’s a process that takes time. If I don’t work, I lose the house. I suck at my job, but work for friends who have the patience of Job, and my continuing to push myself takes its toll on my health.
This is the system I’ve paid into for over twenty years, I’m eligible for ‘should I become disabled’ but in order to be considered ‘disabled’ I can’t work at all. I don’t fit into their guidelines although I’ve gone through the Department of Vocational Rehab twice and have two Neuro Psych Evals, etc.
The process is exhausting, I can’t take the stress. I’ve fought for so long trying so hard to keep the house but the strain on my body and brain is terrible. There really needs to be a net to catch us in this situation, there has to be something other than homelessness or suicide.
Going to the conference is a reminder of the life I’m missing. I’ve fought the last seven years to keep my home and my job. I suck at my job and I’m now needing help to keep and maintain the house, and it’s all too much.
Getting to be social at the conference, to be around people was a double-edged sword. I’ve learned I can either have a house and a job and barely survive emotionally, financially, psychologically, etc., or
I can have a life. Ouch.
For years, I’ve chosen to put blinders on fully knowing what I’m missing, but focusing on the house, work, getting better, I could handle it for a season. Seven years of continual struggle, I need to get off the gerbil exerciser and out of the cage! I miss having a life. I miss having friends. I miss being able to go to church and so many things…
I thought if I worked harder I’d get better, and with the recent accident, getting sick twice, having heart palpitations, I know I can’t continue long-term. Something has got to give and I can’t have one more serious health issue. Health and fitness are so important to me.
Where does a person go when they can’t self-support and don’t have close friends, relatives, etc.?
Would you please keep my in your prayers? It’s been a long, tough road thus far, and there are no signs of relief in sight.
I have to do something to get out from underneath all this struggle, and, to get myself to stop crying so much! They say God has a crystal lake in Heaven where He catches all our tears, well, I’d imagine everyone’s wearing rubber boots from the flooding.
My internal Check Engine light is on, better go rest the weary brain. Thanks for listening.
Blessings & hugs,
Tags: asking for assistance, asking for help, disabilities and independent living, housing crisis
Back to the Beginning: A Glimmer of Hope? (posted May 14, 2009)
Speaking with my counselor today she reminded me she has a friend who has a friend who has a horse ranch and there may be hope for me maybe working there. The lady rehabilitates injured horses using the gentle horse whispering stuff I love so much.
From what I’ve been told, the spirit permeates the area, oh how lovely does that sound! I guess the woman that owns the place would eventually like to bring in abused children to soak up the healing spirit too. Right up my alley! I would love to be a part of that.
So today we talked about that and although my counselor said she knows it’s hard for me to hope for things sometimes, she would hope for me! I thought that was so sweet. And to know there may be a place I can use my love for horses and people, well, that warms my heart and puts a big grin on this serious face of mine!
I have to have a plan for what to do, so many parts of my life continue to hang in limbo and uncertainty. This could be one thing I might actually be able to have some control over. But I do know, if I sell the house or end up losing it, there is a lot of work to do and I’ll need a lot of house to prepare either way.
This house was a miracle to come across in the first place, it had been well loved, I’ve loved and cared for it too, I won’t be like many who face foreclosure and destroy the very places they once lived and thrived in. This is a special place, it must be honored and loved.
I will rest and pray, rest and pray, let this sink in and hope to come up with a plan.
Back to the Beginning: Support Group Tonight and Humor (posted May 14, 2009)
I learned at support group tonight the conference I went to has been videotaped and will be available online and I am so pleased! I look forward to viewing the sessions again, especially the afternoon ones where I was more physically present than mentally (brain fatigue).
Tonight the facilitators shared the new Brain Injury resource library of books, CDs, DVDs, and other materials we could check out for several months at a time. Nice!
It was also a time of socializing, I was able to speak with the Occupational Therapist who’d attended the conference too. I told her I was glad I was able to get a room following the conference because when I went to the lobby I felt the floor move.
She told me she wasn’t going to leave the conference until I had a room. She wasn’t sure if she was going to have to drive me home, pay for my room that night or what, but I was not in any shape to get into a car!
She said there’s another gal in our group who hasn’t attended for a while who faced almost losing everything and things turned around for her and she actually got better. She said she holds out that hope for me, she just has to.
I said I contacted Craig Sicilia from the conference to see if he could help get my story out, he said he would be glad to help, and Janice said that was great. We talked about how hard it is for me to put myself out there.
She said she bet I was never that open or vulnerable even before the accidents, true. I think I made a joke about sharing my story (for me anyway) is like being an Emotional Flasher opening up my overcoat and flashing the world! LOL! :-) That still makes me laugh!!!
She said even though it’s difficult to do, she just has a sense something good is going to come out of this.
I said one of the things I learned at the conference was the gentleman who works with the soldiers at Madigan Army Hospital. He talked about how Brain Injured folks get a baseline and then when we’re exposed to stress, the baseline symptoms appear again. (I wish I could write it as he said it, this is the gist of it.)
I said that was a very insightful moment because I think the reason I’m struggling so much is I’m searching for my new baseline as it changes after each accident. She agreed.
It was really nice to get to chat with folks tonight, to encourage and support the newcomers, and, make the experienced folks laugh with Brain Injury humor only we can understand. Ever since I was a little girl I’ve loved making people laugh, so glad that is still there. :)
Tags: Brain Injury, humor, the lighter side of tbi
Back to the Beginning: Broken and Touched by a Different Kind of Healing
(posted May 14, 2009)
Today has been a tough one emotionally, not surprisingly following difficult news. I have to share something incredible.
In addition to the tough news from the Social Worker yesterday, I received a letter from the at-fault party’s insurance saying my ‘minor’ injuries will be difficult to prove. I was very angry and tired of being railroaded by an insurance company that had once been kind.
At my wit’s end, I went into today’s appointments just barely getting myself there. Deep in thought at the chiropractor’s office when I was called back, the Chiropractic Assistant didn’t lead me to the adjustment table so I thought today was the re-exam. I tried to sit, but went to the window instead.
A rainy day outside, and a rainy day in my heart. So many years of struggling and so bone tired.
The Chiropractor came in and asked about my pain, but it seemed like she knew I needed a safe place to share my heart. She asked if there was anything else going on I’d like to talk about. I almost said no, and then said yes.
I shared my difficult news, she knows about my housing situation as I’d sent them a letter just as an FYI and more so in hopes of being able to encourage others. She asked if I’d spoken with an attorney and I said I’m struggling with a lot of this because I’m not a litigious person.
I told her I don’t know how to face this possibility of losing my home and all this without being broken, and I started to cry. I HATE crying in front of people!
In her gentle, healing words, she said the attorneys I’ve consulted with she continues to be impressed by, and the one thing they’re concerned with, is recovery. Ah, what a nice word to hear.
She said insurance companies do that, don’t take the letter to heart, if I have, she encouraged me to let it go.
She shared that when patients mention the word ‘stiffness’ as I had about my body pain, that always makes her think of the word stress. The body is needing healing…
I said there’s so much going on right now and it seems like I just can’t get the rest I need.
She encouraged me to take care of myself, it’s not being litigious to inquire of an attorney, or get an attorney, that is taking care of myself, and that low-impact injuries are common and their letter doesn’t change what I’m experiencing.
Having an attorney can be helpful for some folks because they do a lot of the paperwork I would be doing or am trying to do, and I can focus on healing. Wow, that sounds lovely! And, maybe they can offer some help or assistance with the disability claim as well.
Her support made my day, what an awesome thing, to be in the presence of folks who are not afraid of the human condition, disability, feelings, etc. Talk about healing! It’s like a spring rain in the desert.
As I went to leave, I’d requested my records a couple weeks ago (I think). They apologized for not getting information to me about how much it would cost.
The doctor’s husband does a lot of their book work and was the one to tell me it would usually cost $100 but considering my circumstances they were only charging me for their cost which is $35. I asked if they were serious and he said yes.
I was overwhelmed! I’d expected a couple hundred dollars and had brought the checkbook for my savings account. Words can’t express my gratitude and how much my heart was touched, I really wanted to cry then!!
I went out to my car and let myself cry a little more before I left the parking lot.
There is a different type of healing going on there, they heal broken hearts and spirits too. To be in a place of such great need, to have folks grant such loving kindness is beyond words.
Healing broken spirits is the most beautiful thing I’ve ever seen.
Tags: compassion, healing, kindness, understanding, transformation
Back to the Beginning: Update (posted May 19, 2009)
I’ve been resting a lot trying to get to the better side of life with Brain Injury, but haven’t quite arrived there yet! Half a day – whether it be work, house work, yard work, or even leisure (what is that?! LOL) is definitely my new limit.
Even with a lot of rest, I’m still finding I crash without a whole heck of a lot of stimuli, so in a way, I’m going back to the very beginning days post-injury years ago. I like to travel, but not backwards! LOL…
Big news of the day is my Step Mom called, Dad fell this morning and broke his hip. She just called a few minutes ago to say Dad’s hip replacement surgery went well. The doctor said recovery will be 4-6 weeks with absolutely no weight on it at all.
Needless to say this broke my heart, last time I talked to Dad he was hoping to be able to walk without the aid of a cane by next year. He’s worked so hard to recover from his open heart surgery last year, this just squeezes my heart!
Life with Brain Injury is highly unpredictable and filled with its own season(s!) of disappointment so I am somewhat taking this latest news in stride. Life has a direction all its own and its best if we can bend and not break.
I had a good re-exam today with the Chiropractor, looking at the physical improvement and now moving to one adjustment per week. I’m grateful to be out of the more acute phase, not completely out of pain, but not a hurting unit like I was the day I walked in there. Just wish my brain would make a grand entrance!
I’m thinking about scheduling an appointment with my primary care physician to make sure nothing else is causing this daunting fatigue. I highly doubt anything will be found via blood work, but would like some peace of mind even though it means paying out of pocket. With the housing situation looming, this is certainly not the time for me to be at my worst.
I did find out about the Energy Assistance Program here locally, they can only help folks once a year, I’ll have to wait until October to have heat assistance again. I may contact the local St. Vincent de Paul to see if they know of resources.
Speaking of St. Vinnie’s, I have a load of donations for them to pickup. I had thought about trying to sell some of those things, but part of me still likes to give and believes that’s about as natural as breathing. They’re a good ministry, I don’t mind supporting and know they are in it to help people, not make a profit.
Food Benefits have increased (thank God!). I was able to buy food for this month and still have money left over so I can buy produce and dairy more than just once a month.
I went to the Farmers Market today, prices there have gone up. I only bought Kale for $2 and juiced it tonight – and let me tell you, what a difference! There’s nothing like locally grown produce.
Over all, I really am trying to let go of things, let go of the outcome of what is yet on the horizon. Let go of the home, if it comes to that. It is difficult. I’ve had to let go of so many things thus far, it’s really a challenge to settle in to more struggle. There just has to be a balance between holding on and fighting, and letting go. I am a tired warrior who wants exquisite good to come from this jagged path.
I’m researching online to see about local auctions or eBay auction assistants, I know it’s a huge percentage they take, but I’m accepting I won’t be able to do it. It’s taking all I’ve got to just barely get the front lawn mowed! And now my mower is blowing white smoke, so I have to figure that out and there’s precious brain bucks to go around now. Survival it is!
Things have to get better, I’ve lived at rock bottom survival for too long and miss life. But maybe even that is setting an expectation that could possibly be dashed too.
Praying for the greatest good for all…and for God to make something beautiful out of my life.
Tags: ABI, disability, disabled, eBay auctions, letting go (trying), mTBI, TBI, update, update on dad |
Back to the Beginning: How Could Anyone Sung by Shaina Noll (posted May 20, 2009)
A song of encouragement worth sharing! (If you’re at a point where listening to music or watching a video is okay. If not, the words are below.)
“How could anyone ever tell you?
You were anything less than beautiful…
How could anyone ever tell you?
You were less than whole…
How could anyone fail to notice?
That your loving is a miracle…
How deeply you’re connected to my soul…”
(songwriter: Libby Roderick)
Tags: ABI, acceptance, celebrating diversity, encouragement, Inclusion, inspiration, mTBI, shaina noll, songwriter: Libby Roderick), TBI
Back to the Beginning: Excellent BIAUSA Article From Injury to Destitution to…?
(posted May 22, 2009)
Superb article succinctly speaks of Brain Injury…from injury…to destitution…to public health and welfare systems…what I currently face:
Published in the Volume 3, Issue 2, Spring 2009 “The Challenge!” magazine. Click here for more information on this excellent magazine: http://www.biausa.org/brain-injury-publications.htm
Tags: assistance, BIAUSA, Brain Injury Association of America, concussion, health care, injury, mTBI, poverty, systems, TBI, The Challenge Magazine, welfare
Back to the Beginning: Neurologist (posted May 23, 2009)
Appointment with Neurologist Thursday went well.
I shared I’m still struggling, I definitely have limits of only a half day now or I crash. I mentioned caffeine used to help extend my brain budget, now it is not working at all!
I talked also of the fight to keep my home and he asked if I’d filed for Disability. I said yes, it was the last resort. He said he tells everyone to file twice and if you’re denied then get an attorney.
I asked if that’s just the system, he said yes. He said with some things like MS even they’re denied. Some things like Lou Gehrig’s Disease when a person’s prognosis is death within a specific time, they’re usually approved right away.
He said the job of the attorney is to take the doctor’s notes and what I’ve shared and put it into legalese. That helped me realize I need to not struggle with this so much and leave it in the hands of the attorney. I said they’re kind of like interpreters, he agreed.
I thought it interesting every care provider has said the same thing of getting an attorney. I take that as a sign, even post-injury when I’m not as sharp, hearing things from three separate people, that’s a sign to pay attention.
I talked of my fatigue, struggling with work, everything taking so much longer and having to nap continually. He asked about my moods. I paused and said honestly I’ve been suicidal, just tired of the struggle. I said I wouldn’t do anything, I know better, but I’ve been here for seven years now.
I mentioned I’m living the typical Brain Injured life, I present well, but live as a shut-in, no social life, no friends, can’t handle church and the things I used to do.
He was really good at being clear on action items for me to do. Fortunately I took notes!
I need to find out the PIP balance and see if there are funds for Speech and Occupational Therapy, that will help me. He said the crashing can be helped by pacing and planning. Check into an attorney.
As far as socially maybe just the Brain Injury Support group is enough, maybe I will meet someone I can connect with and go to the park or something. I’ve not been able to do that thus far, but like he said, if I get on Disability that will help the financial strain.
I’ve sacrificed social interactions to protect the brain budget, to be able to keep the house and my job. I think everyone knows and sees how I’m struggling to do that more now than ever.
My heart has been aching for friends that won’t leave. I don’t think it is healthy to endlessly postpone this basic human need believing I’ll get better or things will get better “someday.”
I said things are strained at work and have been for quite some time, even though I work for friends.
I’ve tried going through DVR twice and that didn’t work. (In my heart, I feel like a vocational failure).
He suggested we up my meds since I’m still on the lowest dosage and see if that doesn’t help me with energy, moods, and the ability to get to my appointments. He said I’m still in the early stages, emotional despondency is normal.
I told him a new injury was not in my plans AT ALL! He said there will be improvement, there will probably be a time when I look back and say, “I couldn’t have done that a month ago.” I said I sure hope so! He said even when people have their fifth head injury, there’s still improvement.
I think I’m beginning to accept the system is what the system is. As far as getting house help, or a miracle, I would LOVE that and am still trying to remain open. It seems in our world in order to get help you need a celebrity leading the charge or get your story in the news. With very limited energy it is tremendously difficult to continue to advocate for myself.
I have to focus on what lies ahead, taking care of the house, mountains of paperwork, attorneys, and, in many ways, reliving a lot of stuff I’d long since put behind me. Like a friend said at support group last time, a new injury brings everything back up. He was right; it stirs up everything that had been dormant for years.
Never thought life would turn this way, my biggest concern outside of losing my house and pets is losing my heart. I don’t want to be changed into someone I’m not or compromise who I am or want to be.
I don’t want to have to lie or cheat to get my needs met. If it means living with less, I want to live with a whole heart and spirit still intact regardless of the bitter cold storms and realities of life, human nature. Cheating the system means cheating my own conscience, no can do! Although I’ve seen those of supposed moral standards do that.
I think of that poem The Guy in the Glass. http://www.theguyintheglass.com/gig.htm
(‘Pelf’ in the poem means wealth and riches, especially if dishonestly acquired.)
Tags: brain fatigue, Brain Injury, home, neurologist, new limitations, pacing and planning, self-care
Back to the Beginning: Unlocking Help (posted May 24, 2009)
Blessings to all those who serve and have served our country. Growing up with a Dad and Grandparents that served in WWII, I have utmost respect for our service men and women. God bless you!
Yesterday I spent resting, more than anything, but did manage to get the front gutters cleaned. If I had money to hire someone, I would. I’m not supposed to be on ladders (balance), but what’s a person to do?
I took frequent breaks, napped, and drank cool water. I am glad I got it done, but by the end knew I really shouldn’t be doing this as I’d lost my balance on the A-frame ladder.
Scared me, didn’t fall, but enough to propel me into my need for help…plus, with the exhaustion of one simple chore, I couldn’t get out of bed this morning. Glued to bed. When I did get up, my balance was way, way off, it was a slow go. My intentions for going anywhere delayed.
I’ve been wearing earplugs all day to give me more peace and quiet, and spent most of this beautiful spring day sleeping too.
If I don’t clean the gutters with all our rainfall, the water cascades and pools in front of the house and then floods the basement.
This is really an awkward issue of trying to get help, this is not the first time I’ve been here and calls for help whether from friends or family, or even the church I used to attend have fallen short.
I mentioned to a friend from the church I used to attend a couple years ago, it’s quite telling when another religion offers to help me and my own won’t, he said “Tell me about it!”
I guess it’s not just me. My Dad is in the rehab after his hip surgery and his wife’s church came to visit him, bringing a crocheted prayer shawl, but the church he attends (the same I used to attend and serve at too years ago), didn’t call, visit, etc.
And it’s tough too, because getting help from folks can include a lot of ‘noise’, by that I mean, intrusive questions, ulterior motives, training new people about Brain Injury, having new people around the house – who can I trust? A lot of movement, stimuli, etc. It’s a lot of work just to get help!
I think it’s also hard to need people long-term, and there’s no straight path a person can step onto for the help they need. I really need an advocate or life manager who can do all this for me and I could focus on resting and getting better. That’s a perfect scenario, but this is real life!
I’ve often wondered what combination takes to unlock the help we need. Seeing my Dad and Grandparents live lives of service, and the volunteering I did before all this, I can’t help but wonder, where’s the help?! It is much easier for me to live as a giver than a person needing the help, that’s for sure!!!
If I could do anything for folks with Brain Injury, I’d create a circle of help for each person or family with volunteers who could help with house, yard, whatever chores. That support would be life-changing! They’d be Brain Injury angels in my book.
Back to rest for me, those trips up and down the ladder did a number on my hips and strained my neck pretty good…not to mention fried brain matter!
Tags: getting help, Memorial Day weekend 2009, seeking assistance, yard work
Back to the Beginning: Perspective on Losing My Home? (posted May 25, 2009)
I spent another better portion of the day resting (I know life with TBI is SO exciting!) It is still quite odd to me to go from being very active all my life, not a TV watcher or couch potato, to moving, well, at a snail’s pace.
The rest of the day was spent again, working in the yard, in increments, taking frequent breaks. Today was the procrastinated weed whacking. Being sensitive to stimuli makes things like powering up the weed whacker or lawn mower dreaded. Lots of ear and eye protection!
I always start in the front of the house, and since I noticed my neighbor driving by and looking at the neglected area next to the shed, that was first on the list.
It’s exhausting work to do as well as prepare for. But it needs to get done and while I was resting on the front porch, I was thinking about if I do end up losing the house. The one side of it is I did get to live my dream, I have always wanted a home of my own and I’ve had this one for seven years. Maybe that’s enough.
I think of what Pema Chodron said she starts with as a spoken intention, “Good in the beginning, good in the middle, good in the end.” I thought of that with the house, and since it’s a place I love so much, I thought of, “Love in the beginning, love in the middle, and love in the end.”
Owning this home, getting to live here, really is nothing short of a miracle. The details of it were perfect, and friends told me the house just looked like me.
There is a built-in kitty door for my cats, fenced front and back yards for my dog, and even some Bamboo growing in the front yard. I grew up with Bamboo growing in our front yard.
It’s easy for us humans to look at all we haven’t done, I visit there often too. Today I thought of all the things I’ve been able to get done here.
In the last seven years this old house has had a new roof, new back deck, new toilet, new to me refrigerator, new exterior and some interior paint.
I have planted roses in honor of my Mom’s memory (she loved roses!), so when a person passes away now, they get an appropriately named rose planted in their memory. It’s a sweet way to honor their lives, and, the roses all are fragrant, it’s a living gift to me, neighbors, and whomever enjoys or receives the beautiful blooms.
The Lithodora I planted are blooming, they have these beautiful bright blue flowers, they’re planted in between the roses. I put in a rock pathway, I planted some Irises (haven’t bloomed yet…I’m not a green thumb naturally, learning as I go!)
I’m hoping the Rhododendron’s I planted a couple years back will bloom this year, if they do, they’ll add a bright splash of red. The little Lilac tree I planted is starting to grow.
I’d paid a friend years ago to cut out the toxic ivy and trim the nasty Laurel hedge that grows everywhere.
I had motion sensor lights installed outside, so there are a lot of things that have been accomplished.
Of course there’s more I’d like to do, like remove the water damaged vinyl in the bath and replace it with the beautiful marble tile I bought very inexpensively at Costco. And, install the beautiful pedestal sink I also purchased at Costco.
I have several hummingbird feeders out for the very territorial, dualing frolicking feathered friends, as well as two other feeders for the Chickadees and smaller birds.
Needless to say, I love this home deeply. I started to put down lawn fabric a year or two ago with rubber mulch and then ran out of money, so that’s not finished yet. Because I’m so limited on energy, I may not have energy to do something once, so I sure as heck try to keep myself from repeatedly having to do the same thing over like weeding. It’s awesome to not have to weed that area!
Whacking the weeds I realized today we’re an odd species, we go out into nature and admire the very weeds we’re trying to kill in our yards! That’s vacation! LOL.
Any work I do on the house now is more with the mindset of potentially having to sell, and if I can have love in my heart, it’s far easier to face each day than thinking this may be the last Memorial Day I spend here.
I think love can be a pure motive, wanting the highest and best for this home, come what may. It was loved by the folks who owned it prior, even though it was a repo when I bought it, it had been loved, not torn apart like so many.
In fact, the previous owners stopped by years ago when I was out working in the yard and they said they were glad it went to the right person. Wow, I haven’t been the right person for much of anything post-injury, that comment sure stuck!
Love in the beginning, love in the middle, love in the end.
Tags: disabilities and independent living, home, home ownership, perspective
Back to the Beginning: (Gulp!) Asking for Help (posted May 28, 2009)
I went to St. Vinnie’s last week after I received my natural gas heating bill I now owe on. Stressed out and heart-sore, I nervously went in. There’s a certain embarrassment and maybe even underlying shame asking for help. I even took my paperwork, bank statements prepared for full disclosure. (I really hate that part of asking for help because your privacy gets invaded by strangers and it’s a really weird feeling!)
The people there I’ve dealt with thus far are very sweet, and seem to even have an understanding or at least knowledge of Brain Injury. The last gentleman mentioned his wife has Alzheimer’s so he wrote the information down on a piece of paper for me. And this gal, I tried to show my paperwork to and she said she didn’t need that!
I gave her my story and asked if they could help, she read it and asked if I’d ever served in the military. I am glad the word is getting out about military suffering from TBI in hopes of there being greater support.
They are out of funds, she said they’d have some next month, but didn’t know when. I’m getting too close to desolation, and it’s a fierce struggle.
She was very gracious and kind, understanding what it is to get to the end of one’s resources and the end of trying everything you can to keep from losing your home. There seems to be resources for those who lose everything, and that’s what I’m fighting so hard to stay away from.
It does seem that is the system is either self-support fully or government support fully. I guess I feel I’ve lost so much already, I’m trying to hang on to the my last frontier!
She said unfortunately they can’t help me, but they do have food. She suggested I get the story out, sending it to Oprah, etc., which I said already have done.
As a last comment, she asked if she could keep my letter, and maybe pass it around, I said yes, thank you. She said she has strong faith and said she can give me a hug. I told her she was very sweet and she rocks! I appreciated her heart.
In retrospect, I’d have to say this whole experience has tested my faith, in God, church, and in humanity. I think I have strong faith, or had strong faith, but people still lose their homes, get taken advantage of, etc.
I guess these big tests in life challenge everything we’ve learned along the way, and, what we thought was the truth.
