~secret code stuff~

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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Saturday, September 20, 2014

a plan that works- spoonie survivalist

Yowza, back to start another round of physical therapy yesterday. Ideally, lower back core strength would be pool work, but being around the pool sets off asthma (chemicals?) and winds up counterproductive. I started out that way in 2008 and loved it, but breathing kind of takes precedence.

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So yesterday it was back to balance workouts, and then deep tissue ASTYM, which I think actually gets more work done in half the time anyway because it pinpoints and concentrates on problem areas instead of continuing to use general overcompensation while strength training. I work with weights, balls, stretchy bands, and sometimes foam pads that force me to fine tune balance even more.

I am usually the youngest person I see in physical therapy, unless someone else has come in for athletic or accident related injury. Most of the work is older people trying to regain mobility and lower their pain levels. Since I've already been through nearly complete immobility and screaming high pain levels, I have a lot of empathy for them being old on top of it.

I was told by the very first doctor I saw in my mid-20's that I would be living in a nursing home by the time I was 40. Back then, before 'fibrositis' was a thing (now fibromyalgia), it wasn't that uncommon for people to wind up in severe contractures as they grew older, to the point of great suffering and losing ability to care for themselves. One of the focuses we learned in nursing school was how to care plan around patients with contractures. I saw very clearly where I was headed if I didn't get a handle on living with severe fibromyalgia complicated with autoimmune flare ups. Having diabetes with it makes it monumentally worse because ketones further slow down vital nutrient flow through the muscles. I watched my mother disintegrate into 'frozen shoulders' and severe physical and cognitive deficits before she finally died in a nursing home. If everything I'm going through is genetically inclined, I know exactly how it's all going to end.

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But not if I can help it! There is so much new knowledge nowadays. In 2008 I made the decision to taper off medications that didn't improve my quality of life in either function or pain control, and now I'm nearly free of meds. I put together a care team of my own that included my regular doctor (who refers me as needed to pulmonologist, rheumatologist, cardioloist, ENT, allergist, etc), psychologist, and chiropractor. I coordinated all this with my endocrinologist and gynocologist. It helps being in a system like Mercy that is software integrating all my medical info, but I started this self integration before they had that technology in place. It takes some effort and focus, but taking that first step to become my own health care advocate was the beginning of me changing my life. I know a lot of people who still have unsynchronized medical charts between widely disparate clinics and doctor groups, and I can see how this hampers the help they hope to get, especially if they're not very good yet at communicating to every doctor they see. My psychologist helped me learn to communicate my needs and goals to my doctors, and that made a lot of difference.

Disability is an unfortunate part of my life, and I resisted for years. I hid my problems as best I could until I quite literally could no longer function and started making big mistakes at work. It felt like my body and mind were closing down and I was trapped inside, and everything got really hard. It was hard to move around, hard to interact in social settings, hard to think. I even discussed becoming a nondriver with my doctor. My driving got pretty scary.

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Fortunately, I discovered that Medicare has strong physical therapy support and encourages people to use their yearly programs that are designed to channel the patient's needs through one-on-one assessment and training. I couldn't see how this could help at first, but a new wave has been sweeping the country- ASTYM is all the rage now. I am one of the first in my area to go through comprehensive ASTYM therapy along with core strength training with several different therapists because I'm stubborn and want to get healthy. Because I accept that 1- I must work for this, 2- pain is ok and not to be avoided (many people stop because the pain doesn't stop right away), and 3- it really is up to ME being persistent to properly heal, I have regained not only a world of mobility I had lost for years, but also the strength and endurance to keep moving. I am able to do things again that I held no hope for in my future, and much of it with drastically reduced pain levels.

I still have rough days, weeks, even months, but I know now that I don't have to backslide to darkness and despair. It's up to me to be a vital person. It's my choice to work hard so that I can continue to be useful in this life. It took quite a lot of grit with no promise to cling to when I first started out. It's been 6 years since I began my first physical therapy. I've been able to avoid several spinal surgeries, many cortisone shots, and have probably reduced my fall risk by at least 80%. I'm not pain free and probably never will be, and every time I take a break from physical therapy the old stuff tries to creep back up on me. This isn't a cure. But it has become a lifestyle, and I'm grateful that I stuck through it this long because I'm reaching a place where life feels better, I feel happier, and I actually have hope for my future now.

I'm writing all this down because I remember how I used to search through the night for other people like me- how does one survive? How does one get through this hard stuff? How does one hang on when everything utterly sucks and life looks so sad? Especially in the wee hours of the night when there is no one to talk to.

I am drawing a road map. I'm finding my way through this jungle, and one day I'm going to make it easy for all of us to follow the map. In the meantime, this is me checking in on another prednisone taper and another round of physical therapy.