EA, being "friends" with OW, and Boundaries Part 2

[NikB]

Hi Ellie - thanks for asking! I only get into the details if someone asks because unless you're wearing the doc hat it can be pretty boring.

The muscle disease was an autoimmune one - juvenile dermatomyositis. It was active from ages 10 to 13 or 14 (I forget which now), but it was a severe case and the muscle damage is permanent. I finally got out of the wheelchair around age 16-17 and got around pretty good by age 18. Before the leg break, I was able to do about 2 miles on the treadmill, jog in place for maybe 30 seconds, and climb stairs with a rail - that's as close to normal as I got. Basically I have a lot less muscle cells than your average person so I can rebuild strength, but it's harder for me than most because I have less muscle to start with. I don't think I could ever get to "normal" strength, although I don't really know (I was 9 last time I knew what normal felt like, so I'm not sure I'd know when I got to "normal" anwyay if I did).

The osteoporosis is tied in directly to the muscle disease. The primary treatment for the dermatomyositis was steroids - and because my case was so severe, they ended up doing experimental super high "pulse" doses of Prednisone, along with a whole bunch of other drugs. I'd have died without it so I'm not criticizing the docs, but one side effect of the steroids is osteoporosis. The thing that really sucks is, they WERE doing bone density tests on me for years. My last one was around age 20 or so, and my bone density was back to normal. Since I'd been off the steroids for years and my bones were back to normal, I thought I was good to go and I never knew it was something I should continue to watch. Apparently, for some reason, my bones are still vulnerable to losing density very quickly. I was 31 when they were so bad my leg broke easily.

For the treatment - the doc's giving me Fosamax to rebuild the bone density. I also take a calcium supplement, and I've recently added the treadmill back to my daily routine. Here's hoping this combo helps.

I don't understand what caused the osteoporosis to return but the docs seem to think it's related to the steroids as a kid. Does that make sense or seem right to you?

Thanks for your comments on the skiing. I felt like it would be pretty safe doing it with the adaptive ski school (no way I'd just go to normal ski class!), but I dunno... still thinking on that one.