- All of my hair fell suddenly fell out. I've never had a head of hair due to alopecia, but I have mostly had baby-quality hair that came and went, as well as body hair. It all came out suddenly this summer. Nose hairs, the little hairs on your face, everything.
- I got face markings: a rash that went from my forehead down the sides of my face and onto my neck/chest. I also have redness and red spots on my knuckles.
- My voice got hoarse.
- I got overuse injuries that wouldn't heal: a shin splint, my inflamed IT band, and one thing after another. My body couldn't heal itself from the everyday wear and tears.
- I had an overwhelming sense of unwellness. I didn't feel like myself, didn't have my normal energies or interests, and in general, didn't enjoy being inside my own skin.
Monday, February 15, 2016
I am back to life. Back to running, back to energy, back to myself. I had a flare in the 2nd half of 2015. While it wasn't physically debilitating, it presented some interesting symptoms:
Somewhere around Christmas, I noticed that my face markings faded just a bit, and the body aches/pains subsided. I've got the faintest traces of peach fuzz on my face when I do an extreme close-up look in the mirror. I still have the face/neck/chest markings and knuckle rash, however, as well as a little of the voice hoarseness. Fortunately, this is cosmetic. Most importantly, I feel like myself has returned. I feel well and happy, which is a huge relief. I hope it sticks around.
Here's what I think happened: Miraculously, I never suffered muscle weakness. Instead, I think that the Polymyositis turned into Dermatomyositis. What I felt was a flurry of increased autoimmune activity while that was going on. I'm just glad it loosened its grip for the time being.
Although a blow came today with a call from the new rheumatologist's office. I had been struggling with my current rheumatologist, who seemed to have some trouble helping me navigate this flare. I experienced quite a bit of frustration with the way that it was handled. It also turns out that he is dropping out of my insurance network, so the breakup had to happen anyway. There are 4 rheumatologists in a 2-county area here. I've already burned through one. I went to the next 2, who are in the same clinic. After establishing my primary care physician within their network, I learn that they have a 2 year waiting list to get an appointment. Uh. What? I am blown away. 1) I am scared. What are we supposed to do in the meantime? What if I get sick again? I don't know what to do next. I can't keep navigating a system like this. 2) Why in the hell couldn't they have told me up front that it wasn't going to be an option? I have been trying to switch rheumatologists for 10 months now. The first attempt took 6 months, and I got a straight-up rejection. Not taking my case. This last attempt chewed up another 3. More pointless co-pays that are going to result in rejection.
And once again, I am lost at sea. I feel absolutely helpless.
Posted by KH at Monday, February 15, 2016