I know I’ve been kind of AWOL, so really this is just an “I’m still alive” post… I’ve been with doctors more than I’d like on subjects that I’d rather not be talking about (I don’t mean here, I mean to said medical professionals) and leaving the hospital with difficulty being able to hold onto the hope that anything useful is going on. They wanted me to consider talking to a therapist but to be honest, being forced to talk about how it feels to have an extremely painful and physically debilitating disease that has no cure or treatment makes me feel like crap for the next week so I prefer not to do it. Anyway, if I want to have some therapeutic release of what I’m feeling, I’m much more inclined to do it here than in some social worker stranger’s office… but all in all, I’d rather keep any sadness walled off and buried away. Talking about it only pushes it to the foreground, and since it can’t be changed and is an immutable reality, occasionally feeling down about it is a completely normal response that I don’t feel I need to confront.
Tomorrow I’m at the hospital to potentially get physical therapy started, although for now I’m expecting it to go nowhere. The reason for my pessimism is my exercise has to balance on a fine line as too much damages the muscle and accelerates the myopathy, and too little causes atrophy. Thus I need to find someone with specific understanding and given the rarity of this condition I’m not getting my hopes up. I mean, I do hope that I am surprised because it turns out well, but I’ve spent too much time having my hopes dashed to put myself through that again. I am hoping though that at least it may get me one step closer to someone who can help.
Even though I’ve had very little time to work, I have found a few moments to work on my first action figure or poseable toy in which the limbs and head are movable. I have run out of clay though so I have to pick some up before I go any farther, so I don’t have anything terribly interesting to show yet. I also picked up a dozen ultra-cheap 8gb USB drives that I’m going to re-skin with new cases of my own design.
In the good news department Caitlin got me a supercool pair of Guns’n'Roses underwear.
9 Comments
I always feel better when I’m wearing supercool underwear! I sure hope the physical therapy helps…I recently had some for a shoulder problem, and it really worked beautifully!
thank you for sharing the pain and joy of living
even when you get it wrong you get it right
as in the sorrow and joy you are esp to those who love you
that sculpt looks awesome!
i hope therapy goes great for you and life overcomes the pain.
The face looks like a lotus flower seed pod!
that is an interesting toy!
https://www.reddit.com/r/IAmA/comments/ft35r/i_suffer_from_a_chronic_pain_disease_ehlersdanlos/
I thought you’d like this.
https://likecool.com/Andrew_Myers–Projects–Gear.html
Would testosterone and/or steroids help? It seems like if nothing else it’d keep the muscles from atrophying.
Greg, I wondered the same thing but they tell me it might have the opposite effect and could accelerate the problems, more than any gains at least.
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