Today I’m going to try to get some letters addressed to be mailed to area churches and service organizations, I’ve been wanting to do this for several days, but am exhausted before I’ve even begun, so we’ll see how far I get.
I’d run out of envelopes and prayed St. Vinnie’s Thrift Shop would have some, and they did, 100 for $.45, I can afford that. Thank you, Lord!
The challenge I face remains the same: keep my heart open no matter what.
There is a tremendous amount of loss and heartbreak that happens, and it’s tough to heal because it’s like an ongoing process of accepting and trying to deal with bad news on my own.
Tags: asking for help, heat assistance, life with TBI, spirituality
Back to the Beginning: Horse Therapy and Head Cases (posted May 31, 2009)
The events of the day changed as I’d received my records from the Neurologist in my Post Office Box. I usually only check the box once a week and since I didn’t on my usual day, went today.
I don’t think there are words that can describe what it is to step back into some intense pain. A lot of this process, new injury and looking back at the old injury are, well, brutal. I’d received the records from my Chiropractor and didn’t have the courage to look at them, I thought I’d be fine to challenge myself with these. I’m just not that strong! My plans for the afternoon kind of derailed as I reeled from my brief Brain Injury history lesson. Those dang deficits are very difficult to go back and revisit.
I think I finally realized although my goal was go get better, return to my old able self, I think I have to let go of that fight. This last accident seems to be quite the kicker. Acceptance of this very moment takes priority.
I do have friends who still believe God can heal me. I had thought that for a long time and put all my energy into getting better and just kept hitting that wall, that plateau, as they say. I guess I’d rather them walk with me where I am now than placing false hopes on how things could or should be.
When I asked God to take this away before, He clearly told me twice, His grace is sufficient. With that I knew I didn’t need to ask the third time!
As I sat in the company of sweet horses, I thought if people knew the suffering and devastation we face on this path, heck, they probably wouldn’t be able to sleep at night.
I think the reason I’ve loved being around animals all my life is because you can be exactly who you are and still be loved! They’re not about judging, comparing me to the old person I was, or criticizing. Their spirits are awesome! I’ve always been fascinated by the fact we can bond with animals no matter what language we speak, we can still come to form a relationship and have understanding. Love that!
I especially love being around the babies, they’re SO sweet! Checking everything out, curious, open.
One is a year old, the other maybe 10 months old. Beautiful. I do best in wide open spaces, ‘don’t fence me in’ LOL! :-)
I did stop by a wonderful coffee shop which offered a free beverage since I’m following them on Twitter, it was a lovely experience and great drink too! How very generous of them in these tough times. Lots of neat things on the menu.
I then traveled to a nearby shop that sells wonderful healing things, always has beautiful, soothing music playing, fragrant candles, just a good place for the spirit. I was hoping to find some little cards to put in the mailers I’ll be sending out, but they were out. The nice lady at the counter said they could order some. Since I had my letter with me, I asked if I could leave my story with her, I told her
I was in need of a miracle. She said she’d pass it along to her mom.
I have worked flipping hard to get better, I have the documentation, witnesses, whatever to prove it. But I’m coming to accept (I think for this moment, at least!), this is the new me and I have to give myself that unconditional friendliness. And, I have to believe if this is as good as I get, there will be an opening, a place for me. There must be a place where a person with a good heart, good values, etc., can live out their life without having to lie, cheat, or steal.
I have to believe there is still goodness in people, that there is grace and mercy, a better life ahead for me. I guess even though I do feel tremendously hopeless and helpless at times, it is the little rays of hope I run to, and it is the support of others that keeps me fighting. I have been hit by tough times in life, but never anything of the magnitude of this!
Once a fighter, always a fighter, perhaps. But honestly, I’d rather not be fight–ing for my own life, I’d really prefer to put that little go-getter that still lives inside of me to work helping others! I think those that are outside of TBI think things inside TBI are easier, that systems are better set up than they are. In reality, they’re still in the prenatal stages if they exist at all.
God bless those who can see beyond my disability into the spirit of this hurting human soul. Thank you for breathing new life into our weary, wounded souls, you are truly the healers of this world…with a gift not from this world!
The next step, I hope to get my story mailed out to area churches and service organizations to see if they would help get a fundraiser together to sell what I still have left. Even if we can raise a small amount so I could stay here for a pre-determined amount of time and prepare the house to sell, that would be good.
I’m not asking for the world, I don’t think. I’d really love to keep my house, but how does a person do that when their earning power has ended and they still have life left to live? I am willing to be completely transparent in the company of people I can trust and thereby demonstrating need.
When I was out in the pasture, I did start crying a little bit, I’d been out there praying as I’ve been doing on my walks, desperate, absolutely desperate for God to crack open the sky and grant help. It’s an odd thing to have grown to believe “all things are possible with God,” but wonder how when we cannot keep people, especially vulnerable folks, in their homes.
I have far more questions than answers; all I can say is TBI changes everything, faith, relationships, all of life.
I close with quotes from Michael Paul Mason’s book “Head Cases”, a book I relate with SO much!
“A Brain Injury is never an isolated incident; it affects nearly everything associated with the survivor. It can collapse a family and flatten a business, evaporate friendships and allegiances, overburden a community, and buckle a state’s healthcare system.”
“Of all the medically challenged injuries, Traumatic Brain injuries require the most involvement and cost over time…a hospital Finance Director in Boston once told me that he has never met a family that was financially prepared for the cost of a Brain Injury.”
“Cheyenne reconciled himself to the idea that he would settle for just surviving in Hollywood, but deep down, he wasn’t sure he was capable of even that.”
Tags: acceptance, head cases, horses, looking back, medical records, Michael Paul Mason, processing life with TBI
Back to the Beginning: Serious Mistake at Work (posted May 31, 2009)
I made a mistake this time so serious the appraiser got reviewed. I can’t believe I make such devastating mistakes without intention in the moment nor realizing it later. I received the email days ago and it’s taken me this long to be able to talk about it.
If these folks weren’t friends they would have fired me long ago. They knew me before the accidents saw I’d changed, but still hired me. I don’t think I answered my potential boss’ question right in the interview, “If you weren’t here, what would you be doing?”
I answered, “I’d probably still be home crying.” Oops, I think he meant professionally what would I be doing!
I can’t tell you to what depth these things go in my soul. My theory of work, I’ve always worked in offices, was to help “the guys get their jobs done.” It was always important to me to work with integrity, make things better than I found them, find humor in things and try to have fun working.
To what extent of failure do I need to reach for people to get I have a disability that devastates not only my life, but the lives of those around me?
I felt horrible, and all I could do was apologize. It is a terrible place to be on a first name basis with failure. I feel like I’m slipping further and further away from the recovery and healing I so desperately was seeking. It’s more like a free fall I cannot control or make better, it is hurtful to bring pain into other people’s lives.
God forgive me for all the mistakes I’ve made. For a while there I had some clever comebacks, like, “yeah, but nobody died!” or “How important is it, really?!” but that’s long since past. I grow weary from my own blind mistakes, I cannot trust myself. And gee, I think I’ve only been tasked to do one report a week recently. Reports still take me three times longer, on average to complete. Not good in a “rush” or “super rush” industry.
My boss has his fiance working for him now although I’d been hired initially to be his assistant. I’d tried to have him fax things to me, but I am quite sure he doesn’t want to take the risk involved with my myriad of inconsistent errors, and the fact I’m high maintenance for being an assistant.
Been doing this job seven years, and I still can’t get it right. Before my injuries, heck, if I could forget about work over the weekend, that was a major accomplishment. Now, I simply can’t remember how to do things, whether it’s work, driving somewhere I’ve been before, etc. The memory mechanism has been injured.
Ive been through DVR twice to try to re-train me or start my own business. My processing is too slow and they said they couldn’t help me until I got my act together. That’s kind of the whole point of my being there, if I could get my act together, I wouldn’t be there! This was from a DVR counselor who has a severely Brain Injured child, and a job placement counselor who had a Brain Injured child.
Understanding? Help? Hope? No.
I kind of feel like that guy you see on TV wearing all those question marks! Life with TBI becomes a huge series of questions I never thought I’d face this young or without a full brain to problem solve with. I expected many of the things I experience here, but not until I’m much, much older!
But for the grace of God go I? But what about when God’s grace includes three car accidents you didn’t cause, life-changing injuries, and no net to catch you?
There is still a giving, over-achiever inside of me aching to get out and accomplish some good things, have some successes, not be such a burden or disappointment, but to be trusted and relied upon. I miss those days.
Tags: failure, living with traumatic brain injury, mistakes, working
Back to the Beginning: Music As Medicine Article (posted June 1, 2009)
I’ve sure found my taste in music has changed post-injury, for those times I can listen to it, it’s not loud! It’s soothing, relaxing, peaceful music most often, and sometimes, when I can, I have a bunch of encouragement songs I listen to when in the rough spots of life.
This morning, King5 Morning News forwarded an MSNBC link on Twitter:
I had to share it because when my Dad had open heart surgery last year, he still says to this day, he did not remember I was there, but he remembers the music.
The nurses allowed me to bring in a portable CD/radio player and I took a handful of CDs with me, they were all Fernando Ortega.
I believe strongly in the power to connect with the human spirit whether the person responds or not. I watched my Dad resting, not asleep, not aware I was there, but move his mouth, head, and arms like he was joyfully singing with Fernando’s music! Sacred moments.
I love what the article says about how we respond to certain types of soothing music, how it gets into the deeper parts of us needing healing. Awesome! (They even mention it helping Brain Injuries).
Like the Classical music station in Seattle says, “Because Mozart makes you smart.”
Tags: healing, life with TBI, living with traumatic brain injury, music, music as medicine, peace, resting
Back to the Beginning: Update (posted June 3, 2009)
While mailing some legal documents today, I ran into Brother Frank from the church I used to attend. Another gal from church, also a high-functioning TBIer, is losing her home. I don’t know the circumstances behind it, I just know our losing homes is like the elderly losing their homes. We’re vulnerable, and it’s a major catastrophic change.
It pierced my heart to hear this because we are in such a vulnerable state. We may look and present fine, but God only know what goes on in our heads (or doesn’t!)
I was thinking about the Neurologist’s records I scanned through.
For example, according to him, I’m well-groomed. This surprises me because no one knows how often I shower or don’t, if I’ve brushed my hair or teeth that day. My wardrobe wasn’t injured in the accident, my brain was! What a dreadful amount of energy we put into trying to get people to understand. I don’t think most people, even professionals, look deep enough into what we’re experiencing because our ‘normal’ is not their ‘normal.’
The gal from church Brother Frank mentioned also said her own children don’t get it. I nodded.
So many questions, what do we high-functioning TBIers do? We’re caught between being fully abled and fully disabled.
I just can’t help but wonder, where is the help? It is a challenge to keep my heart open when we struggle every day to keep our heads above water and there is such a strong undertow.
I can’t tell you how bad I want to get out of this place of dire financial struggle and hopefully be able to move on with a more full life. I would very much like to create the community support for others I don’t/didn’t have.
I am trying to exercise more although my hips tend to be out and I’m walking wrong (gee, I sure hope they come back soon – LOL!) But really, walking as I used to is causing pain in I guess my left Achilles’ Tendon, my hips seem to have a mind of their own, and the neck pain, well, that seems to be pretty constant. The neck feels more like bone on bone, and that’s taking a little getting used to.
I’m trying to be kind to myself whether I exercise or not, doing something active each day, and not beating myself up. Telling myself I’m going to be tired anyway, I might as well be tired and in shape! Healing takes time, especially for tendons, muscles, and ligaments.
I am working on getting more letters out, but there may come a time very soon when I give up miracle chasing and get on with the business of selling stuff and moving somewhere. Everything becomes so much more uncertain, day to day, minute by minute, week by week, with TBI.
If there are happy endings with TBI, they’re sure not making their ways to my eyes and ears. All I hope for, really, is to be able to have a better, fuller life, than this one of visual constraints at this point.
Tags: life with TBI, mild traumatic brain injury, processing life with TBI, update
Back to the Beginning: My Most Embarrassing Migraine Story Ever (posted June 9, 2009)
This will go down in history!
I woke up Thursday morning with what I thought was a sinus headache, I was congested, so used the nasal spray, fed the animals, saw how terrible I looked in the mirror, and went back to bed.
A little later, I got up to get some milk, the ice pack, and some OTC medicines to help calm my aching head. By this time, I didn’t want to eat at all, it took everything I had to get that down.
After lying down most of the morning, I rose to get ready for a counseling appointment in the early afternoon, still not feeling great, but hey, it’s just a sinus headache, I thought!
Driving I didn’t feel well, but headaches, migraines, whatever, some times I can push through them. If I could just get myself to a fast food restaurant, I was sure getting some caffeine and a bite to eat would help.
I was almost to the drive through when I started praying, “Oh Lord, please don’t let me throw up!” Too late! I quickly pulled into a parking spot and continued my not so fun projectile vomit adventure.
Not only did I not have the phone number to tell my counselor I couldn’t make it, I was also wearing white! The only day I’ve worn ALL white in years!
So, I drove to her office, doused myself with some water from my water bottle thinking that might help, then had to tell her in my stinky clothes I couldn’t stay, I had a migraine and explained the unfortunate series of events and I could not stop shaking. It was a HOT day, so the windows were down in my car, I think I made a joke about not having to worry about someone stealing it! LOL!
She suggested I go to prompt care, I was reluctant due to finances, but her urging helped. She’s a smart cookie!
The folks there were very kind and compassionate, there was an older lady checking on the people in the waiting room, it was very comforting. I was sort of half lying down in a chair, trying to keep my stained clothing off of it, so had all my weight on my left hip. I must have looked absolutely hideous.
The older woman asked if she could get me a glass of water and I tried to whisper I’d just thrown up all over myself and am scared to drink anything. She understood, asked if she could get me a blanket or something, I said no thank you. I guess I whispered because I was hoping no one would figure it out! Not such a smart cookie! LOL!!!
It turned into a long afternoon. As if the above scenario wasn’t embarrassing enough, well, they gave me a shot in my tail feathers! Not only am I wearing white, vomit stained, smelly clothes, but now I have to moon the technician I just met seconds ago! Oy vey!
The shot helped to take the edge off the pain, they prescribed an anti-nausea medicine and something else for the migraine, but oh yes – it gets better! The doctor told me to fill the prescription as soon as possible.
They release me and now I have to go to Wal-Mart in my unflattering garb, drop off and wait for my prescription. (Calgon, take me away, please!) To become the Incredible Shrinking Woman or the Invisible Woman would have made me very happy. Oh the funny looks from those other Wal-Mart shoppers.
These are the moments that humble us most, they are really quite common with TBI, so I just went
with the flow (oohh, terrible pun, not intended!)
This is real life, and I wouldn’t want it any other way! :)
Tags: embarrassment, living with traumatic brain injury, migraines, Realities of living with TBI
Back to the Beginning: I Asked For Help – Locally (posted June 15, 2009)
In between migraines, I did finally get my letter out to churches in my own city in hopes we could start a fundraiser or something before it’s too late.
Honestly, in retrospect, I’ve been asking for help for a long time! I’ve mentioned this type of fundraiser to friends and family who are close enough to know me and my need.
I asked a friend who used to be the Habitat for Humanity Volunteer Coordinator, my Birth Father, my Sister-in-Law, and even my best friend to help and it hasn’t happened, but received painful rejection, awkward silence, or complete loss of relationship instead. Owie. Where are my angels?! Help?!
There are some very piercing truths and realities that come with TBI, or I imagine, any serious or debilitating injury or illness. There doesn’t seem to be much help for folks with TBI whatsoever and it’s frustrating!
On the one hand, I don’t think I’m asking for the moon and the sky and the stars, just reaching for the hope of keeping my home is all. Yet on the other hand, I feel like asking for help alone is too much. Most people who do get help have advocates pushing for them, it’s not them pushing for themselves like my awkward case.
Desperate times require desperate actions, am I indeed asking for too much?
I’ve pursued all the avenues possible and they’ve ended as dead-ends, what else is a girl supposed to do?
I’m not asking for a trip to the Bahamas and a Masarati here…am I asking for too much? Do the laws of attraction and abundance not apply to people with Disabilities?
Hope for change, anyone?
Tags: asking for assistance, asking for help, damn it!, debilitated, disabled, disabilities and independent living, housing, housing crisis, long-term care, serious illness, somebody help me
Back to the Beginning: Speaking My Language and The Spoon Theory!
(posted June 15, 2009)
I’ve been unable to blog for quite some time while tackling back to back migraines. Oh joy! Oh bliss! This past weekend I had a three-day migraine, which is also as unusual as the last one.
Fortunately I saw my doctor, okay, she’s a Physician’s Assistant, but she’s been my doctor for the last four years, on Thursday before the migraine downturn.
She had received paperwork from my Disability attorney, so had to schedule an appointment to answer some questions. Honestly, I dreaded it, dredging up all my struggles and deficits. But it went okay. Since she’s known me for so long, none of the questions would really be a surprise.
One of the questions was do I remember locations. I said not really. A good example was driving to the clinic that morning, I went a different way because it was such a beautiful morning and then panicked because I wasn't sure how to get to the clinic the route I’d taken. Weird since I used to live in that town and I’ve been seeing her there for four years now. Brains…what can I say?
Then she had a Psychologist come in and ask me questions, being as tired as I was, heck, I didn’t have much more energy to dread, so went with the flow. As it turned out, he is new to the clinic and has dealt with a lot of people with Chronic Fatigue and Lupus.
He was able to relate to me so very well, I felt like finally someone is speaking my language! He asked if I get a lot of blame and I said yes. He said people just don’t understand, but I said, if they did, they couldn’t stand to see us suffer and struggle as much as we do.
He synopsizes things very well, like the debilitating fatigue. I never used that word with my fatigue, but that’s exactly what it is, it stops me in my tracks. Same as with the debilitating migraines.
There is a healing place when you’re in the presence of people who understand, rather than judge, blame, criticize or condemn. Some people are actually able to see that we put all of our energies into day-to-day function, as he said. Another great synopsis.
He said for folks with Lupus, they’re putting their energies and focus into managing pain and fatigue day-to-day and that takes a lot of energy. It reminded me of The Spoon Theory a friend shared with me, please click here: http://www.butyoudontlooksick.com/the_spoon_theory/
Whether it be a rape, childhood trauma, unseen illness, we all have a language we speak, we’re not invisible, we’re just not speaking with folks who speak the same language…yet.
Tags: comfort, compassion, disability paperwork, disability process, living with traumatic brain injury, relationships, understanding
Back to the Beginning: Father’s Day and Dysfunctional Families (posted June 21, 2009)
I wonder if there were classifications for dysfunctional families just where we would fit in, mild, moderate, severe?
I visited my Dad in the rehab facility he’s at since his fall. He’s not the type of person who likes to be slowed down (yes, I can relate!) Needless to say, we have quite a bit in common, which is strange for me being half his age.
It can actually be kind of funny because he does repeat himself and then ask if he’s told me that before and I can honestly say I don’t know. I begin to believe us Brain Injured folks can be good company sometimes!
I watched the Mariner’s game with him which seemed fitting since I got stuck in the traffic on the way there. The Mariner’s won, and it was a good game, but I had a migraine so looking at the screen was a little much. For the most part, I looked outside and listened to the game.
I wish I could be at a place where a baseball game is enjoyable. I think being in survival mode, well, everything changes. I’m going to food banks, DSHS, and trying to get help keeping my home, those players are paid millions, I am poverty-stricken and in threat of losing my home.
We’re not a demonstrative type of family that expresses emotions or ever talk about feelings so when my Dad started crying, that startled me. He took off his glasses, and said,
“Every…", sob, sob "…everyone here has a family"…sob, sob, "…but I don’t."
I put my hands on his arm and said, “Yes you do. You have a family. What am I chopped liver?” That made him smile, he said I was the best and apologized for feeling sorry for himself.
I get it. I think in any situation there are a myriad of things taking place. I understand the voice of depression. I understand the loneliness and isolation. I get it. It’s not easy and I told him that being in rehab, no matter what anyone says, sucks!
I had hoped my youngest brother would show up, but he’s a big baseball fan and chances are he was at the game. I left at 5pm to catch the 5:30 ferry and he still hadn’t come by the time I left. I asked
Dad what he would do for the remainder of the night, he said he didn’t know.
I also get that our family has never been, never will be close knit like I always wanted growing up. As my best friend’s Mom said, “Fractured families don’t work.” I have had a longing for a close knit family all my life, I think it’s pretty staggering to look back at and realize how big a void that has been.
Everyone needs support and love, especially those lonely shut-ins like the elderly and disabled.
When I did go to church, it was a big thing to be either on the worship team or be a worship leader.
No one ever says they hope they get picked to minister to the disabled or elderly, do they? Not much glory or pride in that. But the need remains (and it’s a HUGE need!) and ministry is there too.
The facility Dad is in in quite lovely, but it’s still not home. There are no homey reminders, no belongings of his own. I understand how difficult it is to be patient and wait for healing if it ever comes. It reminds me of the last time I saw my Grandmother, similar sort of bare accommodations. A reminder we’re all dying.
I really wish we could have done something for Dad today, I did take him some roses from my yard and a card. Had I any forethought or knew how he was doing, etc., we could have made arrangements I think, to take him out for dinner. I would have to have at least one of my brother’s there to help get Dad in and out of the car. I regret not even thinking of taking him out in his wheelchair for a little fresh air.
I don’t know, this kind of work, this seeing other people’s needs is very easy for me. I wish I did more, but have to accept my going and being there was enough. It was hard to see him crying, knowing his own parenting skills, or lack of, helped form us into a distant, fractured, dysfunctional family.
We don’t talk much, never really have. I really don’t think any of us are meant to be cooped up and isolated, whether we be elderly or disabled. We still need the warmth and loving energy of people who care enough to love us where we’re at. No matter what, we still need to know we’re special and loved…but it has to be authentic!
It’s time for me to go settle in for the night, the trip to see him is 4-6 hours just in travel time to get there and back. I’m off to take a bath, drink some night time tea, and see how sleep is tonight. I’ve run out of my sleep meds, requested a refill but it hasn’t been filled yet…and I see I was just faxed a report to work on. Lord willing I can get out of bed tomorrow I’ll work on it then.
Good night folks, Happy Father’s Day. And extra helpings of blessings and peace to those for whom Father’s Day brings pain, regret, sorrow.
Tags: aging, depression, disability, disabled, dying, dysfunctional families, family, Father's Day, isolation, depression, loss, regret, sorrow
Back to the Beginning: Unraveling Family Ties (posted June 23, 2009)
Dad’s words and actions haunted me as I rested and recovered yesterday, I decided to call his wife and leave a message. We talked this morning and it’s just not that easy a situation to come to grips with.
We’re not close, we never have been, yet Dad has one of Barbara’s sons calling him every day to check on him and that makes us look delinquent. What do you do when you’re feeling manipulated? How do you react to someone who is emotionally abusive? I remember trying to talk to Dad years ago and couldn’t get through to him then either.
Barbara made the comment that Dad is worried about his kids because out of the four of us only one really has a job, my middle brother. Nice. And she added you can’t expect to rely on the government to take care of you (that aimed squarely at me.) I tried to defend myself saying all my plans got dashed in a split second car accident. Futile words, looking back now. I was trying to unhook myself from being responsible for my Dad’s emotions again.
I grew up thinking “Cats in the Cradle” was speaking to directly to our family, we all kind of grew up on our own. The family obligation is a tight rope to walk, if we don’t perform we’re bad kids, and if we do perform, we’re good kids. But it’s not authentic either way. We’ve never been good enough, really, ever.
What I’m really longing for at this time in my life is peace, something we sure didn’t grow up with, but my overall health requires now. How can one live in peace when you’re living a facade? Why can’t the tension finally be over and we all just be ourselves?
I feel like we’re doing the dance of denial, trying to make sure Dad continues to live in the shell of belief that we’re more of a family than we actually are. The simple truth is if I wasn’t related to these people, they’re not the kind of folks I’d choose to spend my time with.
It’s a tough call, we weren’t good enough for his Mother because we were all adopted and not her ‘real grandchildren.’ Our Mom wasn’t good enough because she wasn’t a ‘real professional.’ And Dad himself told me on many occasions he never wanted a daughter, visiting him again this last time, told me I was his favorite. Shifting sand. Never really knowing when we’ll be accepted or rejected and criticized.
I would like to find a way through this somehow and do the right thing, that’s why I’m here talking about it and trying to reason things out.
I am praying for and seeking a peaceful path through. Life is short, regrets can weigh us down. I wish to do the right thing without compromising my spirit or anyone else’s. I think this world is big enough for all of us getting our most vital needs met without the drama and conflict.
Oh yes, and I learned I was the only one to visit Dad on Father’s Day. Two brothers live on that side of the water and it’s not a 4-6 hour trip for them. So sad. Dad would have enjoyed the visit and we could have taken Dad out to a park and dinner. My brothers are missing out on life, may live to regret it one day, and are perpetuating dysfunction.
