Living with an Undiagnosed Autoimmune Disease

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via Unsplash

In 2007, I began experiencing symptoms of what would eventually be given dozens of incorrect diagnoses: heart attack or stroke, carpal tunnel, maybe something neurological, Thoracic Outlet Syndrome, Fibromyalgia, maybe Lupus, maybe Lyme Disease, maybe Rheumatoid Arthritis, “maybe you shoulder see a psychiatrist,” “I don’t know,” “I can’t help you anymore,” definitely something autoimmune, enthesitis-related arthritis, Reactive Arthritis, “could still be Rheumatoid Arthritis,” “it’s just Fibromyalgia; you should be grateful,” and finally back to “it might be Lupus” again. It’s been a long, frustrating road and, though I suspect Lupus might be the culprit, I still feel miles away from relief. My life is also forever changed.

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via GIPHY

Most recently, my rheumatologist that I’d been seeing for years suddenly left the practice and moved to Florida. A new rheumatologist replaced her, a man who was very nice and very gentle, but did not really listen to me. He initially brushed me off and insisted I “just” have Fibromyalgia—until my latest round of labs came back and showed a very high anti-dsDNA, which is a glaring red flag for Lupus. I’m in the process of convincing him that you don’t need a positive ANA for a Lupus diagnosis and treatment; there are two firm camps of rheumatologists, and mine is of the “labs must show X, Y, and Z for a diagnosis.”

But to be completely honest, I’m tired. I’ve been sick for nearly a decade now and I’m really losing patience. Maybe that makes me whiny and entitled, but #sorrynotsorry. I’m confident that anyone who thinks I’m just exaggerating wouldn’t be able to exist in my shoes for a day.

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via GIPHY

Before my diagnosis, I was a web designer and social media consultant; I co-owned a web design and marketing business and worked with non-profits and small businesses in my community. I was a code monkey who longed to spend my days writing instead, but I had a comfortable income. Between the economy, some partnership disagreements, and my illness, I eventually left the industry and went back to my bitter enemy, retail.

I worked at Kohl’s and then T.J. Maxx for years, with an office assistant job in between. I also embarked on my publishing career. Although I actually really liked my jobs, it became more and more clear that my body couldn’t handle the demands of the workforce. I had to keep changing jobs to accommodate my aching joints and flareups, and even lost a couple jobs due to my illness and employers who were unwilling to work with me. (I’m told now that I actually could’ve sued both these places, but at the time I didn’t know better. I was, however, awarded unemployment from the office job, so that was a small victory.) In December 2014, with my husband’s and family’s support, I left the workforce permanently.

I look at my illness as a blessing in disguise—for the most part, anyway. If I hadn’t gotten sick, I would’ve continued spending 12+ hours a day writing code rather than writing fiction. I never would’ve found my voice and followed my dreams of becoming a published author. So for that, I’m extremely grateful.

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via GIPHY

Still, I’ve lost much. My independence, for example. I used to move around entire rooms of furniture singlehandedly—and back then I weighed 115 lb. soaking wet. At my best, I made almost $30K a year as a web designer. I never got tired just from cleaning half the bathroom, and I showered daily without blinking an eye.

But, my illness brought my husband and I back together. On the day my symptoms came roaring in, Mike and I had been broken up for about two months. We probably would’ve got back together eventually, but we weren’t really talking at the time. He was hurting because he thought he did the right thing by letting me go, and I was hurting because I couldn’t understand why he’d broken up with me. On that day, though, he heard through the Toys R Us grapevine that I was leaving early because my arm was numb and painful—figure that out, because I still can’t—and rushed to my side.

I can still remember exactly how it felt to be sitting outside next to him, waiting for my parents to pick me up. Mike was like a protector, following me around the store, trying to help me in whatever way he could. He risked getting in trouble by taking an unapproved break and sitting outside with me until my parents got there. And then he called me for the first time in months to see how I was doing.

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via GIPHY

Yes. Yes we did.

Since that terrifying day, when my pediatrician—who I was still seeing even though I was 18—was concerned I might be having a heart attack or stroke—Mike has never left my side. We worked out our problems and our love grew stronger. The guy helps me get dressed and walk to the bathroom when I can’t do it on my own. He drives me to appointments when I’m too tired to drive myself. And he talks me out of taking on more than my body can handle—which is super important because I’m crazy stubborn and an overachiever.

Even on our worst days, when we’re arguing like two over-tired toddlers, he is my best friend and the most caring person I’ve ever met. So I consider our marriage another gift from my autoimmune disease.

These days I take everything a day at a time—sometimes even an hour at a time. On my good days, I take full advantage; I power clean the house, write thousands of words for my current work in progress, and go for mile-long walks. On my bad days, or during flareups, I often can’t get out of bed because my joints are too stiff and achy. I park myself on the couch under my electric blanket until the morning stiffness goes away. I have a short window of time when the pain and stiffness aren’t too bad. That’s when I have to choose which chores are most important, and what I can trade off for a shower. After a few hours, the stiffness sets back in and the pain ramps up. Cooking dinner feels like climbing a mountain that never ends. My husband offers to help and I have too much pride to accept.

For a while, when my previous rheumatologist had diagnosed me with Reactive Arthritis, I took Sulfasalazine (a disease-modifying anti-rheumatic drug, or DMARD) and Mobic (a non-steroidal anti-inflammatory drug, or NSAID). The SSZ I felt helped at first, but after a while it didn’t seem to be as effective and had nasty side effects (pounding headache, metallic taste in my mouth, dry mouth, and fatigue). The Mobic I felt never made a difference, which is my experience with all NSAIDs I’ve tried to far.

I’ve been wanting to try another DMARD. They’re all different and everyone has different biochemistries. Patients can have completely different symptoms even though they have the same autoimmune disease. They can also have completely different experiences on the same DMARD. I see my new rheumatologist, Dr. S, again on December 1st to evaluate whether I can try Plaquenil—a DMARD originally developed to treat malaria that is now also used to treat Lupus and other autoimmune diseases. He wants to run my labs again and check my markers; I’m also hoping to bring him some of my old medical records from my past primary care provider and the very first rheumatologist I saw—records that show lots of evidence toward something autoimmune. The PCP I began seeing after my pediatrician was convinced I have Lupus. Many of the symptoms do match.

I’m undiagnosed again, which means it’s time to start sleuthing again. I expressed to Dr. S that I really need someone who’s going to work with me to figure this out, and that I don’t want to feel dismissed. He promised to do his part, so I’m hopeful.

I’m a warrior princess, and I’ll keep fighting until I get the quality of life I deserve.

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via GIPHY

Updated Friday, November 18th, 2016.

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