Part 3: doctors run tests and discover that lol, i actually have something else wrong with me: an autoimmune disease. But it still doesn’t explain my shitty-ass bones.
Tests Are Fun. Just Kidding.
Doctors were baffled at my DEXA scan results. They ran a lot of tests to find out if I might be secretly ill, because it’s just not normal for someone my age to have such “old” bones. I went through thyroid and parathyroid tests, but nothing was wrong. My kidneys and liver were tested, but nothing was found there, either. (It was a test where I had to pee into a jug for 24 hours. That was fun to deliver to the lab.) Blood tests showed I had a vitamin D deficiency. Since calcium can’t really be absorbed without adequate vitamin D, the docs figured that was it. I begged for a Celiac panel to rule that out. It came back negative. My back was killing me and I was exhausted at the end of every workday. I couldn’t concentrate on anything. I went to a mental health specialist to find out if I had ADD. Nothing ever explained what was going on with me. I tried to work out and do yoga and walk, but every time I did yoga my joints snapped so much my boyfriend asked if I was breaking myself. On top of that, my periods had gotten even worse and my headaches were appearing regularly. I couldn’t even go into work when I had my period. Thank GOD my manager understood. She has been so kind to me throughout everything. I still work for her and appreciate all she’s done for me.
Anyway, I was desperate, so I got an IUD to try to quell some of the horrific depression, cramps, and bleeding. I’ve had more issues with the IUD than I should have–SURPRISE, cramps and 21-day spotting cycles–but I’m not bleeding so much I can’t go anywhere. Except for one time. That was scary. But overall, it was an improvement, I suppose.
I lost my health insurance when I switched jobs in August 2013. My sister left to pursue her PhD and my boyfriend and I made the decision to move to where my family lives to save money and talk to more doctors. We were sad, in a way, but I couldn’t tolerate what was happening anymore. I needed to talk to someone who knew more about bones. Once we got back, I went in to talk to a general practitioner and she ran some blood tests.
Surprise! Something Else is Wrong.
I wasn’t expecting to find anything different than the tests in California had shown. But something came back strange. ANA with Reflex was the name, and when I looked it up, I was floored. Associated with autoimmune diseases such as Lupus, Sjogren’s Syndrome, Systemic Sclerosis, and Polymyositis, this test wasn’t anything to ignore. My doctor ordered more tests and I watched as the results flooded in. Weird tests for double-stranded DNA, and antibody after antibody that I had to Google to understand. All of these results were coming in on a night when I was headed to a friend’s house. I had been wearing a hat and wanted to fix my hair once I got there. When I went to the bathroom to fix it, I noticed a small bald spot on the top of my head, just under the size of a dime. I panicked. I knew it was a symptom of many autoimmune diseases–hell, autoimmune alopecia (alopecia areata) is a disease unto itself. I felt feverish and got tired well before I normally did. I felt like I was falling apart. Thus began the exhausting 6 weeks of December through mid-January.
Then the bone thing just faded into the background.
The test results finally came back in a few days later. My doctor emailed me saying that my antibodies for CREST syndrome (also called scleroderma or systemic sclerosis) came back positive. So my results were, in her words, “indicative of systemic sclerosis.” I googled it. If you do not know what scleroderma/systemic sclerosis is, it is a horrifying debilitating, progressive, and sometimes fatal disease that robs you of your self-confidence and independence. I am sorry if anyone reading this has it. There are ways to fight it, there are ways to get support and maintain your confidence and independence, but let’s not kid ourselves–this disease is real, raw, and goddammit, why does it even exist.
I cried. A lot. Like, nervous breakdown sobbing. I am an artist, a writer, and I enjoyed yoga and simple things–you know, like brushing my teeth and fixing my hair–without worrying about my hands balling into inflexible claws. I didn’t want my face to become so tight that I couldn’t smile like I used to. I didn’t want to get gastric reflux so bad that I had to elevate my bed or risk barfing all the time. I didn’t want to get pulmonary hypertension. Or have my fingers’ circulation get cut off so badly that I got ulcers or–God forbid–had to have them amputated because of gangrene. THIS DISEASE IS HORRIBLE, IN OTHER WORDS.
What the fuck was wrong with me? Why was this happening to me? Haven’t I gone through enough in my life? Illness has haunted me like a fucking poltergeist since childhood. Two of my sisters died from a genetic disease. My grandmother has Parkinson’s and I am watching her slowly become so disabled she can no longer care for herself. My relatives on both sides of the family suffered from “rheumatism” or what’s now known as RA/rheumatoid arthritis, which is in the same family as lupus, scleroderma, polymyositis, and Sjogren’s.
I set up an appointment with a rheumatologist. I wrote down all my symptoms. I did research. I spent hours documenting things and culling through my memories of pain and bizarre symptoms. I realized I had much more in common with Lupus and Sjogren’s than scleroderma, but it’s possible my disease was caught in its infancy. I saw that endometriosis is very common in people with autoimmune disease. Nothing about bones, though. So I focused on the immediate problem and brought a huge file to my doctor.
Well, let’s just say he sucked and didn’t really care why I was there. He pinched my skin and said “no, you don’t have scleroderma.” Then he wrinkled his nose and was like, “Actually your skin is very soft, like REALLY soft, and quite flexible.” (This, I would find out later, is a really important symptom, and he as a rheumatologist should have seen something here. He of course, did not.) I was floored at how I was treated. He was more concerned with my bones than anything else, and ordered a bunch of tests (which I’d already had done) for me. He even insinuated that my pain was in my head and then gave me the diagnosis of fibromyalgia.
I believe fibro is real. I do. But I do not have it. It is a bullshit diagnosis for someone with clear connective tissue disease and pain associated with it. He did an xray to check for pulmonary hypertension and interstitial lung disease (associated with scleroderma) and sent me on my way after offering me painkillers, which I refused.