Tags: dad, family, family conflict, finding a way through, living with traumatic brain injury, peace, tough times
Back to the Beginning: Catch-22 and Why I Need a Miracle (posted June 26, 2009)
Of the few replies I’ve received to my “Rock the Quo” letter, the most promising came this week. Granted, at this phase in my life it’s difficult to have hope, but still…
The letter was from the local Salvation Army, the letter was kind, and the letterhead reads “Our mission: to save souls, grow saints and serve suffering humanity in Bremerton, Kitsap County, and beyond as God enables.”
They needed contact information since their firewall would not allow access to my email. In the letter was a postage paid, already addressed envelope and that made it so easy to get back in touch with them.
Major Baker called yesterday and left a message, I left the house intending on returning her call but wrote the number down wrong! So I called this morning making sure I read it correctly in her letter.
She asked some questions, and basically it still comes down to I need to have disconnect notices from my utilities and an eviction notice from my mortgage company. Wow. She was very kind, and I said she is running into this a lot, that’s why they try so hard to work with people, I’m in the Catch-22.
I said it seems so odd to me, trying to do the right thing, stay out of debt (except for the mortgage), living off my savings, but I’m in transition. I have a Disability attorney and we’re in that process, the work I’m doing is not reliable, and Unemployment is about to run out.
This is where the rubber is hitting the road.
I think because I’ve talked with so many folks the last several years, when you do find people who either understand or are compassionate, it is quite refreshing. This woman had a very comforting tone to her voice.
She said she’d check with their case worker to see if there’s anything they can do. I said I haven’t been able to find help anywhere. This situation is common, I’m learning, what I can’t figure out is why it is this way in the United States of America, Land of the Free, Home of the Brave, This Land is Your Land…etc.
I said it seems if I let things fall apart there is help, but not when one is trying to live right.
Maybe the lesson here is I need to let things fall apart?
I think I read somewhere the estimated amount of Brain Injured homeless folks in Canada is 50%.
We do fall between the cracks, but we’re not out of God’s hands. So I can’t help but keep asking, where is the help for us?
I find it interesting people will say ‘But by the grace of God go I’ when they hear of another person’s tragedy. But what about those who have faced, or are going through tragedy? God’s grace isn’t doled out based on condition.
I don’t know a lot of things, I seem to know less the older I get! But I do know things like Disability, chronic illness, pain, are teachers of the deeper things of life.
I am running out of options, last hopes, and I feel so danged helpless! I used to be the go-getter, the can-do person. Now I can’t even summon help to keep me and my animals from becoming homeless.
So many difficult truths to swallow, and try to embrace, and learn to love.
I don’t know what else to do. Other people have gone through this, and many more will, why isn’t there help?
We can pay our sports stars, entertainers, etc., millions of dollars but we cannot keep our citizens in their own homes. We value entertainment above all else?
Thanks for listening, this is certainly raw in my heart and I am weary.
My mortgage is now down to under $100,000, should I have to move I cannot buy anything for that, my monthly payment is $900, and in this market I could not rent an apartment for that.
The downward spiral continues and I seem at a complete loss to stop it. Is there no safety net? I can prove my need with documentation, and verify everything with doctors and care providers.
God help me, please…I need a miracle…
Tags: asking for assistance, disabilities, disabled, helplessness, home, homelessness, housing crisis, housing help, independent living, questions, salvation army
Back to the Beginning: Beyond the Discomfort / Still Asking For Help (posted June 28, 2009)
I’ve been thinking a lot lately about the quest for help and receiving none. I stopped at a church rummage sale Friday after my counseling appointment. It was a huge sale, but not too overwhelming because it was well organized and I went through things pretty fast.
When I went to pay the cashier, another customer noted how well organized everything was and how much work goes into this type of fundraiser. One of the two older ladies behind the cashier desk said they’re very surprised by this church, how they all come together to help out, she’s never seen anything like it. The other cashier said for being such a large church she didn’t feel like it was because everyone pitches in.
Out of my comfort zone, I asked if they would be able to help people who are about to lose their home. (Where did that come from?! I have a heck of a time asking for help in writing and now I’m putting myself out there yet again.)
One of the ladies said it’d be best for me to call the church and speak with the pastor and see if I could get counsel. The other asked if I didn’t mind, if she could pray for me before I left.
She mentioned how we all like to find meaning in everything that happens in life and I said I’m past that. She said we still want to know, though. She said sometimes God takes us out of our comfort zone to prepare us for ministry.
Okay, no offense to anyone as I am a Christian but I am finding I have more questions than answers. I was IN ministry. I may BE in ministry again someday but right now I am struggling and suffering and I’m looking for active, not passive, help.
Perhaps that’s a grand frustration of mine and mine alone, but honestly, knowing what us TBIers go through, or heck, even if I just had a friend who was trying her darnedest (disability or not) to keep her home, I don’t think I could just pray for her and wish her well. I would have to do something.
Maybe that’s the old Type-A person in me, I don’t know.
I just thought it was interesting she mentioned comfort zone. With Brain Injury I don’t know that we have one, everything changes daily, we learn and forget, have mood swings and a plethora of invisible struggles. Why do people feel the need to have OTHER people step out of their comfort zones when they’re so comfortable in their particular emotional or spiritual rut they’ve moved in furniture and sent a change of address notice! LOL! :)
I continue to ask and I continue to blog because I am still in great need of help and don’t know that I am asking for too much. If I could do this on my own, trust me, I know from experience it’s better to not have to ask for help!
But watching Extreme Makeover Home Addition and seeing a family who has fostered over 250 children and they absolutely LOVE the tough disabled cases, I cried. I am never really sure if I cry more because I miss volunteering so much or because I am in such incredibly deep need I cannot manage alone. I think it just hardest to see some people get help and others continue to struggle, face judgment, discrimination, and really, what I have seen a lot is people can’t get past themselves and see my need.
I think we all have much more in common than that which makes us different. Is there another human soul who hasn’t experienced suffering, loneliness, uncertainty and fear? I’m no different. Our situations may be worlds apart, but I can relate to you, why can’t you relate to me? It really is much easier befriending people who are different than building walls and barriers.
And I can’t help but think there’s really no hope or help out there for people like me who fall into these situations. There’s a lot of judgment, so much I could write volumes on it, but it does NOTHING to further us as individuals. We all say, sing, read about love, but can we? Can we really?
The judgment I hear, the people who want to fix me, make me like I was before (trust me, I’ve done the same to myself!) don’t help, but distance me from the life I so desperately need.
The lady who did not have age spots on her heart prayed for me and I thought that was sweet for her to do for a complete stranger. One of the things she prayed is God would make the crooked path straight, one of my favorite verses.
I would have to imagine the frustration of sharing my need and not having people help is nothing I alone feel. I am quite sure we often say or do things for/to others that miss the mark completely.
I want to do better than that. I want to keep opening my heart up wider and wider though it is dreadfully uncomfortable I do not wish to perpetuate the pain I’m receiving. If people knew, really knew, how much we are suffering, I doubt they could stand to let us remain in so much pain.
So I continue to blog and hope, and get my uncomfortable message out there and vent broken places in my heart in hopes of healing. I am a natural born fighter and though I am soul- and bone-tired, I don’t know how to give up.
Forgive me for offending anyone, that’s certainly not my point, I guess when you’re in pain just about everything adds to the burden you already bear and the loneliness you already feel.
I just have a hard time interacting with people who see my shattered heart and life, pray for me or not, repeat quotes to me or not, and let me go on my way. How in the heck is this okay, and why isn’t there a net to catch people when the rug gets pulled out from underneath them.
Yes, I would LOVE to be in ministry again, but that is someday. I am living in this very moment, this very moment is piercingly painful as this entire seven-year journey has been.
We really do have to get over ourselves, our discomfort, our judgment, the walls we put up to protect ourselves if we really are to change the world as we say we want to.
My heart is heavy from the tears, discouragement, frustration, and constant struggle just to survive. So much of life has been swept away, and I was okay letting that go, but losing my home, heirlooms of my late mother, the threat of losing my animal family is truly disheartening.
I guess I am now of the population of down and out, not because of anything I’ve done! There are reasons why we lose our heart and our spirits are crushed. I’m not unlike you wanting the safety and security of home, deep roots, to make a difference and grow as much as I possibly can.
It is the continual series of invisible (for the most part) losses, discouragement, judgment, criticism, people wanting to fix me, etc., that makes me want to die sometimes. It is the hope for new growth, a better tomorrow, staying alive for my animal family, that keeps me living.
We can either add or detract to each other’s life experience. We can bring good energy or cause harm, my bet is on healing, even still. But please don’t tell me to think positive thoughts, recite Scripture, recite quotes, etc., because none of that has saved me from this path. What I am doing and what I have done is enough.
If we are to heal, we have to get beyond our preconceived notions, our fairy-tale thinking, our Hollyweird induced patterns of thought and be more open. God loves us just as we are, why can’t we love each other’s spirit just as we are, accepting differences as a way to grow rather than isolate?
I am sorry if any of my messages make people uncomfortable, this is real life, it is my perspective, my life, my voice, and hopefully cathartic writing will aid my healing and grant me strength.
Judging, condemning, criticizing, whatever, may be comfortable, but I’ll tell ya, it’s not working! We have to get beyond the discomfort. We have so much to learn from each other.
Tags: asking for help, living with traumatic brain injury, perspective, seeking assistance, TBI, wondering
Back to the Beginning: Acceptance of New Reality and Cold Hard Truth (posted June 29, 2009)
I must be coming into some truth because I’m feeling that awkward stage of growth, perhaps it is the self-deception or hopes are waning.
Friday I met with my counselor and the folks who I had hoped being able to work for and maybe live on their property cannot afford to hire me. They have had to lay off people, so this, for now at least, is a closed door. If I could get on disability, it may be an option.
I think the well wishes and good intentions of people are probably coming from a good place, I just don’t think we hit the mark when other people are struggling and add distance and alienation instead of help. It is hard to see someone else struggle, but we need to acknowledge the heart and spirit of the person, they’re to be loved, not fixed. Maybe that’s why so many ‘friends’ leave at the diagnosis of Cancer, or whatever the difficult news may be.
I’ve had people try to comfort me by saying I hadn’t lost everything, and I would just add the word, yet. There are a lot of things we say to folks in hard times that really aren’t helpful at all.
I’m learning some of our deeply held religious beliefs can become barriers too. We seem to get caught up in fairy tales and fantasies, maybe God will do this or that. Maybe you can do this or that. If there is a maybe out there, I will get to it, but right now I’m in the definite present!
I think some of what I’m learning is freeing my spirit. I don’t think all religion is wrong, I don’t think all Christians are wrong, but honestly, I haven’t met very many flaky Buddhists, Jews, etc., and honestly that has me curious.
I think I’m learning the security I’ve been taught to crave all my life doesn’t exist and I need to find a balance between craving and aversion. I grew up in a very conditional home and still feel those conditions on my person to this day, but they haven’t worked before and sure aren’t working now with my limitations.
What I want now more than ever is to be well – emotionally, physically, spiritually, psychologically, etc. I want to help myself learn how to do some of the healthy things that add life instead of take away, or drain. And, to get beyond the struggle of just surviving day to day, I want to thrive within these limits.
This whole path of TBI, or I’d imagine any serious illness or health concern, brings to the surface a lot of universal truths. And I jokingly say were it not my life, this would be a great study in human nature!
I can’t really say what kind of comfort or verbal support I’d like to receive. I do get tired of people telling me things will get better because they can’t really get much worse. I think what I need above anything from folks around me is authenticity. I’m not asking folks to say anything they don’t feel, I am asking for help and could not find it. I want this to soften my heart, open it wider.
No cliches, no “well at least,” because I really think life has an energy all its own and we don’t control it. I think that freaks us out to no end, and makes all the marketers nervous because when we let go they can’t sell us anything to hang onto!
So over the weekend, I thought a lot about what my counselor said, cried, struggled, ached, and wept. I started to draft a letter to send to the friends I have left asking for help prepare the house to sell. My counselor reviewed it, I’ll have Brother Frank, and the Brain Injury support group I am a part of read it as well. I hope to launch it by the end of this week and get this ball rolling.
There are a lot of unknowns in life. This is where the rubber meets the road. This is where I have been standing on the edge of the vast Grand Canyon of life waiting for a light breeze to tip my entire life to the floor. This is where I jump and see if the quote is correct that a net will appear.
This is not of my choosing, but I accept it…okay, I’m in PROCESS of accepting it, to be completely honest.
The future is uncertain for every being on this planet, thinking otherwise doesn’t make it so. Denying I have a flipping Brain Injury doesn’t make it go away any more than my negating the laws of Gravity which I seem to enjoy testing and proving over and over! LOL!
The longer I live the less I understand of life, why people betray the strongest of confidences, why children suffer and die, why our best isn’t enough to change things, and on and on the list goes.
I do know there is a Divine thread that runs through everything and I’ve looked at this possibility for a long time. I guess I’d been living in the Hollyweird mentality that maybe a miracle could come true for me. Maybe it will, maybe it won’t. Hope for the best, prepare for the worst. Good advice.
People have often commented on my rather dim view of keeping my home despite my efforts. It’s because every other person I have known with TBI, unless they’re married and stay married, lose their home. I wanted to be the one to change that. Pride? Ego? Fear?
It was difficult talking with my neighbor this weekend and he was telling me next summer what changes they’ll be making on their house/property. It was hard to swallow I may not be here. Having roots is one of my big priorities in life, been nomadic, been there, done that, no longer have the brain or stamina.
I choose to accept this recession, this tough housing market, this goofy disability, all of it. This housing situation has been one of my biggest fears. On the one hand, it is terribly disheartening and difficult, but I also know at this point it’s unavoidable. We allow people to lose their homes in this society that worships entertainment. Strange, isn’t it?
It will probably be another year before I see the disability judge, there are no guarantees with this process either. I may be living on Welfare as much as I hate that and have fought so hard to keep from drowning financially. The system is what the system is. And yes, I have to accept that too, although I’ve fought that for quite some time believing folks would help, but this is real life, and I love the truth…even when it is ugly or unpleasant.
I have yet to figure out the perfect combination to unlock help in our world, I just know I’m not alone, it’s nothing personal, a lot of people are in dire need, and well, it’s human nature.
Tags: acceptance, housing crisis, housing help, living with traumatic brain injury
Back to the Beginning: Asleep in the Light (posted July 2, 2009)
[This is happening to me and I have a voice. How many hundreds of thousands (millions?) of people do I speak for who had/have no voice? I am literally haunted by this song, at times, I wish I weren't. The very heart of humanity is broken and crying out...and this is the perpetual interaction]:
Words and music by the late Keith Green
Do you see, do you see, all the people sinking down,
Don’t you care, don’t you care, are you gonna let them drown,
How can you be so numb, not to care if they come,
You close your eyes and pretend the job’s done.
Oh Bless me Lord, bless me Lord, you know it’s all I ever hear,
No one aches, no one hurts, no one even sheds one tear,
But He cries, He weeps, He bleeds, and He cares for your needs,
And you just lay back and keep soaking it in, oh, can’t you see it’s such sin?
‘Cause He brings people to your door,
And you turn them away, as you smile and say,
God bless you, be at peace, and all Heaven just weeps,
Cause Jesus came to your door, you’ve left Him out on the streets.
Open up, open up, and give yourself away,
You’ve seen the need, you hear the cry, so how can you delay,
God’s calling and you’re the one, but like Jonah you run,
He’s told you to speak, but you keep holding it in,
Oh, can’t you see it’s such sin?
The world is sleeping in the dark,
That the church can’t fight, cause it’s asleep in the light,
How can you be so dead, when you’ve been so well fed,
Jesus rose from the grave, and you, you can’t even get out of bed,
Oh, Jesus rose from the dead, come on, get out of your bed.
How can you be so numb, not to care if they come,
You close your eyes and pretend the job’s done,
You close your eyes and pretend the job’s done,
Don’t close your eyes, don’t pretend the job’s done.
Come away, come away, come away with Me, My love,
Come away, from this mess, come away with Me, My love.
Tags: apathy, inaction, Asleep in the Light, disability, disabled, ignorance, indifference, Keith Green, mTBI, TBI
Back to the Beginning: Winds of Change (posted July 8, 2009)
For the beautiful summer we’ve enjoyed here in the Pacific Northwest, it has also been terribly windy the last couple of days, knocking down branches big and small.
Not a bad analogy for life at this particular point. I will be focusing my efforts solely on survival (again), selling things, getting through the various systems offering assistance to those of us in transition.
The truth of the matter is this, there is no help when you’re in between systems. If there is a net to help people in my shoes, I haven’t found it. If you find anything solid in your travels, let me know. I’ve exhausted all avenues possible I could think of and have no reserves for chasing down dead ends.
From what I’ve seen thus far, one is either fully self-sufficient, or fully assistance-sufficient. Yes, I do joke with God and laughingly told Him I never took a vow of poverty!
I can’t predict how much I’ll be blogging or keeping this up-to-date at this point. The creation of it was to help keep me from losing my home and I’ve failed at my attempts. The stress is immeasurable and I know it takes its toll. I heard prolonged stress can damage the heart like smoking, high blood pressure, etc. Lovely!
I’ve learned my life is really up to me, the reasons I’ve been fiercely independent were honestly well-earned and learned. This is just the path I’m supposed to take.
I’ve not sent out the letter to friends yet as I have been awaiting a response from a friend. Makes one wonder where everyone is. Seems we are all struggling in this economy, and moving apart instead of together. I just re-sent it to her, hopefully…
A lot of difficult decisions to be made, one at a time.
With loss of home and resources I would most likely lose my internet connection to the world. If I can get to a library, I could use their computers for 1 hour each day.
We’ll see what happens, shall we? I need focus and energy to keep myself from crying so much because it drains my brain budget which is premium right now.
Thanks for listening everyone.
Blessings, Love & Peace,
Tags: brain budget, crisis, fear, housing crisis, letting go, living with traumatic brain injury, mTBI, PTSD, TBI
Back to the Beginning: Do You See My Heart? One Beautiful Transformed Life!
(posted July 12, 2009)
A couple weeks ago I met and pet sat my neighbor’s animal family for the first time. Two small dogs, and two indoor-only cats. The two cats and one of the dogs took to me immediately. The little dachshund, not so much! She growled, barked, and yes even bit me. It’s not very often animals don’t like me, this astounded me!
With her nipping (not really biting), I told her I wasn’t there to hurt her and she can take all the time she needs to get used to me. The human dad told me this is normal, and basically you can’t train dachshunds; expect her to poop and pee on the floor as part of this inability to train. He said in order to get her to do her business outdoors you basically have to yell at her. I don’t work that way. I could give command, but not yell.
Being so close, I visited every couple of hours because I was worried about them…I know, I know! I would let the dogs outside and was surprised they didn’t have any toys. Maybe having a playful lab/mix dog 24/7 has trained me! It got to be quite fun to go over there, let them out, and eventually even the dachshund found I had redeeming qualities. I gave her time and space, and she gave me trust.
They would just go outside and lay down and I thought that’s pretty boring for dogs, so I started a little game of “let’s go run and play!” I kept it light and fun, I am quite sure I would have looked pretty funny if the fence wasn’t there.
When the dogs did their business, I praised them, and the little dachshund lit up with that!
I gave her time, space, tried to be as kind and consistent each time whether she growled at me or bit me. In return, she softened, her whole demeanor and body language changed. It was wonderful. That has to be my favorite part of working with both animals and humans, when you make a change for the better.
The next time I went to visit, she came up to me while I was sitting on the lawn and she jumped in my lap!! Wonderful, I’d made a new friend! She is a sweetie pie. It was lovely, that change, you know?
As I go through this painful process of letting go of the home I love dearly, I wonder if people can see my heart. Can they feel my heart like I did that little dog? Can they relate to me with compassion and kindness, rather than judging and criticism? One way adds life and healing, and the other adds death and distance. I realize everyone has their hurt, and their own stuff, but when it comes to ‘helping’ another, so much of what we do doesn’t work.
I wish people could see my heart as easily as animals do. I’ve been told a lot of things on this path, such things as I haven’t prayed enough, or whatever other religious “should” without knowing me or what goes on in my spiritual self. Those who haven’t been on this path cannot encourage from a place of knowing, it is really that simple. Those who have been on this path speak from the heart, not the intellect; they reach out instead of building walls and barriers.
For helping anyone else, animal or human, it’s best to think what they’re going through and find out where their heart is. You may just be surprised to find beyond that ‘ruff around the edges’ type of dog or person is a good, misunderstood heart just waiting to be discovered…and softened.
Tags: being human, compassion, consistency, dogs, empathy, forgiveness, fun, judging, kindness, labeling others, love, open heart, patience, playing games with dogs!, time, transformation, unconditional love, understanding
Back to the Beginning: You’re Invited (posted July 12, 2009)
This blog will continue as the journey is clearly not over.
My counselor wisely suggested I continue to blog as I need to have something of my own that is not threatened by loss…even though one of my few remaining ‘friends’ betrayed my trust and made me think about discontinuing the blog altogether.
The winds of change are blowing hard and I’m readying for the storm. I figured I can let go of my house, but my pets, no, that simply is not acceptable.
Like the kid I heard screaming in the supermarket today, “I don’t want to”, I realized that’s me letting go of the house. But like children, we are often made to see things differently…
You’re invited to continue this journey as I try to find a good life for myself post-injury.
Tags: betrayal, blog, friends, moving on, mTBI, TBI, things that cannot be taken away, trust
Back to the Beginning: Gardening Class and Learning (posted July 13, 2009)
I attended a gardening class tonight, it was two and a half hours long and one of the few classes I’ve even tried taking post-injury. It was pretty overwhelming, and like I’ve experienced before, a little embarrassing.
I thought I knew where it was being held (oh this lovely brain of mine!) Fortunately, it was on the same street, but not the location I thought it was to be at.
Having been a social kind of gal before, I tend to be much more reserved, yes, awkward, and shy, never knowing what I will say or if what I want to say will come out right. It’s not very kosher to lose one’s train of thought in a conversation or not be able to keep up with the conversation.
Then I thought, maybe the quieter life is best for me, not too much people interaction, and I can try to take on the more reclusive role, speaking mostly to animals and plants. Kind of a radical change for the old Type-A, Go-Getter in me! But, at least the only one who would know I’d embarrassed myself would be me, plants and animals are able to forgive human frailties.
This is real life and about acceptance. To continue thinking a better life waits for me somewhere out there, I miss living in the moment which is all this brain can take right now.
I must rest now, I am terribly tired from just that class. It was nice to be around earthy, authentic, nurturing people, though, I must say. :)
Blessings, Love & Peace,
Tags: animals, disorientation, earthy, garden, new learning, peace, present moment, processing new information, social interactions post-injury
Back to the Beginning: One Step Closer to the Edge (posted July 14, 2009)
Today I took a deep breath and called my oldest brother to see if he wanted anything from the house before I start selling the family heirlooms.
He asked why I was needing to sell them and I said I pretty much only have a few months here at the house unless Divine intervention.
He said it’s not a good time to be selling the house, I said it hasn’t been a good time and chances are things aren’t going to change overnight. He declined taking anything saying he has no room for it and I could use the money and go ahead, just do my research as I am.
That’s two no’s from two brothers, the third brother I will not ask because I know better…
It was a short call, maybe ten or fifteen minutes, and with the anxiety pent up I played with my dog, and stood in the doorway of the back deck leaning my head on the door. I am moving closer to that Grand Canyon I’d tried so hard to stay away from.
I had to get out of the house so took myself for a hard, fast walk, until my Achilles Tendon acted up, which was only after about five minutes. The massage therapist told me to ice it when I got home today and I forgot until the walk.
She had told me to be mindful of the pain and not overdo, so at that point I turned around and headed home. Having grown up with all men, I think sometimes I handle things like guys do and have to do something physical. I am petrified, no net to catch me and like so many times before, going through most of this alone.
My brother said maybe Dad could help me, but I know he can’t. He bailed, or tried to bail my third brother out and he lost a lot of money. I told him Dad’s days of helping us financially should have long been past. He’s retired!
My emotions roll like the waves and sometimes I just want to throw up! How does a person get down and out without being down and out? Everything changes. It’s sad to get rid of so many things, but this spiral seems to have one direction and that’s down.
I filled out the DSHS paperwork today finally, after several tries at getting it done, the Unemployment paperwork is completed too. I have to take the DSHS stuff in tomorrow as it’s due no later than the 15th, which I only discovered today.
The emotional side of this is tremendously difficult, of course. We don’t have as much control over things as we think we do, or would like to think we do.
I have taken photos of the kitchen table to research and list on Craigslist, next I’ve got to find a reliable dealer for the odd treasures like the records of Hitler’s speeches in the Victrola. I’ve loved that Victrola since I was a little girl, but maybe my attachments are to things because our family wasn’t/isn’t close.
