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Okay, life. Or: being human is weird.
ddr_ho
Hey, guess what? I have a rare genetic disease. Life gets more and more interesting, doesn't it?

I was at my rheumatologist visit, and we were talking about swelling and what I should look for. (I always thought it would be puffy, but then I saw some pictures of just redness, and was confused. My hands do get red sometimes.) So he was showing me where to feel around the joints, then said, "Oh, look, you have a lot of hypermobility there."

"Yeah," I said, because it is just a thing I've always had. It's that weird thing I'd do to freak out friends. My fingers bend backwards much more than is normal, and I can make them take a funny shape. My mom has it, too, and we just called it being double-jointed.

So he asked me about my elbows and a few other things, then said it was something something type III and told me not to jump out of planes or do extreme sports. (Paraphrasing.)

I didn't think much of it, then was bored on the bus yesterday and looked it up. And completely freaked out. It explains so much!

Ehlers-Danlos Type III
is a condition that effects all the soft tissues, so it affects a lot of the body systems. I thought, oh, is that why I was always twisting and spraining my ankles before I did yoga, and it's so easy to end up with a hurt knee just by walking or getting into bed the wrong way?

And it effects the eyes, stomach, musculoskeletal system, psychological disorders... It explains so much of what I experienced, and it explains even more about my mother. I have been feeling kind of guilty, because I really did think she was a hypochondriac for the last 20 years. (As one of my friends pointed out, she could still be acting like a hypochondriac even if the experience was real, just as someone who is paranoid may actually have people after them.)

It says people, especially women, who have this condition may be diagnosed with chronic fatigue syndrome (mom, in the 90s), hypochondriosis (I read a whole book about hypochondria after a friend said that's what my mom has), fibromyalgia (my aunt, though this is an actual underlying disease associated with type III, not a misdiagnosis).

So this has all kind of rocked my world, and it's all I can do not to write to my rheum. and say, "Um, are you sure I have RA? Because a lot of these symptoms sound similar."

Fortunately, we just had the conversation about which of my symptoms correlate very strongly with RA (most especially, feeling better the more active I am, within reason), and how my treatment is working. He also sent me off after this revelation without any indication it changed things drastically in his diagnosis, so I guess I can just try to process it and let it be.

I mean, it doesn't really change things. It's just weird to realize you've had a strange disease your whole life that makes sense of you and your whole messed up family (on my grandfather's side).

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