dermatomyositis

From Wikipedia: http://en.wikipedia.org/wiki/Dermatomyositis

Dermatomyositis (DM) is a connective-tissue disease related to polymyositis (PM) that is characterized by inflammation of the muscles and the skin. While DM most frequently affects the skin and muscles, it is a systemic disorder that may also affect the joints, the esophagus, the lungs, and, less commonly, the heart.

I can't even pronounce it yet.
From Websters: http://www.merriam-webster.com/dictionary/dermatomyositis

der·ma·to·my·o·si·tis
dər-mə-tō-ˌmī-ə-ˈsī-təs

 So far, I only have the skin part of this disease. My blood tests have all come back clear except for the ANA test, which came back positive, which is why the dermatologist diagnosed me with dermatomyositis. There! I spelled it out myself instead of cut/paste from Google. (little win)

So why do I feel I have to keep my dermatologist under control? Because he was so fricking excited to see the rash I came in with. It is apparently his area of interest, so he geeked out on me. LARGE LONG words, lots of hand flailing, talking 1000rpm. He scared me. I wasn't sure if I was going to die, or if he thought this was a cool thing to have. It wasn't until I started crying (lots of that these days) while he took the skin biopsies that he realized that I was scared.

After that, he was great. Spoke to me in common terms, gave me a printed list of to do items, told me that we caught this early and he didn't expect this to become too big of a problem. He sent me home with a prescription for an ointment (clobetasol propionate) two handfuls of sunblock and did the parental finger pointing when he said to use all of it. "Reapply!" and to wear a broad brimmed hat.

At my second visit to get the results of the bloodtests and the biopsy, he said he wasn't happy with how long it was taking for the ointment to work. He prescribed a drug then and set me up with another list of appointments to make with a rhumatologist (for testing muscles) and an optimologist (for a baseline test for my eyes). That last part scared me again. They drug he prescribed is hydroxychloroquine (Plaquenil). It actually messes with my DNA to hinder it from reacting to UV rays.

My DNA?!?!?

Plus it could cause liver inflammation and impact my eyesight - hence the baseline eye exam. Yay me!

He promises that the effects are reversible after stopping the medication....How long am I going to be on this again?!?!

So now I'm looking into naturopaths to help me make it so this mutant-causing (paging Dr. Xavier) drug become unnecessary...I hope...

to do:

1. start taking Plaquenil (done)
2. make appointment with rhumatology (done. April 22nd)
3. make appointment with eye doctor (done! going in on April 5th!)