It’s amazing the path we take when we face a significant amount of pain that doesn’t seem to have an end. I try to find comfort in food, exercise, sugar.
Sleep is becoming sporadic as stress and concerns rise. Up at 2am, can’t sleep, may be up for a bit and then sleep again. I realized I haven’t really been eating, gosh, since maybe like March! That’s when I noticed it at least for the first time.
I think acknowledging I am depressed, petrified, anxious, uncertain, etc., helps…after all I grew up in a family with no emotions who never talked!
My chiropractor gave me the MRI of my brain and spine taken in March. I’d asked her for a photo of my brain, she said she could give me the CDs which was nice. So, clipped to my monitor is a side and top pictures of my little brain…to help me have compassion for all its gone through, and, try to remember the words of the chiropractor, “That’s your beautiful brain.”
I’ve felt my brain has betrayed me and that’s an odd thing to try to get away from, there’s no running! But we’re on the same team, and a time for compassion and self-love is probably long overdue.
The bootstraps have long been gone, I have to pull myself up by my heartstrings now. On my walk I tried to help myself see there will be an after to this story, I will be okay, I tell myself.
I will let myself rest, and do what I need to do, even though it really feels like my world is falling apart. I don’t think this is God’s will, a need for me to learn something, lack of faith or this is direct punishment.
I think these things happen because good people stand by and do nothing. We can have our iPods, computers, cell phones, fast food, a plethora of emotional and psychological problems, heck, we can send people to the moon but we can’t keep people, even our most vulnerable population, safe in their homes.
And honestly, I’m struggling to keep my faith in God and His people for allowing this to happen and not intervening. Love? They will know us by our love? Not so sure. Sounds good. But in reality? Not so much.
I try to stretch myself and know a greater portion of our world lives in constant uncertainty, but I try to also remember this is America…home of the free, land of the brave, one nation under God and all that.
I really think we want to believe we’re doing better than we do. In fact, I stopped at the library today and went looking for the Yoga Journal I’d seen at the chiropractor’s office. I happened to glance at Parade magazine as there was a man on the cover with two children wrapped around his neck. He looked vaguely familiar. It was Bob Woodruff. It was an article his wife wrote about the miracles in Brain Injury science. Couldn’t bear to read it because I know that is the exception, not the rule. Makes for great press, but as all things with Brain Injury, individual results vary, especially when you’re not a celebrity!
I even got a letter today from the Justice Department and according to the Disability law, they cannot help me nor can they suggest any other federal agencies. Yup.
Into the storm I go, tonight I hope for rest, tomorrow is another day.
Tags: craigslist, disability, disabled, foreclosure, Grand Canyon, homelessness, Hopelessness, mTBI, PTSD, selling everything, selling heirlooms, TBI, traumatic brain injury
Back to the Beginning: Update (posted July 18, 2009)
A lot is going on at the same time!
I have posted quite a few things on Craigslist and not a one has sold. It is definitely a buyer’s market, a great time to get ‘screamin’ deals’ as a former co-worker used to say.
I think I currently have three eBay auctions running and two of the three will sell at this point, near or below what I paid for them. Tough economy, any cash flow is better than none.
My Unemployment is currently exhausted, I may be eligible for the Emergency Unemployment Compensation.
My dog’s Cancer bumps have come back and it’s a tough reality. My counselor loaned me some money to buy greens and produce so I can start juicing again. I now have a “Rudy Foody Fund” just for that. My dog has been pretty lethargic the last couple of days, it is wait and see, live in the
moment, trying to remind myself to simply breathe.
My friend Kathleen and her boyfriend have offered to help get the house prepared to sell. I’m always hesitant sharing such news because, well, it’s better to see it first, then I’ll believe it. I’m sure you know what I mean, everything changes when we’re not so independent.
At any rate, I spent a good portion of the day (minus naps!) working outside trying to get the outdoor fireplace (free from Craigslist), cleaned, scrubbed and painted. Ran out of high temperature paint so have a good base coat, went to WalMart tonight to grab another so tomorrow or Monday will be good to go.
Can’t tell you how long I’ve had this fireplace sitting outside with all the best intentions in the world! Having the outdoor fireplace will be a good (I hope!) selling point, as well as it will help me burn (when the weather cools a bit) a lot of paperwork I’ve been saving just to destroy safely.
And if it’s not a good selling point for the house, maybe I can recoup what I’ve spent in gas and paint, or if not, just have some cash flow.
I have to believe everything is going to be okay, that I will have a home and get to keep my pets. As a friend said, “they have to give you your Disability eventually.” I feel like I’ve become so jaded when I reply, “Yeah, but they don’t care of I’m homeless or not!” [Terribly true.]
I saw a 1982 27′ non-running motor home for free on Craigslist and that gave me hope that maybe one day soon things will work out in a non-conventional, affordable way for moi. It just made me think of possibilities and maybe, just maybe, not having the huge financial stress and drain that accompanies ill health and/or injury…and I could actually get back to the fine art of just living, not surviving. Nice!
I’m listening to Pema Chodron’s audiobook from the library again, and one of the first things she talks about is how she received a pith instruction when she was just six years old. Pema had been angry, feeling unloved, lonely, etc., walking down the street past a neighbor’s house kicking stones with her head down.
The neighbor woman said, “Child, don’t let the world harden your heart.”
With my memory, I often forget this and then listen to the audio book again and it is a life lesson. Even though I have the book, I still listen to the audio because reading just doesn’t stick like it used to. (I have to say, it’s weird to forget so much because it’s like the bad joke that with Alzheimer’s all jokes are funny because you don’t remember hearing them before!) Hearing this helps chart the course for my heart although the path is about as ugly (to me) as they come!
Next weekend is a Foreclosure Prevention Class I’ll be attending, or maybe I’ll just call the 211 number and see if I can get help closer without the hour drive each way. That’d be good. At any rate, yippee, more paperwork, documentation, forms and questions!
Tonight is rest, brain is tired! I think the three-day migraine that ended yesterday is due to neck stuff…not sure, but heck, I’ve tried everything under the sun and none of it worked.
Blessings on y’all, thanks for being here.
Tags: brain fatigue, despair, disabilities and independent living, emotional exhaustion, home, migraine, open heart, PTSD, stress, update
Back to the Beginning: Oh My God! Oh My Gosh! (posted July 19, 2009)
Oh my God! Oh my Gosh!
My aspiration was to send the fundraiser link to all Kitsap County and surrounding area service organizations and to local area churches.
Enter Brain Injury…
I spent the last several hours researching, copying and pasting email addresses into the fundraiser site’s email program and I clicked the “x” button instead of the tab and it closed out and ALL IS LOST!!!!
Welcome to my world, this is Brain Injury at its finest. It’s tough enough to do something once, but having to go back and re-create it, oh Calgon, take me away!!!
Brain fatigue strikes. I knew I needed to take a break, and was getting too warm up here, but was afraid if I did I’d lose all the research I’d done, guess the brain wins again!!
Drats! Drats! Drats! And it had been a relatively good day…sigh! This is one of those disheartening things no one sees with Brain Injury and no, sometimes I can’t pull myself up by my bootstraps because this is an endless cycle of trial and error (more on the error side). Dang it!
I was nearly shaking doing this anyway, it’s tough doing this for myself. Easy to do this for someone else, this process is definitely stretching me like I’m some rubber band! LOL
Foiled again, oh my gosh…what’s the proverb about falling seven times and rising eight. Well, drats, must try again, after naps, rest, food, etc. Brain Injury just flat out complicates the simplest things in life.
Breathe in, breathe out, breathe in, breathe out, acceptance, swallow hard, take a break, lose courage, find courage, and try again. Phew, who needs to exercise when life takes this much work?!
Back to the Beginning: Warrior Heart (posted July 19, 2009)
Listening to Pema Chodron has been a slow, life-changing experience. One of the things she talks about is having a warrior’s spirit or heart. These are not aggressive warriors, but they hear the cries of the world and try to bring relief. That touches my heart every time I hear it.
I called Dad today as I’m trying to do most every Sunday at about the same time. Today I didn’t want to at the appointed time, so let it go and that was that. Later I decided to call him when I felt up to it.
He is still in rehab and will be there quite some time, no timeline given yet because healing in old age is slow. Waiting on healing is tremendously difficult for us human types, can I get an AMEN?!
The few times I’ve called him I’m never really sure where his mind is, if Alzheimer’s is taking over, or if it’s the medications. I try to make light of things, talking about the nice weather or the hummingbirds. He asked how things were with the house and I said I wasn’t worried about things. Nope, not going to mention how things are because he cannot help me and my telling him won’t help him.
I think listening to Pema has really made some big changes, like the phrase “it’s up to you.” Instead of waiting and asking for help, just mindfully plow through. I think I like that. I think I really can get stuck and start to stagnate and get to a bad place fast. Guess depression and independence do that, but as long as I keep moving, keep doing some thing, I’m better off.
I told Dad I’ve never asked for money and I’m not going to start now, he said he appreciated that and if he can help he would. I said I don’t expect it and as far as I’m concerned, he’s done enough – fought in WWII, raised four kids, etc. I said his days of financial assistance should be long over, I’m 42 years old for heavens sake!
I’m sometimes not sure if he remembers he repeats himself, or if I should mention it. It’s kind of funny the two of us going on the repetition merry-go-round. He did sound more cohesive this time and not as repetitive. I think just being present for another human being, no matter what they’re facing, is a huge gift.
My dog Rudy has been more lethargic today too, I asked her yesterday morning when she didn’t rise if she’s trying to tell me it’s time for her to go. A lot of questions come to mind and I have to do the right thing. She hasn’t been as excited for food or just about anything lately and a little more labored in her breathing.
I try to just be there, lie down beside her on her doggie bed or carpet, where ever she has settled, and try to tell her it’s okay to go, this is part of the process and love doesn’t end here. They do so much for us out of selfless love. The excitement of having a new puppy and the letting go of an old dog are all part of the same story.
She allowed me to take her in for Cancer surgery two years ago and that extended her life, and kept me from having to face that terrible loss. I tell her I don’t want her to go, ever, but us humans seem to have to stick around a little while longer. Animals seem to be completely unafraid of death and accepting of life on life’s terms. It’s just tough, facing this at this time. Perhaps I’m not a warrior yet, just a warrior in training!
Living in the moment, being fully present for self, others, my animal family, I think that’s a good thing. Not easy, but I want to keep my heart open instead of hurt and hardened by life.
I’ve filled out a form for Consumer Credit Counseling online (goofy since I only have the mortgage debt), but need help. I also tried to fill out a form for American Financial, but I didn’t fit into their categories so closed out of it, apparently just the contact information goes through.
How goofy it is there’s no help out there for homeowner’s who have done the right thing. If you default, there’s help. If you get eviction or shut-off notices, then there’s help. Drats, I’ve been trying to keep myself from this very thing. At any rate, still selling on eBay and craigslist and the wild hair got the best of me and started my own online fundraiser.
Desperate times require desperate measures, even for warriors-in-training!
Tags: Cancer, dog, friends, grief, letting go (trying), life with TBI, mTBI, my dog rudy, pema chodron, saying good-bye, warrior
Back to the Beginning: A Good Morning (posted July 20, 2009)
I have to say this is the best I’ve felt in a very, very long time. If I knew the magic combination to feel this well all the time, I’d bottle it up and sell it. But honestly, this is about how I felt before the car accidents.
Granted, I’ve been up since 3am, but it’s only been a couple hours and I’ve gotten a few more craigslist items together and am ready to call Consumer Credit Counseling or whatever home help I can find.
Today will be another warm day, so have the windows open upstairs and the drapes drawn downstairs.
Rudy also seems to have quite a bit more energy this morning too, so that makes me absolutely giddy! She’s back to being what I call “my obnoxious doggage!”
Much to do, my list seems to grow longer and longer. As Pema Chodron says, “It’s up to me”. I think my expectations for help are tripping me up, I do know other people receive help and I’ve helped others in the past, but this is a big new life lesson about people going through stuff alone. The Bible wasn’t joking when it said, “Be strong and courageous.” Holy cow, I never knew life would be THIS non-stop challenging.
I am thoroughly grateful for this good moment, to feel as I once did all the time.
I do not wish to be changed by all this hardship, I want to continue to learn how to let the painful moments soften my heart and teach me compassion for myself and others. So much to learn!
I am still challenging faith or whatever one calls it by giving things away to St. Vincent de Paul and freecycle. There is a stirring in my soul that I still wish to be generous and giving despite any economic challenges. It feels good to be useful, to make a difference.
Back to the Beginning: No Good, Horrible, Terrible, Very Bad Day (posted July 20, 2009)
There are times when I get weary from the ongoing struggle and completely relate to why we turn to drugs, alcohol, TV, food, sex, whatever offers us momentary comfort.
I really understand Pema Chodron’s talking about the wisdom of no escape, but I also think as humans we do have our limits, and today, well, was a good example.
I felt pretty accomplished for having submitted inquiries about financial help (although it does not seem credit counseling services can help when you have no other debt – I may be wrong, but so far, that’s what I’ve found.)
I then called the hospital to figure out where we are on my owing them $650 for last month’s migraine and trip to Prompt Care. They received my application for hardship and now I need to contact Unemployment to get the last 30 days income and recent pay stubs. Okay, will pace and plan to get that done, phone calls knock the wind right out of me.
I then called my primary care physician’s office to see if the psychologist I’d seen (and who understood invisible disabilities) could recommend a new PCP (Primary Care Physician or in my case, Primary Care Physician’s Assistant) for me since mine left last month.
Nope, can’t do it. As of yet, no one has replaced my pcp, and he doesn’t know all the providers…oh whatever. I then asked about what will happen when I need to get my prescriptions refilled, she said I need to have that go through a provider. I don’t have one now! Wow. She said for me to have the pharmacy fax the request and if at that time, depending on the medications, I need to have an appointment with a new pcp, they’ll call me and let me know.
I got off the phone and said out loud, “We so do not live in a proactive society!”
I then called the local 211 number to see if there are any resources for avoiding foreclosure. She gave me the number of the agency that helped me last year with utilities. They, St. Vincent de Paul, and Salvation Army are all out of rent/mortgage assistance money and are waiting on federal funds. She apologized. Same story, different day.
She did say that she heard local churches are trying to help, maybe they could help me for a month, or whatever, if I had Internet access to Google our county churches and start giving them a call. That’s when I started the whole massive research online project that ended with a big FAIL!
I took a break, played with the dog after my major faux pas this afternoon, watched the news, fed the animals, and felt I really wanted Mexican food. It’s not very often I actually have food cravings and this time I went for it, let myself out of the house, to escape.
I knew it’d be kind of an expensive and extravagant moment, but heck, I think the last time I went out for Mexican food was in March when I discovered by eating out that I’m probably not eating enough. I inhale food in front of me, but preparing food at home is a chore as a single overwhelmed disabled person.
I ate, went to the bank, got money for gasoline, put $30 into the gas tank, Post Office, and drove home. If I had known the next few moments would continue in the downward spiral, I would have opted for tuna fish or peanut butter at home.
A lot of folks talk about Serendipitous moments when everything comes together, well, having been on the losing side of a lot of unfortunate events post-accident in 2002, I also see how things come together in a not-so-lovely way.
Windows down, it’s a hot day. At a stoplight not far from my home a police officer in the car next to me says my name and I said, “Yes,” thinking I hadn’t done anything wrong and he couldn’t cite me for anything.
He said I have two different license plates on my car. This is true. The car got totaled out, they make you pay for new license plates, the back one I could remove and replace, the front one is rusted on! I tried using a spray oil solution that is supposed to loosen rust, but alas, the rust won and I gave up after spending a whole heck of a lot of time and frustration on it.
He said I have to get that replaced. I threw up my hands and told him I’d tried, he continued that I have to get it replaced or I’ll get a ticket. The conversation sort of ended, and then I asked him if he knows of a mechanic that will do it for free. He said no, he usually does his stuff himself, I said I usually do to, but this time I couldn’t.
Forgive me if I seem to be a wimp or complaining, I just thought I’m doing the best I can. I had just gotten word at the Post Office DSHS can’t help me because I have too many resources! So that means they will not help with medical expenses or cash, I don’t know about food benefits, and honestly at that point, I couldn’t breathe so left the Post Office immediately and headed for my ill-fated conversation with the officer.
There are reasons why when people ask me how I’m doing I say I’m fine, or I’m doing well, because the truth is just so blasted negative even I get tired of it! Now keep in mind, this has been going on since 2002, a friend I had gave me a little sign at Christmas 2003 that said “Stress no more in 2004.”
I kept that note in my notebook cover for the longest time and finally tossed it a year or two ago when I realized that didn’t happen, and my hoping for things to change was hurting me. Even she thought I was under some sort of attack at that point because too much weird stuff had just been going on and on and on.
So here I am with my new found sense of independence believing it’s really all up to me and I can’t get a frickin’ break.
Overwhelmed and shocked, I didn’t even make it home before the tears starting rolling.
Where in the hell is help? I’ve been patient, understanding, probably too much…this is insane. Any wonder why us TBIers struggle so much? And today had started out as a good day, really, the best I’d felt in a long, long time.
Still taking deep, deep breaths…the pain just absolutely shut me down, even a happy dog and a purring kitty couldn’t reach me…for a while. I know I’ll probably forget this, and it’s best for me to process it as well as I can and let it go, but wow, life can knock the holy heebeejeebees out of a person.
Why God allows so much stuff to happen is beyond me, I don’t think us people in the U.S. are blessed because we’re better, obviously we’re cut from the same cloth! But I think we’re given so much to help others and weave strands into the net so none of us fall too far. This does toss my nice, tidy thoughts of spirituality, humanity, etc. to and fro as I wander this ambling path. What about when God doesn’t come through for His kids?
Now we know the piercing cries of the people starving in Africa and the desperation of the people who experienced Katrina, 9-11, etc. It’s exhausting when you can’t change the channel to something less unsettling, or fast forward through the gory parts of your own life!
I wonder why all the struggle, really. If this is a spiritual struggle, why is a little disabled woman such a threat?!!! What in the world? I’ve NEVER heard of any other human being going through so much with any sort of positive outcome. Sometimes life just doesn’t make a turn for the better.
It is hot up here, I’ve got the windows open, fan blowing, my little gray kitty (nicknamed “Baby Bear”) is fast asleep on the desk, my keyboard is in my lap (yes, my animals rule the house!).
I really need to end this day to get it behind me and try again tomorrow. Phew, what a day.
Tags: brain budget, defeat, emotional stress, exhaustion, hard times, losing hope, mTBI, PTSD, struggle, TBI, terrible timing
Back to the Beginning: Recovery, Searching for Answers, TBI Picnic
(posted July 21, 2009)
I watched a little bit of a movie on FX this afternoon, Jennifer Garner, I think it was called 13 Going on 30. When I tuned in, she had just been transformed from a teenager to a 30-something woman.
I had a little trouble following the story line, but wow, her confusion about her own life was something I could relate to! I did not watch it long, but found it quite engaging.
It is weird when one’s mind plays tricks on itself, or that is what it seems to be doing because we “know” we’re just not like that, or find our own behavior confusing.
Last night my dreams were about heart attacks and Brain Injury, isn’t that lovely? One I was in the hospital where all of us had had heart attacks and I was concerned about my recovery, selfishly saying I didn’t want to recover like those I’d seen. Nice. Then I dreamt I was telling someone my head hurt when I woke up, sure enough my head hurt. What in the world?!!
Today was a slow going day, not only do I do things more slowly post-injury, but the recovery time is longer too. The drain from the emotions of yesterday, and heck, last night too had me exhausted. I woke at 2 or 3 am, got one item boxed and weighed for eBay and went back to bed.
This afternoon before my massage and chiropractor appointment I stopped by the library to ask the Reference Librarian about anyone in the area who appraises antiques or estates.
It was one of those enlightened moments, she was patient with me, sometimes I know what I want to
say, but can’t get the words out fast enough. She gave me the name of the antique store in the next town over, said she just had someone else asking her that same question, a staff person recently went through that, and said they take quite a percentage.
I mentioned how odd it is how we revel in how much things are worth but you never really get that much, you have to get a dealer and so forth.
She suggested if there were just a few things to sell them on eBay myself or, she had a friend who hired an eBay seller to sell the things for her and they took 50%! Wowza. She said the good thing with that was they did all the work and the only thing her friend had to do was deposit the check.
Cha-ching, that sounded nice.
I mentioned the records of Hitler’s speeches and she said that’s something a museum might be interested in, and if they take them, they will help you through the process of tax write off. That’d be nice.
She also mentioned she didn’t know how things would sell in this economy. I thanked her, and it was interesting, she thanked me back. It sort of felt like a divine appointment, it was just different.
I heard back from one of the credit counselors and he suggested I find out if my mortgage is Fannie Mae or Freddie Mac (who came up with those names?!), and if so, I’m eligible for a restructuring, I think he said. He was very kind, but man, did I get overwhelmed in no time!
I’m following another lead to see if there’s help out there in this big world, so we’ll see.
I have to acknowledge the good as well as get sideswiped by the bad. My dear counselor is helping get the word about the fundraiser, bless her heart! I’ll get back in the saddle and try again, phew boy, the error part of the trial and error really bites!
And I have to say, my little gray kitty, whose photo is my avatar, he was unusually snuggly last night. I got the sense he was really trying to get through to me, like, “hey, I’m here, it’s going to be okay.”
He laid down on the desk here and used the mouse as his pillow, it was the cutest thing I’ve ever seen, he’s never done that before and I so wished I’d had a camera! He purred like crazy and gave me kitty kisses. There was just that look in his eyes of connection, and I’ll tell you, I may have ‘rescued’ this cat when he was a kitten, but I really think he rescued me time and again.
And, on the good notes here, I managed to finally get my office window open! It’s an older house with the push up type of windows, and it’s been stuck for quite some time. It dawned on me to use the rubber mallet around the edges, and, apply some of my frustration and anger and it worked! I now have the fan up here and the temp has dropped from 90 degrees to much more enjoyable and tolerable 75.
There is a gal on Twitter who makes jewelry out of broken tea cups, I’ve got two I’ll be sending her.
I’m going to send some of Mom’s jewelry too, that I can part with. I had to close out my safe deposit box, and honestly, I know I’ll never wear most of it. It feels good to give things away that others can get good use out of.
I’m still challenging the spiritual principles of this world by remaining giving and thoughtful, I don’t want hard times to harden my heart. And honestly, the goofy thing about the terrible times lately?
On a whim, I sat here and wrote out some affirmations for myself and some of my attributes and put them up above my computer. The timing is just odd, to do something self supporting and get body slammed by life, isn’t that just odd?!
Tomorrow is the Brain Injury support group picnic and in the morning I’ll be calling my mortgage company. My home was a repo and looking at the documents all I can see is it’s a HUD loan.
More shall be revealed, thanks for riding out this heart storm with me. As my chiropractor’s newsletter quoted, “You can’t change the waves but you can learn to surf.” (LOL…but what if you have a Head Injury and can’t learn nor is there any way you could possibly tolerate riding the waves?!)
Tags: beloved pets, perspective, processing life with TBI, recovery, update
Back to the Beginning: Brain Injury Support Group Picnic (posted July 22, 2009)
Just got back home from the picnic, fed the animals, and I am SO tired! Oh my gosh, brain fatigue is such a weird bedfellow. I rested before I went and really had nothing major on my list today other than call my mortgage company, and I’m whooped!
The answer from the mortgage company is I have a Freddie Mac loan, so according to the consumer credit counselor guy, I should be able to get someone to mitigate my mortgage for me. I sure hope so because I’m feeling terribly overwhelmed and need some definite 3-D help!
The picnic was nice, I took beverages, bottles of water that were 3/$1, a few sodas, a small cooler, and myself.
We all got brain fried from the moment it started because we were at the wrong place. The Social Worker came over and said she’d been there since 3:45, but we couldn’t see her and she couldn’t see us. The barbecue was already started, so the cook stayed there and we all moved everything to the other side of the park.
I appreciated Janice help cut through the mental clutter because there really is nothing quite like a group of confused, questioning TBIers! :-)
I wasn’t sure how much I’d end up blurting out about my situation or if my brain would choose another path. The Occupational Therapist asked how I’m doing, and well, that’s a huge question right now. I simply said, “The good news is the end is near, but that’s also the bad news.”
She was pleased to hear about the online fundraiser I’d started and a couple other folks encouraged me by telling me I should get an advocate because they were definitely helped, and forget about attorneys. An advocate, he said, cuts through all the bureaucracy. It was nice to talk to someone who has experience not just advice, in what works.
I also spoke with another Brain Injured person’s mom, she suggested I look into getting a roommate, the right connection might just be out there. I tried to explain my ‘normal’ and her ‘normal’ aren’t at all the same and what may have worked for normal folks would push me over the edge. I’ve looked at all options, honestly I have, I don’t want to lose my home, no one does!
