So you might have noticed a post a bit ago about how I got permission from the Scleroderma Foundation to use them in my next book. It’s not a terribly common illness. About 300,000 American’s have it. Seriously not a large number when you think about it. There are several forms of Scleroderma it’s first broken down into Localized and Systematic after that it’s broken down into Morphea, Linear, limited and diffused. Depending on the type you have depends on the symptoms. Most forms of scleroderma are ‘cosmetic’ or ‘minor’. It’s unsightly and causes discomfort in some manner or another but generally not threatening. The biggest threat is when it attacks your internal organs. If it affects your esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs there can be some serious problems.
My character Vella has a form of Linear Scleroderma and it’s mainly cosmetic in such cases.
That begs the question though, if it’s not widely known and not many people are effected how did I find it?
For many years now (about a decade) I’ve suffered from Raynaud Phenomenon. This past Christmas I noticed it was getting worse. I seemed to be constantly freezing. Concerned I went to the doctor in February who ran a battery of tests. In the end I was told to see a rheumatologist. More blood work was drawn and I was told I tested a false positive for 3 autoimmune diseases. I needed to come back in three months for more lab work.
Unconcerned I went on my merry way. My mother has tested positive for Lupus for over a decade and it never formed.
In April I awoke barely able to move.
Forcing myself up I started my day homeschooling my son and obsessively checking my IM for my husband. Only two months left for him to get home from Afghanistan! I went back to bed since I hurt so badly. After spending the weekend there not willing to deal with the pain I forced myself to get out and about during the week. I convinced myself it was old injuries playing up. My right knee hurt from an exercising accident, my shoulders and elbows from my upper trapizious syndrome, my left knee from favoring my right, my right wrist from tendonitis, my hips from a twisted pelvis. I could explain it all away.
Two weeks later after much threatening from my friend I went to the doctor. My friend seemed to think it was rather more serious than myself since I had to resort to using things to prop me up as I walked; handrails, counters, shopping carts. My doctor told me she believed my autoimmune diseases were now active.
Back to the rheumatologist I went. I was promptly retested and told it was nothing, but come back in three months. Needless to say I went back to my doctor. She explained that exercise was about it at this point until I warranted meds especially since I react violently to many medications.
So another appointment with my rheumatologist and I was finally able to pin him down on what I tested positive for: systematic scleroderma, polymyositis and mixed connective tissue disease. Lovely, right? I had to look all three up.
My rheumatologist is insisting I have fibromyalgia. A diagnosis I intend to fight once we PCS. Once diagnosed with fibromyalgia doctors have a habit of disregarding you for anything else. Very dangerous if my scleroderma ever does become active. While it’s a popular ‘disease’ to have right now it’s also what doctors refer to as a ‘junk diagnosis’. Having fibroyalgia can often mean ‘we don’t know why you’re in pain so we’ll label it’. I’d rather have a doctor tell me they don’t know what’s making me hurt but will keep looking than tell me I have it.
Eight months after all this started I’ve learned a few things. Exercise helps, arthritis is like a rusty door; keep moving it and it’ll keep moving, leave it alone long enough and it’ll take a damn of a lot of effort to move it again. A cane is handy for my bad days. Never be ashamed. You have what you have. Do I wear fingerless gloves driving? Yup, keeps them toasty while the air is on. Do I obsessively knit/crochet? Yup, helps the ache in my fingers which I have everyday no matter what. The other pains come and go.
I highly doubt that the pic below is caused by fibromyalgia. Last I checked it doesn’t cause your fingers to change colors or your knuckles to twist. When I pointed it out to my rheumatologist he had the audacity to tell me it was ‘part of getting older’. Since when is 32 old?
When my husband finally came home from deployment I explained yet again what was going on and that it could get worse. In his oh so loving way he explained that there was nothing wrong I was just turning into a Hagraven. (for those of you who don’t know it’s a creature from the game Skyrim the pic on right is from a screenshot I chopped to show it’s hand 😉