Fake me + Real me updates

In “real me” world, I had a big doctor’s appointment earlier in the week, the sort where I got to wear one of those barebacked robes that shows off my butt while a couple doctors prodded and examined me in various ways. It was good because it escalated me further up the various “expert” or “specialist” ladders — exactly the sort of people I need to be talking to in the hope that someone will come up with some long-shot therapy or treatment that helps treat the myopathy, or at least reduces the pain. Didn’t go that way though, which I’m used to as it never does. Every doctor that gets added to the mix simply confirms the diagnosis, agrees that it can’t be treated (but that they’ll “think about it” and consider who else we can discuss it with), and often throws another problem into the mix as well. This week it we first confirmed the progression of the nerve damage from my “tumor” (a benign bone growth the size of a tangerine, not cancerous so tumor isn’t really the right word I think) biopsy and removal, as that neuropathy came back after changing pain treatments a month or two ago, and that I have abnormal reflex response in my legs. None of that is particularly surprising to me, but I was surprised to find out that my spinal cord is degenerating, which is causing additional problems in mobility and generally being able to control my body in addition to the muscle decay itself. I am guessing that this nerve degeneration is part of what’s causing complications with my heart and breathing.

I hope I’ll have the interview book online shortly, as I already mentioned, but haven’t done as much on the memoirs as I’d like… I’m just having too much difficulty with writing. Writing this entry is a major struggle, and it’s just a simple “status update” rather than a reflection on my experiences that also needs to be engaging and enjoyable to read. So to keep myself going and not just doing nothing I’ve been making little sculptural “doodles”. I made a messed-up looking avatar (that’s the “fake me” world I guess), capped off (“brained off”) one of my old clay ring masters, and made a silly little fridge magnet face, among other things that aren’t pictured here… Zoom if you’d like.

3 Comments

  1. HJP wrote:

    I don’t know if it would help, as I don’t know if talking would be a strain for you either, but have you considered Dragon? My girl uses it as she types badly due to dyslexia, I prefer nonverbal communication so I haven’t messed with it. She really likes it though – here’s a link http://www.nuance.com/dragon/index.htm

    Friday, December 14, 2012 at 11:41 pm | Permalink
  2. Halcyon wrote:

    I’m sorry that you are having continued frustrating experiences with the medical docs. As a long shot, have you tried finding/initiating communication with scientists that might be researching your condition? It may be possible that there is an experimental treatment that hasn’t quite made its’ way down the pipeline to practicing physicians yet. Researchers are always on the frontlines before clinicians. I hope you can locate someone that can provide some kind of relief.

    Saturday, December 15, 2012 at 11:49 pm | Permalink
  3. Shannon wrote:

    Halcyon, I think that’s probably good advice… But I would have to find someone in the Toronto region, and so far that’s been a bust, although my doctor found a lead on someone in Hamilton, which is about an hour away, so fingers crossed.

    Sunday, December 23, 2012 at 4:17 pm | Permalink
Wow Shannon, that's really annoying! What is it, 1997 on Geocities? Retroweb is NOT cool!

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