On the one hand it was a nice break to not be stuck at home fretting about how to make this all happen, and it was also nice people remembered and asked me. I guess not everyone goes around in this world forgetting as much as I do! It really is still quite odd to me to have people talk to me about conversations we’ve had before that I have no recollection of whatsoever! Talk about feeling vulnerable!
I’m going to contact the Occupational Therapist about the advocate that was mentioned to me, I’ve been told this story before, this time it was nice to hear it from the person directly. He said his advocate was able to go back and get benefits from the day before his injury. Wow.
I said that’s the tough thing with Disability, because I have worked, they say I CAN work. I’ve been injured since 2002 and killing myself to keep afloat. It’s not that I’m lazy by any means, or looking for a handout! He kept saying that’s why I need to get an advocate. So, yes, will pursue that avenue tomorrow, I hope.
I am fried as fried can be, but didn’t want to leave because it’s so rare I get to socialize and be around other people. I might not even say anything, but it’s great we can talk heart-to-heart about things that affect us.
I’d shared about my not eating and we joked how we know that doesn’t work! There’s some connection between the stomach and the brain, no food, no fuel. But it was also neat to talk about how we eat or don’t eat when we’re depressed. We all shook our heads in agreement, and I think it’s quite liberating to face the truth unashamed. No masks there, quite nice.
Oh goodness – two more things before I forget, and they’re good things.
I thought I was dreaming that I’d seen my food benefits increase from $60 to $200 – it wasn’t a dream, it’s real!! I can buy produce again! I’m so excited!!! That’s pretty much all I ate tonight was strawberries, banana, sugar peas, carrots, broccoli. Divine!
I heard from my friend Kathleen, she is not going to have the kids she works with help out, her beau is part of the Masons and she said they’re willing to help me prepare the house for sale.
We’ll see what happens, it was nice to get to socialize and take the blinders off of what I’ve been missing and rarely allow myself to see. I did wonder while I was there what it would be like to be there and enjoy the picnic without the weight of the world on my shoulders.
We do become so isolated and less alive, more like little mice trying to find the way through the maze. The goofy thing is, I should not have to re-invent the wheel, it’s not like this is the first time an abled person, who happens to own and want to keep her home, has become disabled. Bah!
I am so grateful to have just had one night of socializing and getting out, it was a beautiful day, really, you could not have asked for better weather. Not too hot or too cold. We were secluded away from the other areas where a lot of noise/people were.
I jokingly said I haven’t eaten like that in a long time, but it’s true, it is amazing what times of stress and fear will do to a person’s habits when help cannot be found.
Lovely time, nice to laugh with others and get back to one of my favorite childhood things: making others laugh. Nothing like connecting with your true spirit to energize!
Back to the Beginning: Holding On and Letting Go (posted July 24, 2009)
I’ve decided, and just sent an email to set up an appointment to have an eBay seller take possession of my entire Barbie collection and sell. Let ‘er rip! :-) The wild hair idea of me actually doing the selling is not going to happen.
So, I hope to schedule an appointment within the next week and get the process started. I gleefully decided if I have to do something difficult like this to wrap something good up in it too. So, each time I take some things to sell, I’ll spend some time in the town I love so much and get some much needed horse therapy!
I went through Mom’s old jewelry and am sending to a gal in New Jersey who makes jewelry out of broken tea cups and can use some vintage jewelry too. The box is going out in today’s mail, so that is one less thing to think about.
Here’s her website. I consider her one who makes beauty out of brokenness: http://www.marjoriescracked.com/
Here is here blog, she’s a very sweet lady! (Her blog has music playing so if you’re sensitive to music please make sure your speakers are off): http://marjoriescracked.blogspot.com/
The emotional side of letting go of other people’s stuff is one thing, it’s an entirely different thing to let go of my own things! It’s like selling of your estate while you’re still alive. Not easy, much grieving, and some relief along the way.
I’ve also let go of the notion of getting help or the small chance of saving my home. It’s a much freer place to be than living in fear, putting energy “out there” that “someone” will help me.
My friend who worked for Habitat for Humanity invited me to a book signing this afternoon of “Breakfast at Sally’s.” I’d never heard of the book before, but did a little research online and was impressed. Richard LeMieux was a very successful business man who spiraled down into homelessness and he wrote about it.
“Breakfast at Sally’s” is about all the people who helped him at the Salvation Army, and the dear souls he met along the way. He said it is his little dog, Willow, that kept him from committing suicide and I nodded! I so get that connection of animals to people, especially us shut-in sorts.
He’s a local author and it was neat to hear about something so near and dear, and close on the horizon for myself. Anyone and everyone is at risk of homelessness. They’re raising funds for a place in Bremerton for the homeless to get showers, their mail, basically all the things we take for granted…and, with dignity and respect too.
I appreciated his distinct lack of judgment when people asked him questions after his talk. This man lost everything and he was greatly changed, his heart is wide open now. Very inspiring, indeed. I would love to hear his book on audio since reading is such a chore and challenge.
Being on the verge of the same scenario am I, not probably looking at homelessness, but so close I can feel how bone chilling rock bottom is. I think I need to start going to Salvation Army, yup I do. They care for souls there and are unafraid. It’s something I’ve thought about for a long time but haven’t done for whatever reason. I have seen enough to be impressed by Salvation Army’s integrity.
It was heartwarming especially to hear about this man and his dog. SO many people have told me I should not have pets if I cannot afford them. I’ve always said I’ll give up my house before my pets. They’re my family, and I am quite sure they have pulled me back from the edge, for without them, I really doubt I’d find reason to face each day.
I love my animals and they’re staying with me is simply not negotiable if I have any say in the matter! I told each and everyone this is a forever home unless God Himself says otherwise. Animals were my refuge growing up just as they are now.
On a lighter side, I did get the front license plate off finally…via hacksaw! I don’t think I have to have a license plate on the front, just the back, but have it in my car, just in case. Last thing I need is a ticket to pay. The dang rust was on there for life.
In the housing arena I’ve called my lender, they’re sending me information on the HAMP program that the Consumer Credit Counselor told me about. My loan is eligible, so we’ll see. I’m giving myself time to rest before receiving another slew of paperwork to do.
I’ve decided to not to go to the Foreclosure Prevention Class tomorrow, which is at least and hour and a half to two hours round trip. Then the class would go from 10-6, heck, I was checking out this afternoon at the book signing!
I also gave some books to my counselor’s office, it felt good to know those books would go to benefit others rather than sit on my shelf or storage room. I think we all know I don’t read much! LOL!
It feels good to give, especially in this economy…and they say the poor give the most because we see the need. I can handle being poor financially, but not in spirit.
Tags: giving, Marjorie's Cracked Jewelry, selling possessions, TBI
Back to the Beginning: Paperwork and Beauty in Brokenness (posted Sunday July 26, 2009)
Oh it’s not that I think paperwork is such a fun and worthy topic of blogging, I just need to make a note so I can feel more accomplished!
I uploaded 5 of the 6 documents needed for Modest Needs’ site, and have one more coming from my ex-boss. Phew, lots of mental gymnastics for this injured brain!
I need to take a break and rest my tired brain and then get started on – yes, you guessed it, more paperwork! :-) I’ve got to get financial stuff to the hospital to verify need for hardship approval.
Then, if I can, and it’s not too hot up here, will need to continue to get filing and organizing done in preparation of the Wells Fargo documentation that is on its way.
OH – the gal I sent the jewelry and broken tea cup? She received the box already and is thrilled with everything, especially the tea cup because it’s Limoge! She offered to make me a pendant or earrings from it and I declined telling her I’m having to get rid of everything. How very sweet of her. She makes beautiful things out of brokenness.
She’s on Twitter, @marjoriecracked, if you’d like to see some of her work, you can go to her site at http://www.marjoriescracked.com/ (Love that site name!)
Back to the Beginning: Busy Weekend (posted July 27, 2009)
Okay, well, it was a busy weekend for me. LOL!
It’s been very hot here, so work comes in spurts with a lot of breaks. It’s about 65 degrees outside and it’s only 5:30 am. Unusually warm for us, the office up here got to 90 yesterday and the rest of the house was 80 despite all drapes drawn, fan blowing.
I’ve made some headway (love that word for Brain Injury!) with the mounds of paperwork that seem to multiply every time I turn away. Hard to believe I was once a file clerk in a corporate headquarters!
eBay sales have been dismal, at best. My like new Sony .mp3 player sold for a whopping $11.50, all accessories, battery, ten extra discs, software, manuals, etc. It’s almost like paying someone to take things from you!
craigslist isn’t going much better. Friday I gave the Brita countertop pitcher and 8 filters to Barb and Larry for their home. It’s nice to give back, even if just a little bit, these days. I’ve been in need for so long, it feels good to give.
I did make an appointment for an eBay seller to take a look at my Barbie collection, that will be Wednesday morning. So, at any rate, I feel I am making progress, step by step, getinng ready to move where ever.
Lack of short-term retention, poor reading comprehension, difficulty making sense of things, difficulty learning new things, it is a constant cycle. It’s just weird.
No, I didn’t use to be this way. I did have a memory of being in college after big layoffs in the mid 90′s. I was taking computer classes for Administrative Assistant degree and while the teacher was instructing the class I was looking ahead and doing the homework so I never had homework to do at night! Big change from that whiz kid.
I’m getting boxes of things together for people, the tea set to go to a lady at church, along with some beautiful tea books, some Christian artwork to go to Brother Frank.
I also have some things I’d like to donate to rehab, wondering if they’ll take the treadmill for someone who is re-learning how to walk, the exercise ball I have, and some of the fitness videos I’m either giving away or have copied…like Yoga. That’d be good for recovering folks.
I’ll need to have someone in-the-know to look at my meager coin collection, and jewelry. That’s the bummer about having all this stuff is finding out what it’s worth, it’s a lot of work, big research project.
Today I’m planning on staying primarily inside and getting as much done as I can. Still have paperwork to do, but at least with a start on the filing, it’s not such an overwhelming chore.
I’m finding the body pain is pretty much settling into my neck, left Achilles tendon, right knee. I can’t seem to walk right as to not cause pain to my Achilles or right knee. I’ve put a bandage around my knee to see if that doesn’t help me mentally check in and try to remember we all need to get to the same location at the same time!
I’m off to get breakfast for the animals and self, I’ve been waking up really, really early. Some days as early as 2am and unable to go back to sleep. Naps are imperative. I was thinking of trying to come up with some humorous t-shirts for Brain Injury, like, “Don’t come between me and my nap!”
Something funny, but not derogatory or mean.
Have a good day everyone, I think with all the fans blowing, windows open, etc., I may have gotten the heat down to 73 or 74! Whoa boy!
Back to the Beginning: Hot Day / Paperwork / My Dog Rudy / Animals (posted July 27, 2009)
Oh my gosh, it’s 90 degrees in this office so will get this done fast and retreat to the ‘cool’ main level of 84 degrees!
The paperwork is done for the hospital, rested in between each of my mental gymnastics task, yup, got very tired doing that.
I did spend a little time here on the computer copying and pasting emails again in a last stitch attempt to raise funds, and this time, saved them in a Word document! Did not get too far before my brain fried, progress, any progress is good.
Initially I couldn’t figure out why I couldn’t get out of bed this morning and well, all that copying and making sure I then copied the videos right exhaust my grey matter!
I’m with all the four-legged animals of the world, rest, drink a lot of water, stay in the shade. I am wondering about my dog, I’ve never walked with a dog through Cancer before, she’s slowed in her eating, of course it could be the heat, she is drinking a lot of water, but I’m on my Rudy watch trying to make sure she is as comfortable as can be.
She did eat breakfast and some frozen carrots this evening, but the dry food tonight, she’s not even considering. We’ll see. Even for her being 70 in dog years, she has far more energy than I do!
Animals are inherently good unless they’ve been wrecked by humans, and even so, most often can be rehabbed. Life is a mystery, animals have been my trusted companions. I wish I could say I’m as trusting of people. Working on that! Animals, children and some elderly folks are transparent. No wonder I am fascinated by them all.
Okay, I’m melting, so off the PC for now, ice water and come what may.
Tags: mTBI, my dog rudy, paperwork, PTSD, TBI
Back to the Beginning: Again, no help…wow… (posted July 30, 2009)
I finally got all my information to Modest Needs, oh the joy of paperwork with Brain Injury. Anywhoo, this is their reply:
7.23.09 – Thanks for applying to Modest Needs. Please note that we can only process your application with verification of your layoff within the past 90 days due to the current economic downturn. Best wishes to you!
7.30.09 - thanks for sending documents. Unfortunately, it appears that you will not be eligible for a Bridge Grant at this time. This grant is designed to support those who were recently laid off and made at least $250 more than their rent per month prior to their layoff. From your paystub, your average monthly income this year was $758 – which does not bring you to meet our self-sufficiency standard. However, it sounds like you are in the process of perhaps getting SSDI income benefits – so once you are within 30 days of receiving these benefits that bring your household income to at least $250 more than your rent, please re-apply at that time. Thanks so much!
I also, in a wild hair moment, contacted Nintendo to see if they would donate a Wii to our rehab because we do want to get better. Declined!
I have received the documentation for my lender, we’ll see how this goes. If I were in baseball, ha, I probably wouldn’t have a job because my batting average would suck considerably. Such is life. I have less than 30 days to get that documentation prepared and returned.
My dog just climbed the stairs to the office which is really cool of her, to still be able to do. I think the heat has zapped her energy and me giving her cool baths has helped a lot. I’m going to go give her another one right now.
I really don’t think anyone can possibly fathom the difficulty on this path, not just for me, but for very many. The closed doors, the betrayal of trusted friends, the ongoing loss, the rejection, the constant beating down of one’s spirit is hard to take. I am learning a lot about the unlovely side of human nature, but believe the only thing that will bring anyone back from the edge is unconditional love.
I’m still here, still fighting, still making waves, because that’s who I am! :-)
Bath time for Rudy, my favorite dog in the entire world! :-)
Tags: is there any help? mTBI, TBI
Back to the Beginning: House Paperwork and Living with TBI (posted Aug. 1, 2009)
I sent off the mortgage paperwork yesterday to my lender, via Priority mail with Delivery Confirmation, just in case!
I thought the paperwork really wasn’t very bad and then I realized this morning that’s totally due to being jacked up (unknowingly!) on caffeine! Drats! In an effort to stay hydrated, I was adding this lovely drink mix to water and chugging about 32 ounces each day.
I’d wondered this morning why my skin was breaking out and checked the label to see if there is sugar in it, there’s not, but there are a lot of vitamins – and caffeine. It doesn’t say how much, obviously enough to keep me up all night last night.
As of today, I now have more funds for food, so bought some groceries this morning. I look forward to getting to make more fresh juice as well as afford some luxury items like meat! I do wish Costco would take EBT, that would be wonderful.
It’s kind of a challenge having food allergies and going to the food bank, I’m allergic to wheat, so try my best to keep it out of my daily diet. Wheat is kind of a filler in our American diet, not much nutrition and my body just doesn’t like it much. I will have pizza once in a while, my favorite food!
I didn’t get a chance to take my Barbies in to the eBay seller last week, I did not feel well and the appointment fell on the hottest day, where it got up to 103 in SeaTac. Maybe dehydrated from what I thought was a good drink mix to help hydration but turned out to have a lot cafffeine!
I also consolidated a lot of donations for St. Vinnie’s. I figure I’ll call them and have them pick these things up since I still don’t have my truck running (dead battery).
Some of the material stuff is quite difficult to let go, part with, it feels like just one more loss in a string of what feels like millions on this path. The funny thing with this whole Brain Injury thing is once it’s gone, I may not remember it at all.
When I’m up to making fun of my own life, I joke about that with the house and question how much I’ll remember of it anyway! Us TBIers transition from long-range planning and such to living in the moment quite abruptly.
I’m thinking about going to Salvation Army for church tomorrow. It’s been years since I’ve gone to a church, and wonder, can I handle it? New environment, music, etc., I had to stop going because of migraines and isolation.
I’m kind of on a strange, eclectic spiritual path now, trying to find enduring truths, not just the things that sell a lot of books and then nothing in our lives changes. (Ha – except the writers get rich!)
I’m curious about underlying truths that all faiths have in common. I think this is probably a good sign, because it means I want to grow. I may not have energy for this right now, but it’s nice to be open, curious, after all that’s happened.
Sometimes I feel more like an alien than a part of this world, post-injury. It really is a different world.
But heck, just like getting the groceries this morning, everything I do in life is like a major covert military operation with all the planning and preparing I have to do! And even then, I forgot my coupons – LOL!
Tags: forgetfulness, making housing affordable, mistakes, paperwork, TBI
Back to the Beginning: Declined Representation (posted Aug. 2, 2009)
I got off the phone with the attorney I’d been seeking counsel from, he and their firm have declined representation. Three factors: low impact crash, economic (mileage to and from their offices) and apparently I took too long getting care.
He gave me a list of names of counsel in the area and suggested I contact them. All that work getting the documentation together, wow.
I don’t know where to go to get help anymore. The Social Worker at rehab said the best thing to do is go get an attorney, and I went for the best Brain Injury attorneys in the state. I have such a tremendously, tremendously difficult case to prove.
I am injured enough for my life to be completely blown apart, and this dang spiral seems to only go one way…down…despite my best efforts, prayers, tears, requests for help. Wow.
I will pick myself up again, but currently have a very weary, wobbly heart.
Tags: declined representation, mTBI, sad, strugling, TBI, wobbly heart
Back to the Beginning: Concerned for My Dog Rudy (posted Aug. 2, 2009)
Today was a migraine day, it’s still with me, but better.
I escaped later this afternoon to go to Costco, so I could eat something along the way, and get some more produce for myself and my dog as I see Rudy slip away.
I researched online to find out what the signs are when a dog is dying to help me prepare, or brace myself. Rudy is having more trouble getting up and is sleeping more, still her bubbly self at times. I’m glad the hot weather will be over after today and that will help.
I haven’t quite gotten my courage up yet to call the vet to ask him when the time will be, I have to be very balanced in this, not holding on a moment too long because I struggle to let go. But I honestly think humans and animals do hang on as long as they can because they don’t want to leave us.
I realized today what Pema Chodron says is so true, about going to the places that scare you, but I think this is a whole new level when you face the things your parents couldn’t face or help you with growing up. Rudy is the first dog I’ve owned as an adult, and she’ll be the first one I have to put down, and by myself.
I expect it to be as difficult as the initial diagnosis of Cancer was, trying to find the right thing to do for her, with what I could afford at the time.
If all dogs do go to heaven, she will have plenty of people waiting for her.
Animals have the noblest hearts.
Here’s to both a known and unknown future…
Tags: aggressive canine cancer, cancer, facing fear, go to the places that scare you, my dog rudy, TBI
Back to the Beginning: Rudy (posted Aug. 3, 2009)
The list of things to do today is being put on hold; I didn’t expect the day to unfold as it did, much of the day sobbing. No, I don’t have it all together, here folks.
This morning I made juice for myself and Rudy, and much to my surprise, Rudy drank it all! Then she had energy to play and play and play, rest, rest, rest. I took Rudy with me to pick up my meds and she was all excited about the ride! These are positive signs, I believe, but the reality is inescapable.
I can’t eat, I have tried to lie down to rest, but keep crying. Rudy has been on her bed most of the afternoon, when I check on her, she might wag her tail, but for the most part has that ‘faraway’, not blinking look. She might stretch or whatever, but not move a lot.
And for all of my best intentions trying to not cry in front of my animals, I had to give that up because it became more of a full-time, uncontrollable thing! It is so hard, this process of letting go, watching one fade. This human doesn’t do good-byes very well.
I took half a sleeping pill to try to get some rest during my normal nap time, but have not been able to sleep yet. I am watching Rudy for signs of pain or discomfort and haven’t seen any, but she’s also not getting up as much as she did before. She used to be my shadow. My calling her an “obnoxious doggage” is her usual lab behavior, that’s how I know she’s okay.
I just struggle to no end taking the trip that for her only goes one way and I return home to the empty house and empty leash. They say it’s the most humane thing to do for an animal yet we don’t put people to sleep, so is it really humane? They love us with every ounce in their beings, we must honor them all the same, be good stewards of these precious little lives.
Just a lot of concern about Rudy, and the house, and what lies ahead. My super-sized, jumbo, gigantic, mondo size cup of courage is empty today. Doing all this alone sucks sometimes much more than others.
Tags: Cancer, dog, Rudy, TBI
Back to the Beginning: Progress (posted Aug. 3, 2009)
I took a couple PM pain meds last night to help me get through the lingering migraine and help call it a day too. What does a person do when they’ve reached their utmost limits? It’s a pretty sad day when a Brain Injury attorney turns you down!
This morning, although groggy, got myself out of bed to feed the animals, I think it’s a good sign Rudy is still eating. The juicing has helped a lot, you’d be hard pressed to believe she is the same dog! She’s much more animated, alert, playful, curious, and yes, obnoxious! I figure these to be positive signs and will of course continue to keep close watch.
Today was my day for making phone calls although I really didn’t feel up to it and with foggy brain stumbled around before I really got out what I wanted to say. Too much of life is in limbo, and since I see the Maple leaves already turning yellow, feel must rush to get things lined up for either a move or come what may.
I called Unemployment and after thirty minutes on hold spoke to a real person. She said my claim is being looked at and that there was a note at the bottom of my file that didn’t make sense. I asked what it said, if she say, and she said she didn’t want to frighten me (I’m trying to think if that’s the word…), she said she would go find out.
While I’m on hold I’m thinking to myself that nothing really frightens me these days. Really, the news on this path is most often negative and it is daunting to take. Sad thing is it’s not only happening to me, but this is the path of all disabled folks I’ve ever come in contact with.
She said for me to continue filing my claims each week and within a week or two there should be a decision. Hopefully I qualify for emergency unemployment compensation, if I do, that may just help me bridge the gap between living off of savings and staying here until Spring.
I took a little break and worked outside on the brick/rock walkway I’m trying to put together. It’s been quite a while since I’ve asked for help and since it’s still undone feel it’s up to me to do. Rudy was outside with me and she played like crazy! She’s such a funny dog. I am so glad she is feeling better.
Back to the phone indoors I called a gal the Social Worker at rehab left a message for me to call. She’s also a Brain Injury warrior and has horses. We spoke for quite a while and then decided email or Instant Message would be better.
I told her I haven’t IM’ed in years, so would have to install software to do so, but I’d give it a try again. IM usually goes too fast for my brain to follow. For all the work I’ve done to rehab my brain I can’t seem to speed up the processing. Hopefully we’ll be able to keep in touch, we seem similar in our work ethics and not looking for handouts, but a way through.
Gosh, she talked about how we have a lot of material stuff to get rid of and I told her I’ve only recently decided to find an eBay seller because my good intentions are getting me no where fast. She said that’d be a great job for someone, I agree, but probably not someone with Head Injury because it is labor intensive.
We talked about how we fall through the cracks, how often we don’t have cases in which to get advocacy and help, and I said it can feel like we’re the most despised people on earth, but we’re not, the system is what the system is.
The funny thing is, if we could do better, we would. No one would choose this path! I guess it’s easier to judge than it is to understand, and judging means no one has to change.
Oh – almost forgot, rehab called; there is an opening for Occupational Therapy tomorrow. I was stunned and asked the receptionist if she was joking…wow, I didn’t mean that! I’m scheduled to finally get in after how many months? Yeah! Speech Therapy is scheduled for Thursday morning, so this is positive progress.
I plan on working on the walkway again this afternoon although it really aggravates my neck, it’s got to get done. Maybe Ibuprofin will help my head and neck…off to ice and rest for now.
Blessings on ya!
Back to the Beginning: Called Vet (posted Aug. 4, 2009)
I’m a big marshmallow when it comes to my pets so decided to call the vet and see if they could help me with signs to look for.
I was so emotional I didn’t even let the receptionist say the clinic name or her name before I jumped right in and asked if there are signs I should be looking for in Rudy.
She said age is something to consider, and its different for every dog, they just put down an 18 year old Jack Russell Terrier that was the oldest she’d ever seen.
Basically if she stops eating, starts acting senile, loses bladder or bowel control, stares at walls or at shadows, has just been outside and wants to go outside again (has forgotten they’ve been out), these are all signs.
She said with Cancer dogs, especially, they’ll stop acting like themselves. Some go quickly, some will stop eating, drinking, playing.
She was very sweet sharing all she did for she has owned a lot of animals and has worked with different vets over the years. She said if I’m still concerned, give them a call, the vet always gives an honest “this is what I would do if it were my dog” opinion. I told her I have really appreciated that, she agreed, saying she’s worked with a lot of vets and he’s the only one that does that.
The vet also won’t mince words if it’s Rudy’s time to go. I asked if they allowed people in there during the process but she said with all her experience putting down her own pets and other people’s pets, she wished she’d never seen hers put down. It is quick, it’s basically an overdose of anesthetic, but they can lose control of bowels, vomit, it’s not pretty. There is no pain, they don’t feel anything.
