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Wednesday, January 8, 2014

new year spoonie assessment

Last winter didn't look terribly hopeful but it was a huge step up for me from winters before. This winter is amazingly way better than so many years past. What changed this year? Here you go, have a power point review.



The biggest thing was finding out I'm allergic to acetaminophen. I've been living on benadryl for so long, dealing with so many other reactions, never occurred to me I might be having a continual reaction all this time underneath everything else. I'm already banned from ibuprofen, so there's not a lot I can do any more about home pain treatment. Requires being smarter than ever before, avoiding impending consequences, not being stupid about overdoing and overextending myself. Pills are a quick fix anyway, not a cure that keeps you from crashing sooner or later.


The next huge thing was ASTYM, all the new rage in fibromyalgia treatment, based on postitive results with athletes. I spent 4 months in grueling ASTYM therapy, deep soft tissue massage for the purpose of breaking up hardened scar tissues for better blood flow and muscle control. That alone has dropped my pain level enough to exist without daily pain meds, hooray! I still hurt, and the pain levels can still shoot pretty high, but I've been given 'permission' now to do what I always found instinctual- dig deep where it hurts. Pressure points are key, and then stretching and exercise are crucial.


The biggest difference from last winter to this that I'm noticing is a serious lack of migraines. I spent last winter with the shades drawn and barely able to cognitively function, much less read. This winter I'm doing just about anything I want with minimal occipital nerve problems and greatly reduced nerve reverb overall up and down my spine. Again, still have some interesting pain, just way easier to live with. A neurologist has finally documented the body-wide dysesthenia I developed last winter as healing from an ancient car accident. He said nerves can take years to heal, especially after being thrown violently out of a car, and being very ill with lupus and diabetes and several rough viruses along the way stopped the healing process for awhile. I'm still avoiding alcohol, don't smoke, eating healthy, trying to get plenty of rest, staying well hydrated, exercising regularly, and not going over my fatigue limitations. I am trying to keep up higher protein and healthy fats in my diet since protein builds tissues and fats are vital for nerve health.


I am currently having a stiff knee/leg from carrying a 15 pound baby around while she was teething, but nothing swelling up so it's most likely frogged muscles from muscle strain. I see a chiropractor once a month and take zyrtec daily to help me sleep on the advice of two different doctors. The zyrtec also helps my body stay calm when it wants to over react. An allergist diagnosed me with autoimmune reaction disorder, says it's common for people like me to just start hyper reacting to everything, so there you go.

If you're a spoonie running into this, I hope it helps. Most insurance and medicare will pay for the ASTYM therapy, but you have to ask your doctor for the referral. Good luck with your stuff.