When I tell people I am disabled I always receive one of two responses: either the head-cocking-crooked-eyebrow-raised-inquisitive-stare or the kissy face apology one collects when announcing the loss of their family pet. Before you can understand my weirdness (thank you) it’s like, a little important to know a few things about the body but if you were as shitty in school as muy, don’t jump ship just yet as I am the QUEEN of *laywomen’s terms.
We humans have a nervous system with 3 categories of nerves (autonomic, motor, sensory) and nerves are involved in everything that we do from breathing to blinking to thinking. Nerves are also a pain, literally. We feel pain because a nerve is strained, pinched, damaged, or any combination of the three (I’d assume, see disclaimer).
The Brachial Plexus is basically a bundle of nerves that begins at the spine (lower cervical/upper thoracic) and ends around the shoulder muscle area. If that bundle of nerves gets squashed it can wreak all kind of havoc, one of which being Thoracic Outlet Syndrome or TOS which is what somehow happened to me, initially.
Let’s just say that many doctors and diagnoses later, TOS is generally the culprit behind my shoulder/neck/arm/hand pain. My hands go numb if I keep them above or below chest level and it’s not just the numbness; once that kicks in the pain isn’t far behind. My right hand is the worst, some days it never warms up. there is just never enough circulation. I have done everything on the TOS repair checklist, including going under the knives of Dr. Stephen Annest and Dr. Richard Sanders, which was the biggest mistake I have made along the way (hindsight and that 20/20 thing). If you are reading this I beg you please, think THIRTY TIMES before letting those hacks at you! At the same time, I absolutely do not want to discount the fact that I also had an AMAZING surgeon. Dr. Amit Agarwala, of Panorama Orthopedics, was everything we patients’ deserve surgeons to be, yay!
Even now when I reread the above synopsis it sounds like no big deal. In my own words, I get numb and it hurts and shit. I certainly do not blame you if you still don’t get it. Therefore, the only other way I can express it is by doing further soul baring. Sigh … when I was an infant …
Just kidding, there’s no fucking way I’m mentally capable of going back to fourth grade let alone to the pamper years!
Translation to actual life: I spend about 18-20 hours a day laying down, mostly because it’s the only way I feel the least amount of pain while maintaining the greatest amount of circulation. Laying down is the only way I can keep my arms at a non-numb level; aside from standing in front of something. However, even if I have back support, my neck and shoulder hurt so bad that I don’t care whassup with my arm numbness, know what I’m saying’? No, I guess not.
The first time my sister pushed me around in a transport chair; far out man. The family was going to Elitch’s and I was so damn tired of not being able to join them because there was no way I could be upright around an amusement park all day. My sister said it aloud but I openly admitted, it had come to my mind at points … why not buy a wheelchair? That way I can go with them and keep my upper body at rest all day. Oops hold on, I’m choking on, cough cough, ugh, wait – no worries, that’s just my pride. Today I have two assistive chairs, Stella (family operated) and Charlie (motor operated). I go to Amusement Parks, Zoos, even shopping malls. I go almost everywhere I used to go, just not always on foot anymore. If I could afford it (or if I ever meet a handsome single engineer) I would freaking love to have a wheelchair that is operated by your FEET.
Throughout all of this spontaneous nerve related crap, I was experiencing a nuance of other random (yet relevant) shit. For example, extreme short term memory loss. Embarrassingly enough, I’m talking about getting lost for an hour trying to find the Walmart that’s less than 2 miles from home, for example. I’m talking about losing EVERYTHING minutes after being in my hands and then immediately, losing my mind upon realizing as much. I’m talking walking out of my room and up the stairs to get something and forgetting what it is – time and time and time again, every minute of every day was blurring. I was getting sick, all the time, no matter what I did to stay well. I was 93 pounds, I felt prepubescent, my skin was equally wrecked. I was getting ear infections without even having a cold. I woke up in the middle of the night in severe eye pain that landed me in the ER on morphine. Eye pain, people.
In July of 2014, I was diagnosed with Late Stage Lyme Disease, more commonly referred to as Chronic Lyme Disease (you can read way more about this on my Apropos page) but in essence, I was very sick and the disease had in fact, gone to my brain. There is no cure for Lyme Disease once it hits this stage, but they may be able to deduce it with long-term (approximately 14 months or more) antibiotic therapy. After having done so much research on antibiotics while I was sick, it was devastating to know that using those fucking toxins was the only answer but at that point I would do ANYthing. I began with natural remedies the first few months, followed by months of antibiotic therapy. Without getting into details, it was awful, more awful than being sick. However, I did get my normal combination vs. surface of Mars, skin, back and I can not tell you the last time I had a head cold, win win. Unfortunately, my neurological symptoms were not improved at all and the list is quite long but I am managing, toxin free at this point.
In my previous life, I WAS THE SHIT. Yep, I said it, but rest assured you would have undoubtedly wanted to be my friend 🙂 On a team of 88 salespeople, my name appeared on line #3. I had just received a couple of awards; Presidents Club, Million Dollar Club, and Sales Achievement. After 9 years with the same company, it was the first time I stood proudly amongst winners of like awards. The Universe only knows how many hours I put into my career, how much blood, sweat and tears were lost worrying over where the next deal would come from. Day after day, month after month, for 9 years. This was after being in sales for all of my adult life and I have (proudly) peddled everything from garbage removal and dance lessons to perfume and cable television. My home was a cozy little loft in downtown Seattle, 3 blocks from the waterfront. I shopped at the fish market and stopped at Macy’s on my way home (walking) from work about 3 times per week. I had my groceries delivered by Amazon or walked to Whole Foods and went to Happy Hour or had Edward’s chocolate mousse pie for weekday dinners. My dog and I walked miles upon miles. We spent weekends on trails or at dog parks. I took some of my vacation time in Colorado, visiting about 6 times per year, but the majority of it was dedicated to outdoor adventures along the coast; just Ninook and I. We camped (old school, tent style) where we could but when only a Hotel would do, we did it right.
Who am I now? Most days I can’t even begin to answer that question. I am a 40 year old SWF (never wed, never had children) who recently moved back into her parents house, back into her old bedroom, because that is what I needed to do to make it through. I am someone who does whatever she can to wake up invigorated (a stretch) in the morning and fall asleep happily (stretchier) at night. Any further commentary about me will be fluff or fail, however, I AM also someone who LIVES to do for others; I joke that it is always how I gladly go broke and currently my courage cards are the only way I can “virtually” force your caring hands so please, I beg of you, please rescue forward today.
If there is one thing I am absolutely sure of it is that the person who receives your courage card needs it more than you need that five minutes. Once you’re done with it, if you feel like sending me a foot (cycle / pedal /whatever) operated wheelchair; that would be super fantastic times infinity. You can even pick the color. Maybe take it for a (quick) spin (begging hands)? But seriously, thank you … thank you … THANK you! (You know what you did)