So I have a pit in my stomach. Tomorrow I have a day full of appointments and cannot take her in then, maybe Thursday or better yet, Friday afternoon so I can have the weekend to mourn…if this is indeed the end.
I don’t know, I do know I hate this part of animal ownership, I so wish they could die peacefully in their sleep (the vet tech agreed), but said this is the most humane thing (and the most difficult thing). If it’s her time when we come in, the Dr. will tell me that, if we can make her more comfortable in the meanwhile, we can do that.
She’s 10 years old, had Cancer surgery two years ago and still has quite a few lumps and bumps. She is slowing down, she’s still playing and eating, but she’s slower. Oh boy, have to do the right thing…
Trying to remember to breathe in deeply, breathe out deeply. It’s simple, I don’t want her to go, ever, and I’m not even a dog person! She needed a stable home and people that would work with her, and I needed the lessons only she could teach me.
I promised her the day we got her at the pound, if I have any control over it, she’d never go back there, she’d already been there twice and when we went to see her, she was the only dog that did not bark. When I put my hand in her cage to pet her, she kept her head there after I left.
Tough times require courageous love to do what is right for her…no matter how much it hurts.
I did have to put my cat down two years ago, but that was a much more instantaneous moment, took her to the vet, was supposed to pick her up, they called and said she collapsed. When I got there she was in that not blinking stage and meowing. I couldn’t bear to watch them put her down although I really wanted to be there for her.
I had to write this all out now, before tomorrow’s full day, or with how heavy this is on my heart, would forget details. It is difficult to live in the moment when there is so much pain yet to occur, it’s almost excruciating.
As far as I can tell, she is not in pain, but she’s always been such a happy dog, maybe she’s doing that to help me…I don’t know…life, and it’s mysteries…
Back to the Beginning: Safe at Home for Now (posted Aug. 14, 2009
Life has been passing by at breakneck speed and I’m peddling fast to catch up.
Last weekend I had a friend of mine from Montana pick up my Mom’s big old Hobart mixer, I gave it to him because he used to appreciate and admire it. Although he came to get the mixer, he was
concerned because what I'd said in my email about having to liquidate my assets.
This is the same man who years ago saved me from being separated after I was tossed out of our white water raft.
We have remained friends, sometimes as distant as acquaintances, never really close since we were engaged years ago. He is one of those unusual people who sees other people’s needs and does something about it.
During his visit this time was the first moment I had feelings for him. He is a good man, I feel safe in his presence, and I always felt protected. Rare things for a gal with my history.
He is offering to help me, no strings attached. He did tell me at one point he checked in to seeing if we got married if his benefits would extend to me. There’s too much of an age difference for that, but his even having that thought in his mind was huge.
My head is spinning trying to recall details because a lot has been going on. When he shared about the “m” word, I had already been thinking of asking him to think about if he could see us as more than friends.
He said yes. He never dated after we were engaged, I went on to date, get engaged, but never married.
We talked, we cried, we laughed, we spoke of things we’d never spoken before, life has softened us both. There is talk of me potentially relocating to Montana, to the wide open spaces my heart craves, and property for animals, seclusion, quiet.
He will be helping financially as he can month-to-month which takes a huge amount of pressure off me and I finally feel like I can breathe again. I felt I was suffocating for so long.
Last night at support group the topic was Suicide. I had no idea I was at such high risk when we were told the triggers or things to look for. Although I was taking notes, I did see the Occupational Therapist glance at me when she said something to the effect of your body will shut down if you try to maintain an unhealthy level of stress.
I think I’m supposed to be here. It was one of those divine moments where everything seemed to resonate with where I’ve been and what I’m feeling. My faith has kept me from doing any harm to myself, but boy, have I thought about it. Those dark places are a natural part of this difficult process, too much bad news over too much time will degrade one’s spirit and health.
So for now, my intention remains the same, to stay here until Spring and then sell the house if the market bears it. There’s none of the typical relationship pressure or stress here, so we’re taking it incrementally. I am carrying the intention in my heart what I do is because I love him and I need to be consistent.
He respects my space, my person, my independence, my survival skills, and maybe most importantly, my connection with animals. We share a lot of perspectives, have both worked and lived together.
Our work ethics match.
He was recently in the newspaper for the work he does giving. He inspires me. He has that same thoughtfulness and concern for everyone, I am blessed beyond all measure to be included in his inner circle. Trust, relationships, having someone to care about and care for me are big things.
Love in the beginning, love in the middle, love in the end.
It was a good visit, it is humbling to be in the presence of someone stronger than me.
I told him I’m not a damsel in distress, but the truth remains, his help is saving me once more from the brink of the unknown.
Hugging him I was reminded it’s okay to be happy. I want to be in the presence of people who are good for me, who make me want to do the right thing, be a better person. I feel that here, and that everything is going to be okay. In all my years since I first met him, he is the only man I knew I could trust.
I hope to continue to sell things, declutter, give things away, prepare the house as intended. I am also hoping this respite will grant me the ability to help other TBIers before I leave. Seems we’re all running into the thing of having too much stuff and not enough money.
Starting with the next support group we’ll be having a social gathering afterwards which sounds wonderful to me. I’ve been in such need the last several years, it will be a blessing to be able to give.
One of the Masons who (via my friend Kathleen), will help with the house stopped by this week to do a walk through. He hopes to have a group together in the next week or so.
What a blessing. I am glad I’ve asked for help, despite my typical ‘go-getter, independent woman’ mindset, sometimes we all just need a little help along the way and there’s nothing wrong with that.
And, when the house sells, I can pay Richard back for the money he loaned me. There is a greater indebtedness I cannot repay of someone coming in and helping at a time I was at my wit’s end. He said it means a lot to him to see me go from the verge of crying to laughing.
I am grateful for the rest from this heart storm which made me dreadfully weary and heart sore…and to be able to focus more on the greater good.
Thank you for your prayers and support. I am in awe, humbled and grateful.
Tags: concussion, disability, distress, finances, head injury, hope, housing, mTBI, poverty, rest from the storm, solution, TBI
Back to the Beginning: Progress (posted Aug. 15, 2009)
I’m kind of offline working on things around the house right now, St. Vincent de Paul will be picking up an ever growing pile of donations on Monday.
Still reeling from good news, yes, us Brain Injured folks, well, everything costs us, good news and bad. I am grateful for the good news, however, and thanking God. Now I just wish to be able to turn and help others on this same path as well as take utmost care of myself.
I went to the Farmer’s Market today, I woke up around 3am and couldn’t sleep so got up and worked on an eBay auction. Since I was up so early, I got to the Market at 9:00 which was awesome because it wasn’t busy – and – no loud music playing!
Looking forward to juicing tomorrow, can’t get much fresher than local, what a difference in taste.
I’m giving away a TV stand that was given to me, I’ve tried repeatedly to sell it on craigslist and have someone who expressed interest from the local freecycle group where I posted it. Will be glad to get that out of the hallway.
Glad to have a bit more energy yet I tire so very easily and my injured brain is quite high maintenance.
It is a daunting project, really, selling on eBay, giving things away. Like the Occupational Therapist said, if I can tell myself this is temporary and can do it for maybe six months I can do it. She reminded me last week this stress is not something I can sustain. And, as I know from experience, the less I own, the less I maintain.
Oh – and a bit more good news, I received my Unemployment compensation for the several weeks I’ve been filing for since I lost my job in June. What a relief. Oh my gosh. I told the Occupational Therapist I’m having a heck of a time living my life focusing on money and she said she can understand that, but again, try to remember it’s temporary.
Another project I want to get back to is scanning and saving photos to CD. Much to do, but on the one hand, with my family being as detached as it is, and always has been, I’m feeling freer to let go of what I term “The Mighty O.”
I worshipped the family “Obligation” all my life and took care of my family after Mom passed away.
I do love them, but only in a healthy, balanced way now. Sometimes being made to let go of that which drains us is a good thing…because it was never good for us in the first place.
I packaged up a HUGE 26 pound box of old family photos and sent it off to my Brother and Sister-in-Law in Arkansas. They’re the only ones if the family who have stable housing, I don’t know where I’ll be ending up so have to get rid of as much as I can.
Life and perspective, growth and learning, I am grateful.
Tags: brain budget, moving, packing, Preparing to sell house, TBI
Back to the Beginning: Busy Day (posted Aug. 16, 2009)
Today turned into a much busier day than I anticipated, having two folks here pick things up today takes a good chunk of time to get things ready and wait for them to show.
St. Vinnie’s will be here tomorrow to pick up what started out as three bags and three small boxes and continues to multiply! They do good work, so donating to them is neat, to be able to give back.
Tried to work a bit on the backyard walkway until my neck hurt too much. I figured out how to level the back row of the bricks so I think that will help me have a kind of template to go by. Finally! That which takes an average person a couple weeks or maybe even a weekend takes me all summer.
I gave away the TV stand that was given to me, so it’s nice to have that empty floor space. I certainly do like uncluttered space post-injury. Sure has changed how I decorate my house (or not!)
I returned the beautiful floor tile to Costco last week although I did not have the receipt and I guess I bought them way back in May of ’07, they still refunded me the money which was very nice. Too expensive to install and tile takes too much time for me only having one bath, I’d have to do something extravagant like take a vacation at the same time the bath is under construction for the full three days.
The eBay auctions seem to be going well, and without an insertion fee for the first five listings, I’m going to try to list five each month as well as work on other things around the house as I can.
There is a licensed, bonded estate appraiser I may just get in touch with, she’s in the next county over, but if she’s good, it will be worth it.
Richard made it back home safely to Montana last night. I guess the big old Hobart mixer toppled over onto the Starbucks coffee brewer I gave him. Oh well, stuff happens. I still have two more here to try to sell, probably on craigslist since they’re so bulky.
I rested a lot today; once I laid down I didn’t really wish to get back up again. Tired, and tomorrow morning, early is rehab and errands.
The weather is getting warm again so may be limited here on the computer as it does get rather toasty in here!
Richard just sent me a listing for a fixer home on 20 acres backing up to the National Forest for less than $115,000 which is what I paid for this house. Wow. Wide open spaces, the place my heart has always been.
I’m noticing again I do better when I do not work, now, if only SSDI could see that too. I’m not lazy, I work harder than I probably should just to survive. Oh my gosh, to get to live again, just live…
Tags: decluttering, eBay, letting go, moving, selling, TBI
Back to the Beginning: Teaching the Teacher (posted Aug. 18, 2009)
Yesterday I took a box of files outside to enjoy the nice weather while I do something I think I’ve come to realize I really hate…filing. I think I hate it because I toss it all in a box for ‘later’. Not having much of a concept of time, years can go by with my looking at that box (or boxes) with a fearful glance!
I unearthed some things I wish to forget (the terrible outcome from the auto accident lawsuits and that whole mess of paperwork), and then I stumbled upon a Multicultural Education Lesson Plan I completed way back in 1990.
I kept it because I got a great score on it, and the instructor wrote a note at the bottom, “beautiful lesson. May I make a copy to use as sample?”
Teachers, our best underpaid resources in America. I once wanted to teach, I loved it. I did not go into teaching professionally, but would volunteer to get my ‘fill’ at church and volunteer opportunities.
Thumbing through the lesson plan I was stopped in my tracks. The title? “The Elderly: Bridging the Generation Gap.” Ironic or not, my elderly Dad called and let me know he fell again, this time injuring his back.
Talking with him I apologized for not calling as I had gotten into habit of doing because I forgot. My forgetting is really not okay to him or his wife, welcome to the land of double standards.
I forgot, I had migraines and perhaps in all honesty didn’t wish to call. Maybe I was just looking for excuses, the very thing he used to do and drove me crazy.
Seeing as I had written this lesson plan I was now thumbing through, the irony of timing did not escape me, nor did conviction…
You see, my lesson plan has an imagination activity game where students would try to imagine what it’s like to be an elderly person, with these questions:
1. If my body was not functioning the way I wanted it to, I would feel…
2. If nobody from my family ever visited me, I would feel…
3. If people kept telling me I was in my “golden” years, I would feel…
4. If all my friends and my spouse had died, I would feel…
5. If I were really unsure as to where my money would come from, I would feel…
6. If every day I was reminded by my body that I am going to die soon, I would feel…
7. If I started forgetting things so much that I thought I was going crazy, I would feel…
8. If everything around me was changing so fast that I knew I could never keep up, I would feel…
9. If I went into a store, and young kids laughed at me because of my looks, I would feel…
10. If no one ever called me on the phone, I would feel…
Needless to say, with my definite set of limitations these questions can also easily be posed to and felt by me.
Sometimes teachers are easy to teach, sometimes they’re difficult because they/we believe they/we have all the answers. I don’t.
There are times in our lives when we just have to get over ourselves and do the right thing. When I was sixteen my Mom died suddenly, and I learned the hard way to say the things you need to say because there is no guarantee of tomorrow or even the next moment.
And, as I’m learning from Pema Chodron to live mindfully without regrets, courageously and compassionately, I’ve made a note to call my Dad each week. It doesn’t matter we have the same conversation or it’s a surprise for us to actually talk for more than several minutes about only surface issues.
This isn’t about me, it’s about what he needs and I can do this for him. I believe we are to honor our parents to the best of our abilities…that does not eliminate mistakes or abuse. I just have to live with a clear conscience, do the right thing in my heart, and live with as few regrets as possible.
Life is about choices. We can choose, as Pema teaches, to either have things that hurt us shut us down or open up our hearts wider, to deeper compassion, no matter what. I’ll take the latter. The former just hasn’t worked for me.
Tags: compassion, forgiving, growing, learning, letting go, life lessons, pema chodron, TBI, teaching
Back to the Beginning: Another Busy Week (posted Aug. 20, 2009)
I’ve wanted to update my blog but have needed some time for things to settle a bit first. I must say having a love interest is adding a lot of good energy to my life, even with him in Montana, I still feel close.
I had been looking forward to my appointment with the Occupational Therapist on Monday, in hopes of sharing the news with her, but she was out sick, so will have to wait a week. I’m quite sure the changes to my insides show on the outside.
I did donate a few more videos to the TBI library, my old Patch Adams VHS, and a couple of new exercise videos.
With Speech Therapy I learned, not to my surprise, but my processing speed is slow, my visual scanning needs work, and well, I had a nice chat with the Speech Therapist. We talked about what a crazy world we live in, we can pay sports stars billions of dollars but we can’t keep our parents and children in their homes. America is out of balance, it’s no surprise, we’ve become terribly greedy, unkind, selfish, and ungrateful.
My homework is to find a planner that will work for me and I think going back to what I’ve used in years past will work. The Speech Therapist said they have funds so they can help with that, I’m so glad, some of those planners are expensive. I opted for one that is probably under $20. I think in all reality, it’d be best if I could get back into using my PDA since it holds so much information, but we’ll see. Seems like every head injury changes everything and it takes quite some time to put all the pieces back together again, minus a few!
Tuesday was my appointment with the Neurologist, and I blurted out how I’m high maintenance now, that I can’t quite seem to get back to where I was from even before this accident. He said there are three things that we know help: counseling, medication, and exercise.
I’m doing therapy at rehab, and what he suggested next blew my hair back. Neuro Psych Evaluation. That made my heart race, it’s a brutal test, and not for the faint of heart because it will show areas of weakness.
I asked if this would help with the whole Disability process as I’m “circling the drain” as some call it. He said definitely because it quantifies things instead of just patient complaints.
I shared how frustrating this whole process is, because those who ‘get’ Brain Injury can see what I’m struggling with, but to everyone else, I look and sound fine. I joked about the stipulation of being ‘high functioning.’ We all work so hard just to maintain our lives, and keep from drowning, but to outsiders, we’re lazy, unmotivated or whatever.
If only they KNEW! For them to know they would have to let themselves see, and I think that is difficult. I think we live in a world where we believe people relieve the suffering of others, not cause it. Honest introspection is necessary. On the other hand, I do believe people would want to help more if they knew what they could do to help. I still have to believe in the basic human goodness in order to keep some sanity!
I also mailed my documentation proving my income for the year I bought the house. I opened up my mailbox and there was a package from my lender. I thought maybe they didn’t need that documentation after all. Hilarious! It was the same initial paperwork I’d already sent to them. No wonder us head injured folks get caught in this endless Catch-22. I just now have enough awareness to know I filled out that paperwork before, and actually kept a copy of it.
And, I discovered why I hate filing so much! The Speech Therapist talked about all the paperwork one accumulates with any sort of illness, it’s daunting, sometimes you get several copies of the same thing and at a time you need to be taking care of yourself, you’re at your worst, you’re getting buried in bureaucracy.
I agree with what the Speech Therapist said, all that paperwork is a reminder of your illness of injury when you’re trying so hard just to survive.
I’m playing telephone tag with the Neuro Psych Dr’s office, taking deep breaths, planning for this next part. So much of this journey I wanted to have behind me, and like the Speech Therapist said, not have it be a daily reminder I’m injured.
But after three accidents I didn’t cause, I know I’m supposed to be here, clearly! Growing and learning in my spiritual life is what matters most, I really shouldn’t care the form it takes. I’m not being punished, this is real life.
Today I was able to get groceries for the first time with the increased amount, and I am happy to say, I’ve stocked up and have only used half my allotment. Maybe it’s because my Dad was from the Depression era, or survived WWII, but to me, there’s a great comfort having enough food in the cupboards!
And I’ll be able to still afford some wheat-free bread I can freeze too. Sometimes it’s all about the simple things in life!
Tags: coping, disability, occupational therapy, rehab, Speech Therapy
Back to the Beginning: Delighted and Growing (posted Aug. 23, 2009)
I’m still busy doing everything I was doing before, but with such a lightness and joy in my heart, it is a staggering opposite of where life has led me for so long. What a difference help and hope make.
Richard is excited about us, telling people who knew us before we’re getting married, the potential move to Montana is a go, and that we had a really long, over 15-year engagement! Everyone he is tilling are busting at the seams wishing him, and us, all the best. He is working diligently to make sure the transition/move in the Spring is a smooth and happy one. How blessed am I!?
I wish I had the same sort of support system to share my news with, I am not close with friends here, and in a way, that makes leaving easier. I spoke with my Dad today and didn’t tell him, wanted to although I did, I’ve always felt like conversing with him is the Grand Inquisition. I’ve known that since I was a teen.
I’m learning a lot about my family in this process, the good, the bad, the ugly. I’m currently scanning and saving my Mom’s recipes to my computer, just the ones I think I’ll use or remember from childhood.
The originals will go to my youngest brother and the copies I’ve been scanning will find a new use being recycled some where in the world. My family already has notebooks of Mom’s recipes I gave them at Christmas years ago. I’d like to say if I need any of those recipes I’m not choosing to keep, I’ll have back up with my family, but my family isn’t available.
Sometimes the difficult truths about my family makes it all the more difficult to strive for something different, to not lose heart, and keep trying for better relationships. I can see why I do well with animals, because what you see is what you get, no confusing talk to disguise a walk that is polar opposite!
Going through my Barbies I’ve recalled I never really played with them except for when friends came over. My favorite? Still in tattered box and I’ll probably end up keeping is General Custer! Silly girl. Guess I never was one for dolls and dresses and all those things my parents intended me to be.
Faith Hill’s song keeps running through my head:
“She was daddy’s little girl
Momma’s little angel
Teacher’s pet, pageant queen
She said ‘All my life I’ve been pleasin’ everyone but me,
Waking up in someone else’s dream.’”
I am glad Richard is delighted, and I am thrilled too. Oh my gosh! I am glad he is not like my family, able to allow me to be who I am, warts and all, and still loves me. I don’t expect life to be a bed of roses, but as long as we keep talking and work together, not against each other, it looks like the rest of our lives will be far better than the start!
Tags: changing, growing, move, TBI | Leave a comment | Edit
Back to the Beginning: The Dark Place (posted Apr. 26, 2009)
I appreciate ABC’s Grey’s Anatomy for a lot of reasons. The character development and some of the realness of the characters fascinate me.
There was one episode where either Christina or Meredith asked the other if they were in that dark place. Wow. An acknowledgement of that dark place we all experience. Rather than denying or glossing it over, or telling the other to not feel that way, they handled it together with understanding.
Not surprisingly after a trip to Costco and WalMart yesterday, my attempts at getting and staying out of bed today fell short. I felt glued to the mattress, having no choice but obey my fatigue.
A lot of times I try to push through knowing if I wait to feel better, things may not get done at all! The trip to Costco and WalMart have been on hold for that very reason for a long time, well, and coupons do have expiration dates!
Something most folks outside of Brain Injury don’t know, most of us don’t feel good, ever, in addition to our other struggles and deficits.
Last week I pushed myself hard to get the letters out and try to help myself from losing this home. The end result was accomplished, but the price was extremely costly.
By the end of the week I was highly irritable, apathetic, amazingly pissed off, tired of the struggle, with suicidal thoughts. Life with brain injury is anything but glamorous, but it is real life. I Googled suicide, not like I needed any ideas.
I like myself least when I am out of sorts like this, feeling out of control, the emotional pain suffocates, I want out. The years of struggle and trying to get help, the very denial of this Brain Injury, loss of friends, job, understanding, let alone my own mistrust of myself and loss of knowing myself, are daunting.
I’ve been at this place for several years, not knowing if I’ll get to keep the house or not, and it’s really hard to build a life on uncertainty. Will I get to stay, can I fix things, or start packing? I worked so hard to get better so I could return to work full-time, but that’s not reality.
This is why I fight so hard to have a good life, to manage my pain, and to keep myself from staying in that dark place. There is such a struggle to keep one’s head above financial water, but the fight to keep from losing one’s spirit as well.
It is incredibly disheartening to go for help and be turned away.
It is terribly frightening and depressing to go to Disability, file and be turned down – only to hear from everyone they turn people down three times on average! This is the system I’ve paid into for over twenty years and on the back of their envelope telling me my appeal was denied is printed in caps, “For the times that count – count on Social Security!”
Are you kidding me?!
It is a daily challenge to keep myself above water, financially, spiritually, physically, emotionally. I think I understand why people give up because they’re told in a myriad of ways they’re not worth it…but that isn’t the truth.
Getting help in this world takes a lot of game playing, cheating, changing who I am, or having a story to get a lot of attention so as to change things. I think we who go through the system see it in its lackluster glory and blaring hypocrisy despite the printing on the envelope.
The truth can be tremendously ugly, I’m not playing games here, this is my life.
I am still striving to live well despite everything and to live within my integrity and conscience. I know if I change myself to fit into some bizarre category for gaining disability benefits or help, that the next person following in my footsteps has to do the same. That is wrong.
Disability with dignity is not asking too much, for myself or anyone else.
I accept the dark places in my soul, without denying, glossing over, or berating myself for feeling it. It will be handled, together, with help and honor.
It is part of this path, and it is part of who I am, and it too has value for what it has to teach.
Tags: clinical depression, depression, dignity, living with traumatic brain injury, PTSD, Realities of living with TBI, suicide
Back to the Beginning: The Feeling of Home and Update on Rudy Dog (posted Aug. 30, 2009)
For those of us who grew up in pretty chaotic homes, finding home is quite a journey. For many years I hid in my bedroom out of the line fire, safe only in the presence of animals in whom I could find compassion, consistency, and comfort.
Animals have always been instant calm, they keep me grounded, sensing, seeing, feeling.
I am currently in Montana, Richard came and picked me up at my home, drove me and my dog Rudy back here so I could get a sense of the area before the move, since I’ve never been here, it is a good idea! :) It’s beautiful.
On the drive over as soon as we hit the foothills of the Cascade Mountain Range, I felt the burden I’d been carrying these last seven years lift. I am an outdoors, nature loving gal and I haven’t been to the places my heart loves dearly and in a way, that can be like a death in itself. I think our hearts and spirits have a language all their own, not confined to the limits of communication and words.
The people here are kind and cooperative, generous and helpful. People help each other out here and are concerned for their neighbors. I feel at home here, able to just be myself and that is enough.
I’ve loved horses all my life, so being in an area of acreage, horses, horse tack and even western clothing thrills my heart to no end. My expression, my entire countenance has changed since having Richard in my life again, here where my heart is not fenced in.
Richard and I continue to talk and it is wonderful, we’re deeply committed to doing things that foster a close-knit relationship and maintain it long-term although neither of us had 3-D models to learn from. Learning from Pema Chodron, I believe if we can get to the heart of our genuine sadness we can do great healing, and not cause harm in the first place.
I have missed being a part of Richard’s life, his energy, his relating to and caring for people. He inspires me. He makes me want to do better, be happier, kinder.
My heart knows a peace, safety, security and freedom it has only known when I’ve been ‘safe’ alone, usually in nature or with animals, and unguarded. This is new territory to feel this way around a person.
I will return home with Richard’s Grandmother’s ring (if we can find it!), it is still sized for my hand and Richard said he was hoping over the years he would not have to get it resized! (Yes, he held hope out for 15+ years we’d be back together some day.) Spring will be the preparation and Lord willing, sale of my house and a move to beautiful Northwestern Montana and a different sort of healing for Richard and I, and my injured brain.
I am at peace, grateful and content. At the age of 42 I think I may finally have found home and a place of belonging.
There are lots of volunteering opportunities should I be able to get on Disability, there is a lot of need out here, but I like the fact most everyone seems to be on the same level. Not so much ego, pride and division as in the cities and suburbs. No matter what, I would still like to be involved and able to make a difference in the lives of others.
Next week is the Neuro Psych test and a return to the life I’ve known for so long, but am grateful for something to look forward to on the horizon and a great friend to share it all with.
We had our first rough day with Rudy since arriving last week and we thought we were going to lose her last night. I’ve been to this place with her, crying, telling her it’s okay to do what she needs to do for herself, she can rest or leave. She drank a lot of water and her eyes are brighter.
She had been struggling with what looked like convulsions in her tummy. Richard and I laid down on the floor with her, cried for some time, he then fed her turkey which was a great sign she hasn’t reached the point of not wanting to eat.
This morning she was up again drinking a lot of water and acting more spunky. Her tail is a little limp, I’ve never seen it like that. We’re taking it step by step, may return home earlier than planned depending on how she is doing to get her to the vet if needed. Rudy is not in pain for which I am grateful.
Tags: healing, hope, love, progress, rudy dog, TBI
Back to the Beginning: Neuro Psych (posted Sept. 3, 2009)
Today was the Neuro Psych exam, Richard and I returned here Tuesday evening after a very, very long day of driving and rest stops.
The test went well, I left the house at 8:30 this morning with map printed in hand (yes, I’ve been there several times before but can’t recall which street it’s on) and needed to be on time or as close as I possibly could be. I finished up before or around 3:00 pm and then rested in my car until safe.
I did not recall any of the testing, but later remembered some of the things we had done before. It is what Brain Injured folks call “brutal.” I am glad it’s over.
I forgot my coat, something to eat, and even to bring water, but I got to the appointment and I’ll take that as success! I forgot other things today, trivial things that really don’t matter in the big picture of life, but do keep me off balance, feeling quite adrift and lost moment-to-moment. Being sure of myself is one thing I miss a lot.
I managed to fall twice while at Richard’s apparently I really can do only one thing at a time, walking downstairs and talking is hazardous! I only fell a couple of steps and made a joke out of it, but it did manage some soreness as well as bent back my big toe nail on the right foot.
I also fell taking my dog Rudy out to go potty, I didn’t see the hole in the ground, again my right foot took the brunt and I fell on my previously injured sitting bones. Some injuries are more difficult than others to heal.
I am significantly tired and am trying to stay focused on all that has to yet be done. I am wearing Richard’s Grandmother’s ring, I am thrilled. Richard was in the shower at the time and let me give his office another look through. An act of trust on his part, and honestly, quite uncomfortable to me. I asked God where they were and going through things I almost didn’t even check the plastic bag the rings had been in. Yes, we have rings for both of us, and yes, we’re both wearing them.
We are committed to each other in word and in deed and it is refreshing not to mention petrifying! I continue to do the things I need to to get the house prepared, but with a greater sense of purpose and meaning. To have someone I can trust and be fully myself with is a gift and something to be a good steward of.
Before I left Richard staked out the foot print for the barn where my horse will be. I’ll be able to look out the window and know every day she’s okay. My life has been in such turmoil these last several years, the thought of hope for the future is definitely a warm fuzzy!
Tags: home, Neuro Psych test, TBI
Back to the Beginning: Betrayed (posted Nov. 3, 2009)
I’ve been missing writing lately, with so much going on, I’ve been longing for time and energy to sit and catch up…but more than anything the safety to do so.
I won’t mince words. I miss being able to come here and ventilate my heart and thoughts, but honestly having a friend betray my trust still stings. Oh yes, people betray people all the time, it’s just not the same when your world becomes tremendously small and you’ve lost almost everything along the way. These are tough life lessons to live and learn from…and above all, still choose to nurture an open heart.
I have a choice. Can the actions of one person or others change who I am or what I need? No.
For those of us who have not known a lot of safety, everything is a step of faith, trial and error, trying and falling, but always getting back up.
I think as humans we’re all longing for our own personal freedom, to fully be who we are, without the fussing and fighting. There is nothing I miss more on this path than my freedom, to be able to go and do what I want when I want. That physical freedom has limits, my spirit, however, does not.
Letting go takes a lot of courage. To do it over and over again is completely exhausting and causes me to question everything.
I know that I keep pushing the envelope of the spirit world by challenging what we know is true. I accept the path of the warrior because a warrior’s fight is never over, but he or she is prepared for the battle. The warrior learns who his/her friends are and are not because that label is held with honor and esteem. Friends don’t betray friends, it’s that simple.
I may be held within this cage of Brain Injury, but I will sing and dance because that’s who I am meant to be and damn it, I am still free!
The fight of my life may be focused around Brain Injury at this stage in my life, and it may always be that way. What I know is this, the fight to be heard and seen is nothing new. Don’t we all fight to be heard, seen, validated, accepted?
This is one small step toward my claiming my life, loving and honoring the spirit that is alive and well within me.
Tags: betrayal, courage, family, friends, loss, trust, warrior heart, wisdom
Back to the Beginning: Don’t Fall! (posted Nov. 16, 2009)
“Be careful out there, don’t fall,” she added, “and call me if you do.”
Her words rang in my head as I sat there contorted and embarrassed on the fence stile, too ironic to fathom in the moment. It hadn’t been more than ten or fifteen minutes prior I was telling her my new injury has caused me to lose balance, so when I get dizzy, it’s time to stop whatever I’m doing. I must rest.
No one saw me fall, and no, I didn’t call. At age 42 falls do not make sense to me. I had been extra careful, holding onto the fence post for added safety or so I thought when my right leg went out from under me and I landed on my right sitting bones, left leg bent underneath and right elbow taking the brunt. Owie. Nothing broken.
Not too many weeks ago I saved myself from an almost fall, but in the act of saving myself managed to injure a lot of the places that were healing from the February side swipe accident.
Here I am again, having physically fallen, breathing deeply, trying to accept reality as it is, and oh how I’ve made friends with my ice pack lately! The bump on my elbow has gone down, my right hip and sitting bones hurt, but I’m still here and I have things to do…slowly!
Falls remain the number 1 cause of Head Injury. Drats! But thank God I did not hit my noggin. Hopefully the gray matter didn’t get shaken up too much.
God grant me the serenity to accept the things I cannot change (things like Brain Injury, gravity) Courage to change the things I can (my response, outlook, attitude, find humor, make jokes, etc.)
And the wisdom to know the difference.
Tags: falls, serenity prayer, acceptance, humor
Back to the Beginning: A Place of Peace (Nov. 17, 2009)
Finally – my bedroom has been painted from the ceiling, trim, walls, baseboard trim, and yes, even the floor. It’s beautiful. I bought this home as a repo, so it has needed TLC for years. The window treatments are all in place, secure, with traverse rods, valances, etc. It’s very pretty.
I’d moved my bedroom out into the living room not knowing how long it would take me to complete and I’m quite happy to be back in a this beautiful bedroom!
It is a blessing to have a place of peace, quiet and restful, not visually stressful or worrisome to look at and think of the care and attention it needs any longer.
Last night was my second night in my place of peace, wonderful! When one’s home becomes their place of dwelling pretty much 24/7, having a delightful place means so much more.
Tags: housebound shut-in, peace, TBI
Back to the Beginning: Grateful (posted Nov. 19, 2009)
Just got word from Unemployment I am eligible for an extension as my benes exhausted this week. I was worried I’d have to dive into my meager savings, feared more debt, and continual dire survival. After ongoing stress, this is a welcome reprieve.
Today has been a dark, rainy, melancholy type of day. It’s the day I’ve needed to face for a long time, boxing up stored childhood treasures to get rid of. It is a strange thing to let go of all I’d learned to grasp and hold onto. It definitely feels like a groundless, surreal moment, certainly not how we were raised to move into a home and stay there for 30+ years.
This home and owning a lot of unused stuff are too much for me post-injuries. Clutter and deferred maintenance drain brain bucks in split seconds and are overwhelming. I see why people get help doing this type of work.
I went through a box of my Late Mom’s tools she used for sewing and crafting. I’m grateful Mom modeled respect and care for her tools, so much so, even over 25 years since her passing, they’re in excellent shape. Someone will get years of enjoyment from them.
I am grateful I only have to do this process once.
Although today is a work day of moving clutter, I am grateful for the awareness when to stop and rest. I caught myself once already ricocheting off the stairway walls – hello, that’s a sign! The new body pain from the most recent fall is also a sign to pay attention, listen, slow down. Not easy for this ex-Type A!
Tags: childhood treasures, decluttering, gratitude, letting go
Back to the Beginning: Positive Signs (posted Nov. 24, 2009)
Throughout the day I tried feeding Rudy more varied foods, she continues to drink a lot of water, so I take that as a good sign. She hasn’t had a bout like this since we were in Montana where Richard and I seriously thought we were going to lose her. Oh my gosh, we cried so much! Richard even offered to make a final resting place for her on his property if she didn’t make it.
I stopped at the grocery store this afternoon to pick up some sliced turkey since that’s what got her through the last downturn. People, she inhaled it! A GREAT sign! Nothing like a sick Labrador Retriever inhaling food as is her norm. Rudy has gone back to resting and is still moving slow, but will take it moment by moment and continue pouring on the love therapy!
She still hasn’t touched her normal food which is strange, so I’m trying to get her nutrients in with things like peanut butter and turkey.
I would not fault Rudy if she were too tired to fight on, she’s been dealing with this Cancer for over two years now, talk about a resilient heart! As long as life holds her here, she is not suffering or in any pain, I will be fueling her joy for life and trying to be 1/10000th of the friend she has been to me.
Animals, they make far better people, than we do.
Tags: animals, dogs, kinship, love, Rudy, TBI
Back to the Beginning: Tough 24 Hours (posted Nov. 24, 2009)
My dear dog Rudy has stopped eating her normal food. She’s moving pretty slow and this morning I tried juicing for her, she lapped it a couple of times and walked away. I then just made apple juice thinking that’d taste better to her and same results.
She’s still wagging her tail tiredly, gets up and around from time to time, maybe she just needs to rest and will rebound, I don’t know.
She did enjoy several slivers of a green bell pepper, her favorite veggie. The Brussels Sprout I gave her yesterday is still on the floor. I’m offering her the supplements that help her joints but even those are not going over well.
Another cycle of wait and see, do everything I know to do, watching and listening very carefully. She does not seem to be in pain, and when she lies down on her bed, her breathing seems a little labored.
I’ve never been one to embrace or accept death very well, but I think the more I can honor that as a natural part of life, the more present and available I am for Rudy in the moment, no matter what.
It may be a difficult Thanksgiving week and I’m concerned being gone all day Thursday for the family gathering several counties away.
On another front, I just received a quote for getting my house hooked up to sewer since the septic is waning. I’m going to the City for a low-interest loan to replace it (yeah, further debt), so far, the bids range between $8,900 and $10,000. At any rate, it will be nice to have fixed and taken care of for my remainder of time here, and have a new system for the next folks.
Oh, and my doctor hasn’t okayed my sleep medicine refill so I’ve been going without. Honestly, if I could live without the stuff I would! However, Brain Injury changed everything. This gal who never had trouble falling asleep before can’t get to sleep and wakes up a lot. We’ll see how it goes, I’ll contact my Neurologist and see what he thinks. I’ve tried other meds, OTC, and prescriptions and they didn’t work.
Tags: pacing and planning, Rudy, TBI, beloved dog, Cancer
Back to the Beginning: Vet on Vacation (Nov. 26, 2009)
It just dawned on me to call the vet’s office to see if there is an outgoing message with possible hours for tomorrow. They closed Wednesday at noon and will not be open until Monday.
There is an emergency number and this is frightening for two points, all the stuff Rudy has going on and seeing a new vet who doesn’t know her, and this will cost an arm and a leg from me and every person on my block.
Honestly though, I can handle financial stress far better than the emotional stress watching my best friend going through whatever this is. Since her vet did find a large tumor in her stomach last visit, I would imagine we’re close to the end, or in dire need of surgery if that is an option at this point.
Tags: TBI, mTBI, vet, financial stress, emotional stress
Back to the Beginning: No Travel Today (Rudy) (posted Nov. 26, 2009)
No Travel Today (Rudy)
I believe Rudy is in the process of dying, she has completely stopped eating. She continues to drink water, go outside to potty, but for the most part, has that ‘faraway’ look and seems lost.
She sniffs at food as if she is interested, maybe tiredly wags her tail, and then walks away. I can’t make her eat and I don’t know what else to do, I’ve tried everything. I tell her it’s okay, she’s a good girl. (Love in the beginning, love in the middle, love in the end.)
Last night around 10 pm, she threw up, she threw up again this morning around 7 am. I went to the grocery store last night in hopes I could get her some more turkey to keep her holding on until tomorrow when I hope the vet would be in his office. The timing of this around the holiday is tough.
I had moved her bed into my room, but this morning she returned to her usual spot, so I brought her bed back out. I noticed her bed was wet, maybe she is losing bladder control too.
I trust her body’s wisdom in this process and there is something/someone who loves her way beyond what I do.
I am, however, quite naturally, a wreck. I had printed directions, my ferry tickets, everything I needed to get to the Thanksgiving dinner today and I’m not going. My dog has never wavered in being there for me, this is the least I can do if this is her time to transition from this world.
I will need to call my family as soon as I can this morning to let them know. It would be nice to have their support, not guilt or disappointment, but we’ll see. My dog’s love has never wavered, my family’s, I wish I could say the same.
I’ve put a half circle of bowls of food out for her, ranging from raw eggs to kibble to soup and chicken broth. Nothing appeals.
I will blog as I can when I can, in between times of snuggling and being there for Rudy.
Back to the Beginning: Still in the Fight (posted Nov. 26, 2009)
Rudy is still here, not eating much of anything at this point whatsoever. She had a couple small bites of sliced turkey, nothing more. Her buffet of food remains available if/when she wants it.
I called Dad and Barbara to tell them I couldn’t make it and it was hard to do. I thought I was doing well, but honestly, have managed to only not cry a small portion of the day.
When Dad got on the line he said he was sorry to hear I had a problem, he thought Rudy just had eaten something that disagreed with her, and she’s okay now, right?
I said no, she has Cancer and she is breathing but not very responsive. Dad and I may have only talked a couple of minutes he asked if I was feeling okay because I didn’t sound very well. I told him
I’ve been crying and then he started to cry. Dad has changed a lot since his open heart surgery and is far more easily depressed these days. It broke my heart he started to cry. He told me to take care of myself, that was the important thing, and before he hung up the phone I heard Barbara comforting him, “It’s okay, Love.” What a tough, tough call.
Regardless of my favoring animals over family for probably pretty good reason, I really couldn’t have gone because I remain a wreck and would not be much for company. I don’t know if I could be there without crying or worrying about how Rudy was doing at home.
I think in all my adult life I’ve never missed a family gathering, that’s an oddity. I’d leaned to worship obligation long ago, despite whether I actually wanted to go or not.
I am dearly, dearly hoping our vet will be in the office tomorrow despite the holiday weekend, I’m not sure how I will get her into the full-size pickup truck if they can see her, I think I’ll try making steps out of milk crates. At least that’s the idea right now.
I’m only letting Rudy outside in the front yard to go potty so she doesn’t have to navigate stairs and it’s a much shorter walk for her.
Rudy continues to be less aware of her surroundings, even the two cats fighting a few minutes ago didn’t do anything to make Rudy get up and break it up, per usual. I continue to stay with Rudy, loving on her, sleeping next to her, watching her. She is tremendously tired, even when up on her elbows she has her eyes closed and looks to be fighting sleep.
At any rate, I have to find out what this is. Rudy continues to slow down and is a little wobbly from time to time walking. Yet she is still drinking a lot of water. We’ll see. As long as Rudy is still here, I will be there for her and we will fight this together.
It is a long, sad day here at the house. I’m playing music in hopes that is helpful, have a mat and bedding down on the floor for me, and the heater pointed in Rudy’s direction. Anything humanly possible to help.
Back to the Beginning: RIP Rudy (posted Nov. 27, 2009)
This is the turn of events, please forgive grammatical errors and such, I have had very, very little sleep or food…
Rudy woke me at 12:50 this morning to go potty, I let her out, we both went back to bed and then next thing I knew she was there standing in the doorway with that look. I had called the emergency vet and since they’re open 24/7 they said I could bring her in anytime, and I was planning on daylight, but felt we needed to go.
The people there were very kind, they did an exam of Rudy and we approached the subject of euthanasia. The blood left the arm that was holding Rudy on the leash. But Rudy’s eyes were bright and her tail wagging so we decided to see if a liquid diet would work. Rudy was able to keep water down, just not solids.
They gave her an antacid shot as well as an appetite stimulant and offered her some Ensure-like stuff for dogs, and Science Diet liver pate. Rudy ate neither at first, then by the time we were ready to leave the clinic, she ate all the liver pate, I thought this was a good sign.
We were finished there around 3am I think, got back home and this time I laid down by Rudy. I had emailed Richard a couple of times, the last was please call if you’re awake. I think I called him at 5am his time, 4am here. I told him we broached the subject of putting her down but wanted to try one last thing. I’d wondered if I’d betrayed Rudy by bringing her back home. She had given me that look before 1am that she was ready.
I went to the store, bought baby food flavored like meat, cottage cheese, and beef broth. I tried liquefying a couple and Rudy would have nothing to do with them. Nothing I was trying was working. I felt she was listening to her body, I wanted her to eat, her body was telling her no more. This was excruciating to watch my dog, who I affectionally called, “my puppy vacuum” not eat at all.
I took her with me to the Post Office since she loves to go for rides and it was a beautiful sunshiny day, I picked up the package Richard sent and we came right back home. Rudy had eaten about half a can of tuna fish before we left (because the cats were swarming like vultures!) and when we returned, I opened up the box and it was peanut butter cookies. No wonder Rudy liked the smell of it as soon as I got it in the truck!
Once back at the house I parallel parked the truck to the house to make the passenger side just a little lower for Rudy to get out and in of, it was getting to where it was a real struggle for her to get into and out of the truck. She’s too heavy for me to lift, I’m afraid, especially since my last fall and injuries.
I called the vet knowing I needed to get her back in today, she had her moments but her bad moments were more and more painful to watch. I never heard a whimper, whine, cry, or anything, just a lot of discomfort and a depressed spirit. They would have to call me back, the vet was in an emergency. No problem, I said, there is no rush with this.
I opened the cookies and took a bite and then offered a small piece to Rudy. Much to my surprise and relief, she ate it and didn’t spit it out of her mouth or turn away like she did so many other things we’ve tried. That seemed to help her perk up.
The vet called and said they reviewed Rudy’s file, the doctor on duty early this morning spoke to the on-call doctor about Rudy’s condition and the agreed it would be fine to bring her in whenever I am ready. I laughed because I said I just took Rudy to the Post Office with me and she had gotten all excited about it, like her old self.
I’d have to say the ebbs and flows of an animal with Cancer are very, very difficult at best. The good moments, or return to old self are a joy, the bad moments, the times of watching her not eat and begin to thin, excruciating.
We went into the backyard for the first time in a long time and she played a little bit until she got that look of unfamiliarity with her toy. I knew it was time. She was at a good place, getting just a little strength so the last truck ride would be as pleasant as possible. I was both anxious and nauseous, oh what a tender heart will do at times like these.
I called the vet and asked if I could bring Rudy in now, I needed to do this before I lost my courage again, it’s time. I won’t say the Cancer won, but I will say it took her life. I will say I choose to believe love won.
The drive there was melancholy, although Rudy had just been energetic, she now laid down, had her eyes closed on the ride. I started tearing up and told myself to go to the places that scare me, to be present for Rudy because she is here right now and to love on her right now. Stroking her head helped divert my attention from my own body tightening up, difficulty breathing, etc. I kept telling myself to honor this moment, and to honor Rudy.
Again, the staff there is very straight forward, compassionate, and kind. They asked if I wanted to be with her and when I made the face of fear and said I’d heard bad things they told me it wasn’t like that there. Just as the early morning doctor had told me, it’s a peaceful, painless procedure.
I nodded my head – yes! I wanted to be there, Rudy has always been there for me. Everyone took their time, they let me decide when it was time, whether Rudy was on the floor or table, and only went ahead when I was ready. Very supportive environment for such a difficult, difficult task.
They took her out and inserted a catheter, I tried calling Richard. Just then my friend Kathleen called me to touch base, my cell phone battery was almost dead so we had to talk fast. She sent her loving support telling me she was with me.
I tried calling Richard a couple of times again, and only received his voicemail on his cell phone. I decided to turn my phone off since the battery was so low and it’s asked of folks in the exam rooms.
I had wanted to know about funeral plans for Rudy, Richard had emailed me today saying he was offering a place for her final resting place in Montana. I had to make a decision about what to do with her body, a private cremation is expensive, a group one (no ashes) is affordable, and taking her body would cost nothing.
I decided on group cremation, signed the paper and the vet tech came back in with Rudy. I asked for Rudy to be as comfortable as possible, this is about her, not me. The vet tech got a blanket and both Rudy and I got on the floor and left us alone, the vet would be in shortly.
I was offered as much time as I needed every step of the way. The vet came in, explained the procedure, waited on my questions, was very gentle and quiet. I told him Rudy was just like her old self at the clinic, but at home, she is tired, sleeping with her face to the wall, many times unresponsive. He said the excitement of the ride coming in, adrenaline, etc., was understood, but once she gets anywhere she’s much more comfortable lying down. I agreed, she’s tired.
When I was ready, he was ready. I laid down next to Rudy’s right side and stroked her head, telling her how much of a good girl she is, how much I love her, and said the phrase I always said anything I got her out of the vehicle, “Wait, I’ll get you on the other side.”
I okayed the muscle relaxant, that was followed with saline. Rudy’s eyes drooped a little more than they already had. I told her it was okay to just rest, to take it easy. She laid her head on her paws and her eyes remained half open.
The doctor asked if I was ready for the next step, when I was ready I gave the ok, kept petting and talking to her. I don’t know when her spirit left the room but this time, lying on the floor I felt the blood leave both my legs.
The doctor examined her and declared her passed, and then gave me as much time with her as I needed. I kept petting her, I’ve never been around the process of death or a dead animal before. He handed me some Kleenex and quietly left us together.
It was so hard, but also a relief in a way. I’ve been so scared for so long, I’ve been watching Rudy really hard to make sure she’s always breathing because I was afraid to find her dead, now it was strange to not see her breathe. It was an end, but also a freeing for her. Her quality of life suffered, she was miserable, depressed, sleeping all the time, never really her happy self.
I turned my cell phone back on again and surprisingly this time there were three battery bars, not the ‘low battery’ indicator or message. I called Richard to see if I could reach him again, he answered. I told him we just put Rudy down, and that’s when I really started to cry, hearing him cry.
We talked about burial plans, ideas, etc., and decided the path I’d chosen was the best. I shared with him the process, everything was peaceful, we were supported, Rudy went to sleep. It was her time. By the time we ended the conversation I’d forgotten all about the goofy cell phone battery. I purposely left her leash with her, I don’t know what I’d do with it, and the reminder, I think, would be too painful. Richard and I made sure each other was okay and then we hung up.
I wiped my tears, and quietly left Rudy’s body and thanked the gal at the front desk for their support, honoring and respecting all of us. I said I appreciated their mindful procedure and gentleness, taking time, etc. When she went to charge me, she told me there would only be one charge on my card, not the charge for the earlier visit’s exam, medications, etc. I think I said, “What in the world?!!” She repeated it and I said, “Bless your heart, thank you.”
I’m not sure which broke my heart most in all of this – the initial staggering diagnosis two and a half years ago, lack of finances to afford her the best of care, the treatment I could afford, the recent discovery of the large mass in her stomach, and then this final moment together.
I completely understand after so much heartache people choose to not have pets again. I can’t make that decision; I think all things considered, I would choose love. The connection with Rudy, the fun, the rides we went for, all the playing, all of her silly antics, I’d say that was heaven on earth…and I was NOT a dog person before I met her!
Perhaps I’m simply called to love the animals no one wants anymore. Rudy was returned to the pound twice and I told her, unless God says otherwise, we’re together for life. She would never see the pound again.
Certainly I deeply regret not having funds to have done more for Rudy, that in itself is probably the biggest heartbreak. It’s vital to take utmost care of my animals and with the changes in circumstances that also affected my animals, and that, my friends, is a lasting pain.
I would like to see more resources going to help people who love and honor the spirit of animals keep them than turn them over and over again to the pound or face euthenasia out of convenience. There is a population of loving disabled people who are lonely, need companionship, and reason to get up every day.
I think honestly, Rudy would have been putting her best paw forward as long as I kept asking her to try. Those eyes early this morning said, “Momma, help me go.”
Love in the beginning, love in the middle, love in the end
Tags: Death of beloved pet, Rudy, loving enough to let go, being present, honoring, losing a friend, saying goodbye, man’s best friend, dog, mTBI, TBI
Back to the Beginning: Quiet House (posted Nov. 27, 2009)
Coming home to the Rudy-less house was something I tried to prepare myself for, she won’t greet me at the door with wags and smiles. Seems the heart knows one thing while the mind knows another.
I miss her terribly. I miss having my canine pal to talk to, sing with, joke with. It is so quiet here now.
(It’s just not the same trying to talk to the cats.)
My eyes kept looking over to her bed, not consciously, and would encounter a sadness each time wishing she were there. I finally decided to remove her bed from my sight to help me adjust to her not being here. Maybe it will help, not having visual reminders, I don’t know.
She was part of my life for ten years, that’s a long time. She was also in the car accident with me on the freeway.
I am sad, missing my friend. I am sure I will continue to sob as the waves of grief hit, I am allowing this sorrow to have its course.
Thank you, Rudy, for teaching me things only a wise, patient canine heart could, for letting me love you and be loved by you. Now I see why dog people are so upset when they lose their canine friend.
My heart has not been at ease since Rudy was diagnosed over two and a half years ago. Time, and loving on the animals still on this earth will help heal and bring warm memories to surface.
Tags: Adapting to loss, grief, bereavement, empty house, quiet, TBI, mTBI
Back to the Beginning: First Day (Nov. 28, 2009)
I had a rough night of sleep last night as I was afraid I would dream of Rudy and I did. It was tremendously hard to rest with all that had happened during the day.
I had a dream I was trying to feed Rudy and she was giving me that look of wanting to be obedient but wasn’t physically able. When I woke up I remember getting up on my elbow looking at the bedroom doorway expecting her and remembering…
The alarm went off as usual, without Rudy’s presence I didn’t want to get up. I didn’t want to face this first day without her here. I got up, fed the cats and went back to bed.
Richard usually calls between 6:30 and 7:00, when he didn’t I turned off the phone knowing his schedule was different this morning but he said he’d call, so no worries.
My little black kitty who always sleeps on the bed with me had jumped off the bed and stayed in the kitchen. My little grey kitty, Precious, came to snuggy…this is a rare thing, he doesn’t usually try to impose on Tux’s bed.
He jumped up and snuggled for several hours with me. My, what comfort animals offer us, without a big song and dance, pride and ego, but with a gentle, quiet knowing.
I called Richard and was glad to find he was able to answer his phone and talk despite him having company. He’d been outside working on the barn in 27 degree weather and welcomed a break inside the house to warm up.
I shared Melissa’s idea of the photo of her kitty and said I grew up in a house where we had no family photos, but maybe it’d be neat to start a wall to honor my animal family. He agreed, adding they’ve always been there for me. I think it’s important to fully love them while they’re here and honor their memory somehow when they’re gone…let me preface that with, when I’m ready. It’s too soon for me to have Rudy pictures just yet.
My little grey guy hasn’t let me be alone much this morning and he’s not usually like that. He’s usually curled up in his snuggy spot after coming in late in the evening and sleeps in until about noon. I’m making sure I’m spending more time with the cats because I know they miss Rudy too.
I don’t know how I’ll spend the rest of the day, will just take it moment by moment and go with the flow.
I hope future dreams will show Rudy okay, playing in heaven, chasing cats, squirrels, birds, all without fatigue, discomfort, or need to eat them! :-)
Tags: Insomnia, grief, first day without Rudy, Rudy dog, snuggies, Precious kitty
Back to the Beginning: Second Day (Nov. 29, 2009)
The heavy cloak of grief did not feel as weighty today. Oh yes, still a lot of sadness, but the deep sobs have subsided for now.
I will continue to miss her and now that I’ve wrestled with the regrets and all the complications involved, adrenaline, fear, and such, I am beginning to feel peace. So many things I wish I could have done different, afforded her better care, etc. I have to forgive myself as I’m sure Rudy held no resentments, we learned to love each other, foibles and all, it’s as simple as that.
I have been in touch with a woman on freecycle who is always looking for freezer burned meat for her dogs. I told her I have quite a bit of ground beef that isn’t freezer burned, and I would love for her to have it. There is approximately 22 pounds of meat I just bought this month.
She used to be a patient at the chiropractor’s office I used to work at years ago, I know she’s good people and am happy to send my love for Rudy along with it. She may also be able to use the kibble left over. She also does a natural/raw foods diet, so for many reasons it does my heart good to see this going to her and her animal family.
I’m also going to give her the two Safeway gift cards that were given to me, I never buy groceries there and I thought with the holidays coming up, it’d be a super neat blessing. She has a husband and two sons that by now must be in their mid-20′s, so I hope that will make their Christmas more bright.
I am really trying to get the sense Rudy is okay now. In fact, the day I came back from the vet, the woman posted her ad on free ycle looking for freezer burned meat (imagine, the timing!).
The other thing that struck me as odd that day was when my cat Tux sat at the heater as she likes to do, there was a little whirlwind of cat or dog hair that swirled around a couple times. I’ve never seen that happen before, and wondered if it was Rudy’s way of one last time playing and telling me she’s really okay.
Crazy or not, I’ve had signs which I believe are loved ones who have passed on letting me know they’re okay.
This afternoon while snuggling with Precious, my little grey kitty, I asked him, “Do you miss Rudy?” Surprisingly, he shook his head no. They had been friends at one point and then Rudy had him in her mouth shaking him and that ended their friendship. So I asked then, “Where do you guys go after you die? Is she okay?” With that, he did not answer and I figured that is just something I have to learn on my own.
I’ve collected Rudy’s toys and other items to be donated to St. Vincent de Paul, I know they will be sold at an affordable price so someone else will get use and enjoyment from them. And I know the money they make goes back into their food bank and new homeless shelter they just built. They do great things in our community; I have no qualms about supporting them.
I called Wal-Mart yesterday and was able to get them to refill my sleep meds, I don’t know why it didn’t go through the first time, but the call fixed that. I picked them up today, so hopefully tonight I’ll sleep through the night for the first time in a long time. I think I’ll call my Neurologist and see if he wouldn’t mind taking over prescribing it and allow me to do the automatic refills through Wal-Mart instead of having to get my new physician’s approval each and every time.
I was in the Living Room just a few minutes ago and found Rudy’s brush I’d been using, Rudy always enjoyed being brushed so thought it might be of comfort to her. I’d forgotten I’d left it there and when I saw it, my heart melted and I said, “Awww…” I smelled it to see if I could recapture her scent, none was present. I pulled the hair from it and told Rudy again I love her and God bless her and then tossed the hair away and put the brush in with the donations. I miss her so much.
I am slowly working back to life’s routines without Rudy. It’s amazing how much a dog wraps herself around your heart and never, never lets it go.
We all seem less happy without her, even the house and yard feel like they’re missing her too.
Tags: Grief, insomnia, saying goodbye, donations, giving, st. Vincent de paul, helping others, finding meaning in loss, death
Back to the Beginning: Back to Fight or Flight (posted Dec. 3, 2009)
While taking time to grieve Rudy’s passing, I got a call from the City saying the initial estimate connecting to the sewer was off, way off. Instead of maybe $10,000 we’re looking at $16,500.
Shocked I said they really should sedate people before telling them news like this. He laughed, but the shock stayed. The first pump they estimated wasn’t the right one, so here we go, folks, ready or not.
I also found out later that day although I’ve prepaid an expense of mine, they are raising fees by $100 per month beginning January. I can’t afford to stay, and my goal of listing the house in the end of January is becoming more like a necessity than a vague estimate.
I called Richard and told him I’ve been so patient all these years, accepting the hardships that came along and I finally feel like I want to bolt. That’s not at all my typical nature as I don’t believe it’s right to run from trouble, but we talked about ways to expedite my departure.
I think since I’ve fought so long and so hard without being able to change the results perhaps flight isn’t such a bad option, as it seems the only option.
I made some phone calls yesterday to get some of what had been my lesser priority items done as soon as I can. I don’t have the luxury of taking time now, my savings dwindle, and I can only hope finally, once I sell the house, perhaps better days will come.
I’d told my Occupational Therapist after this last accident that it really has felt like I’ve fallen from God’s grace. Never in my life have I had a continual domino affect of really bad events, no matter what I’ve thought, done, believed, I’ve been powerless to change any of it.
I do hope to find favor selling the house or I will surely face bankruptcy or foreclosure. I’ve worked my life to have a excellent credit…
Tags: debt, disability, have to move, loans, septic tank, sewer line
Back to the Beginning: Survival (posted Dec. 8, 2009)
Something has certainly freed up in me since I wasn’t raised to be irreverent or disrespectful. Perhaps a little more spunk is returning as the fight for survival is now down to a couple of last months here at the house.
While talking with Richard over the weekend I coined the phrase “giving fate the finger” because it looked like we might be able to trade some things we currently have for barn materials. That made my heart light up and I got excited because both parties get what they can use. Folks out there certainly help one another, and I like that!
I spent some of Saturday with my friend Kathleen out in beautiful Port Gamble, it was a lovely, albeit it freezing cold, windy day. She’d asked about my truck (yes, the one I affectionately call “the moss mobile” for the moss that grows on it!), whether it’d be going to Montana with me or not, I said no. She expressed interest, I told her that’d be neat to see it go to her, I’d make her a good deal. It has been what I call a ‘blessed’ vehicle in that it has been owned by truly great folks. So we continue the legacy and get to help a dear friend. Oh my goodness, giving is a wonderful thing!
It is daunting, all the stuff we go through in this life. It feels good to turn it into something positive somehow.
Garth Brooks, “The Change,” one of my favorite encouragement songs, the chorus:
“And I hear them saying you’ll never change things
And no matter what you do it’s still the same thing
But it’s not the world that I am changing
I do this so this world will know
that it will not change me.”
I was riding high on my irreverent journey until yesterday when I received a bill in the mail from unpaid medical expenses entirely due to the most recent accident in February that I did not cause.
The PIP coverage did indeed run out and I got caught in the cross hairs. Heartache, anxiety, etc., and Richard wonders why sometimes I sigh so deeply, it’s just because life is heavy-duty sometimes.
I’ve talked to two attorneys, a head-injury specialist and a local attorney, neither will take my case.
Yes folks, this is America and terribly difficult things happen, and when you don’t have a major case, good luck. It does become exhausting because there is such an ongoing spiral of negative events.
I finally broke down in tears yesterday at the laundromat. Yes, the laundromat. I’m still having to do laundry elsewhere until the sewer issue gets resolved. I had just picked up my mail and thought I’d bring it with me to read, not only did I find that huge unpaid bill, but my vet sent me a sympathy card. That sent me over as I was only now washing some of the blankets Rudy had taken as her own.
Oh how I miss that girl!
I am grateful for laundromats and having the funds to do my laundry, and I’m grateful for my vet who’d been Rudy’s vet since I got her, and into whose hands I could place Rudy’s life and never worry.
The struggle is exhausting, disheartening, and can break my spirit, but those who know me well know I’m a fighter who doesn’t consider giving up or quitting an option.
Looking to bless and be a blessing while testing spiritual laws in this seven-year game of survival.
Tags: debt, selling home, survival, TBI
Back to the Beginning: Herniated Discs (posted Dec. 9, 2009)
As of this last accident I have one major injury I cannot seem to overcome with nutrition, exercise, etc, that is these three darned discs on the right side of my neck.
I was out raking today, I really need to rake up and save my mulch before the yard gets torn up for the sewer connection I couldn’t do it. I started on a small section that did not even have mulch in it and got stopped in my tracks by pain.
I’ll have to put off any more raking for a day or two until this inflammation or whatever it is subsides. Ice pack, here I come! Tremendous bummer to live with pain, most of it I’m used to and ignore but can’t with this stuff. It’s the kind that doubles me over and I have to stop, my arms get weak, I’m done. Drats.
Maybe instead of singing Three Blind Mice I should be singing Three Herniated Discs! A little humor now and again amidst the insanity is a good thing. Sure wish for the ability to help it heal, if it can.
I am grateful I got to be outside for a little bit, enjoyed the beautiful (and frigid!) weather, see a Bald Eagle, a Hawk, some Chickadees on the feeder, and a Hummingbird. Lovely! Does my spirit good to do what I’ve always loved, enjoying the beautiful outdoors.
Tags: herniated discs, neck injury, TBI, vertebrae
Back to the Beginning: Tux (posted Dec. 11, 2009)
You know the feeling: heart racing, anxious, worried, heightened senses? Yes, a trip to the vet, this time for my little black kitty. Despite the huge cost, I gave the go ahead to test Tux to see what might be wrong with her.
Her heart and liver are a little enlarged, not too much to be concerned about. She’s slightly anemic, and at this point cannot rule out tumors in her tummy. (Needless to say, with the last 2 1/2 years of battling Rudy’s Cancer, this is not helpful news.) Her blood sugar was up, but they suspect that due to adrenaline caused by the visit to the vet.
What they do think at this point is a change in diet would be helpful, a more bland boiled chicken and white rice and see how she does.
Tux did GREAT, they x-rayed her, took the samples they needed and she did not need to be sedated, the doctor said she’s just a really good cat. She is, she’s always been a very sweet kitty.
It’d be advisable for these folks, when they’re quoting how much this care is going to cost, to sedate the human first, or something! I put over $800 on my credit card because I was completely petrified of another animal’s health care crisis, and Tux’s care has been put on hold while Rudy was center stage
I debated whether I’d done the right thing or not, but I have to know. Back in the day when work came easy, I had a financial buffer in my checking account alone of $1,000. Any time there was issue with one of the animals, they went to the vet, no question. Their care is priority, and still is. Certainly don’t have that kind of money or ability today, I have to take care of them.
They love us with their lives, the very least I can do is my utmost for them in return.
Tags: kitty, TBI, testing, Tux, vet
Back to the Beginning: Rudy’s Love (posted Dec. 13, 2009)
Below is a favorite photo of Rudy, with toy, she loved, loved, loved playing! She wanted to play 24/7 and would coax anyone into playing until they were wore out and said the familiar “enough, Rudy.”
I am finding Rudy’s love hasn’t ended. Her memory continues to be a delight although I miss her terribly. I am finding meaning and satisfaction in giving her things to help others. Although Rudy was terribly protective of her food, I think she’d be happy to know it’s going to help other animals.
Earlier this week I was able to give the frozen meat that was Rudy’s to a gal on the freecycle list. I had known her years ago when I worked at the chiropractor’s office and knew I wanted Rudy’s food to go to her. “She’s good people” as a friend of mine used to say She accepted the kibble too.
The supplements I’d been giving Rudy were shipped to Montana for Richard’s neighbor dog who is having mobility difficulty. Her toys and other usable items were donated to St. Vinnie’s. I’ll post to the freecycle list the other supplements I was giving Rudy, I’m quite sure someone could use them.
Rudy had many terms of endearment including: Boo Doggie, Boo Boo, Rude Doggy, Snoopy Nose, Rudy Tooty Fruity Head, Rhoudini (yes, she was an escape artist Houdini could admire), and Rutabaga.
She was fast, she was fun, she loved to roll the toy to you with her nose, she was an excellent protector, she loved people, she could sing, she was a delight. I am most grateful she was my friend, my protector, and traveling girl.
Tags: beloved Rudy Dog, friends, giving, grief, loss, loss of a pet, meaning, TBI
Back to the Beginning: Refinancing Runaround (posted Dec. 16, 2009)
I have very minimal credit card debt (trips to vet = $1,100 or so) and only the mortgage to take care of. With advice from someone at a non-profit consumer credit company, I called Wells Fargo back in July or August. This was my last chance, final hope.
In August, I filled out the entire paperwork packet they sent, mailed it Priority with Delivery Confirmation just to be on the safe side. Some time had passed when I received a call from them saying they hadn’t received my paperwork. I told him the Delivery Confirmation shows it was
received and I stated the date. He then said, “Oh, I see it, we’re working on it.” Yeah right.
I then get a call saying they need the original loan document showing how much I earned at the time I signed the loan in 2002. This was NOT part of their initial packet, I contacted the person who processed my loan and got the information to Wells Fargo.
I received in the mail the entire packet again, am I supposed to fill it out AGAIN! What? I did not fill this out, and just thought it an error, filed it away and went on with life.
I received a message to call Wells Fargo, the woman said I indeed needed to fill the paperwork AGAIN. Oh my gosh! I fill it out and send it in, this time making copies of everything, and wrote the date sent 11/17/09.
In between all this I’ve received three voice messages from Wells Fargo saying they appreciate my patience as they try to work out the best solution for my loan. Yeah right.
Last night I received a voicemail message to call Wells Fargo, I did this morning. Guess what? I have to update my financial sheet and my hardship letter. What the? She informs me this has to be updated every 30 days. She says they haven’t received an update since August. I said, no – that I had mailed it in within the last two weeks. Strange how when she called my paperwork ‘wasn’t there’ and now that I told her otherwise, she ‘found it.’ I just sent in the same forms she’s asking me for now!
I blew my cool, told her this is ridiculous, can’t they just change the date on the form, my circumstances have not changed, they can verify that with Unemployment. I told her I initially filed in August and this is crazy it’s taking this long. She said they cannot change the date on the forms I have to send the other one in and change the fricking date myself. No, I don’t have a fax to send it to them ASAP.
Oh my gosh. This is the uglier side of human behavior because those who actually care about people actually HELP you in your time of need not put you through the wringer.
It amazes me in this economy with so many people struggling, we can spend money on electronics, music, entertainment, or whatever but we CANNOT keep people in their homes.
Staggering to think it took a tragedy like 9/11 to bring harmony, even in Washington D.C.
I am really doubting we are the most intelligent species. The more I know about people, systems, bureaucracy, the more I really like animals.
I was told by a gal I should file Bankruptcy, she had a friend who filed it twice, it wasn’t too bad, and she got to keep her home. It really helped with her credit card and other debt. I told her I didn’t have credit card debt (’twas true at the time, this was before the vet visits.) She said I should still look into it.
What if I don’t want to? What if I actually want to do the right thing and not use or abuse the system or tax-payer dollars? And what if I actually want my conscience to be clean?
This is another one of those cases where if you work really, really hard, things are supposed to pan out for you. I do not understand why some qualify for help and others do not. I like adventure, but this free falling stuff, this survival to just scrape by, oh my gosh, I’ve had it…yet I won’t compromise my standards.
From what statistics show on television about people getting the refinancing help they need, we are doing a terribly poor job helping folks. This is corporate greed at some of its worst.
If you do send anything to your mortgage company or insurance company, make sure you have copies and you proof of delivery. Wow, nothing like another fight…
And no, I’m not afraid to run this up the flag pole all the way to President Obama, media, Congress. I may be disabled and on the tough side of life, but I still have a voice, and this is unethical what they’re doing to people.
7:00 pm – just called Wells Fargo back after they left a message a few minutes ago. The man tells me they need all the new documents updated. I told him they were as of 11/17/09 and he told me they weren’t scanned into their system until 11/30/09. Wow.
I need to re-send Income, Hardship Letter, and Financial Worksheet. He had a foreign accent and I said I didn’t have a fax, I would have to contact Unemployment and get a printout from them and that takes a couple of days. He then gave me the fax number. Oh boy.
Tags: bureaucracy, Brain Injury, frustrations with lenders, paperwork, redundant, refinancing runaround, TBI mTBI, wells fargo, mortgage, deceptive practices, bad business
Back to the Beginning: Between Hell and Nowhere (posted Dec. 16, 2009)
I decided to call the attorney recommended by a fellow support group attendee last week. Having gone through this process twice already with attorneys who declined my case, he said, “maybe he can help you.”
Long story short, the attorney believed I was credible, forthright, seemed like a nice person who is obviously suffering. I’d be better off with representation because my PIP coverage ran out and there are outstanding bills, no other insurance. The phone call, like many before, show I have a tough case with little monetary value.
He believes the insurance company will blame the prior Brain Injuries, and this was a “low-impact crash,” we don’t have much of a case. That coupled with the fact I’m moving to Montana doesn’t help. I told him it’s self-preservation, survival. He said you have to do what you have to do.
He starts his cases at the $2500 level meaning if the damage to my car was less, he won’t take it.
Lovely, just one more thing I don’t qualify for.
What pierced me to the core was when he said,
“basically you’re more trouble than you’re worth,
it’s a business decision, don’t take it personal.”
(Did I mention living with a Traumatic Brain Injury is an endless hell?) I know it’s a business decision, that’s what got me here in the first place!
He said he’d take a look at my documentation the week after next but certainly wouldn’t be likely to take my case.
I got off the phone and started crying and pretty much hadn’t been able to stop until Richard called. He asked what was wrong because I sounded different, I told him why.
The Wells Fargo stuff made me mad, this talking to an attorney, stirring up a tremendously painful past, being blunt as he was made me cry. Sobbing I said this is why people kill themselves, because there is no help, and I feel like my world is falling apart.
I’ve done everything I can do to get better and nothing worked, if someone said chewing gum was good for your brain, I did that, physical exercise, nutrition, brain exercises, you name it, I did it. No one wants to get better more than I. But here I sit sounding and looking okay and my life is completely blown apart. There are test results and documentation to show my deficits, but that holds no weight. Odd.
This is what makes me cry, the feelings of worthlessness because my ability to earn a living has been altered by other people’s negligence. I cry because of the lies, how lawyers twist the truth so the insurance companies are not held accountable. The feelings of failure, fatigue, resignation, defeat wear me down. This is a spiral downward and my efforts cannot stop it. It feels like there’s just not enough help in the world to fix any of this.
Richard said there’s a place for me there in Montana, and to leave all this stuff in the past. I told him I was scared because if something happened to him, my whole world would fall apart again. He said he takes responsibility for his health, but that’s a concern for him too.
He put up another wall in Sadie’s stall today and is working to get it finished enough I can move her as soon as possible. Richard did what he could to get me to stop crying, reading me stories about Secret Santas who anonymously help people this time of year. That was neat to hear.
I’ll tell you all this one thing, the reason why I seek to do good, to make a difference, to help, oh my gosh, what else is there? Focusing on the good I can find in this hell is what helps keep my sanity, because honestly this does feel like the weight of the world on my shoulders. At least I now have
Richard’s help so I’m not going this alone anymore.
It is staggering what people do to each other…nothing personal, just business decisions. God help us.
Tags: attorneys, failing, hell, no help, suicidal thoughts, TBI, trying hard
Back to the Beginning: Papers Signed (posted Dec. 17, 2009)
I signed papers today for the sewer connection, with taxes, fees, etc. I am looking at $20,000 more debt. Ouch. Wouldn’t that be something, to have the house sell and walk away with very little equity because I have to pay off this new debt.
It will take me some time to recover from the emotional blow yesterday, I’m feeling like I got the crap kicked out of me by life, again. Terribly tired, walking way off balance, figured if I could just manage to get myself in to sign the papers, that would be a good thing. Brain fatigue was/is huge today.
I made myself sleep because I know I have to get a lot of things done and if I don’t rest when I’m at this level of fatigue, my brain will make me rest. I could suffer another fall and I can’t afford that, heck I’m still recovering from the last one.
Calgon, take me away…life’s tough in the Big Woods.
Tags: debt, despair, Hopelessness, TBI, tremendous emotional stress
Back to the Beginning: Thoughts on Justice/Injustice (posted Dec. 20, 2009)
I have been reflecting on the comments the attorney made over the phone. I said I needed someone who would look into the details and truth of my case. He questioned who would do that?
Who would do that? Are you kidding me? Someone with keen intellect and uncorrupted heart who sees truth and justice above monetary gain, status, the nice car, home, etc. I wonder about my rights to a fair trial. Certainly didn’t happen the first time, the attorneys for that at-fault party’s insurance – who, I might add, are NOT under oath during any of this process – twisted and contorted facts like a clown creating a balloon animal.
Where are my human rights? Where is my advocate fighting for this life of mine completely devastated by Brain Injury yet the very thing that sinks my life is thrown out? It’s crazy. The insurance companies can railroad victims because we don’t have the money to fight.
I do know there is excellent legal counsel out there who do indeed follow the truth to the end and fight like hell to win for their client, and for the truth. This becomes a huge game of “he says, she says,” and if you’ve got high-paid, manipulative lawyers on your side, as the insurance companies do, you’ve got it made.
Where is my justice? My life is still worthy of justice no matter what happens. The truth shall set you free? Does it, really?
Tags: Brain Injury, corruption, deceit, evil, greed, insurance companies, litigation, TBI