That Time Last Week When I Was Diagnosed With an Autoimmune Disease

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I’ve always considered myself to be a healthy individual—I’ve only had to take off one “real” sick day from work in the past 3 years (the others were used up for maternity leave and mental health days), I went years without having a doctor to call my own, and the greatest health challenge I’d ever faced was a bout with childhood asthma that only lasted about a year back in the 7th grade.

Sure, I’ve dealt with other things, too—continuous cycles of parasites during my time in Central America, a week with dengue fever (that I didn’t realize I had until I collapsed one day in the street), internal bleeding from a trampoline accident when I was 15—but because none of those things ever stuck around for long enough to become part of my permanent identity, they were never enough to convince me that I wasn’t the glowing picture of youthful health.

That all changed last week.

Well, it really all changed several months ago, but as I’m so very good at ignoring symptoms and passing them off as “normal,” I went months and months without getting diagnosed or treated.

It all started with what I thought was “pregnancy mask”–two red strips on either side of my nose that extended to the tops of my cheeks and occasionally to my eyelids. Because I’d read that facial skin discolorations were a normal reaction of a woman’s body to pregnancy, I chalked it up to that and hoped that the redness would disappear soon after the arrival of my baby.

Then, about five months along in my pregnancy, I started noticing red, itchy, scaly skin at the top of my left arm. Because I’d had minor bouts with eczema throughout my life, I chalked it up to that (and the seriousness of it to my raging hormones), and vigorously started applying lotion, even though some of my students had started to notice the rash and ask what was wrong. And even though the redness started to spread slowly but surely to my chest and other arm, I figured it would all just go away when my hormones were back in normal ranges.

Fast forward several months–I was about five and a half weeks postpartum, attending my first exercise class since having the baby. I had finally been driven to the dermatologist by the nonstop itching and had been prescribed topical steroids to treat what seemed to be a major flare-up of eczema. While I went through the choreography of the aerobics hip hop class that night, I noticed that I couldn’t seem to do any of the moves involving squats without experiencing muscle shakes and extreme soreness.

“It’s probably just my body recovering from the labor process still,” I reasoned. “I haven’t exercised in months–my body’s just not used to all this cardio anymore.”

I continued to attend the hip hop class once a week, even though the class often left my muscles so weak that I could barely walk. “This is just what it takes to get back into shape,” I thought. “No pain, no gain.”

Within a couple weeks of starting back into exercise, the muscle soreness seemed to spread rapidly. Every morning when I woke up, I felt like I’d literally run a marathon the day before and could hardly get the energy to get up. Every time I picked up Raven in her carseat, I felt like my back would break. Soon, the soreness extended into my neck, shoulders, and even my forearms–making me feel like I’d kept up a continual exercise regime that included hours of rock climbing followed by about 15 miles of running every day.

In reality, I’d stopped exercising almost entirely (other than the occasional hip hop class) because it was obvious my body was worn out, even though I was getting plenty of sleep each night.

I’d gone back to the dermatologist (a different one in the same office), and she seemed baffled by the fact that my rash had not responded to the topical steroid cream. She took two biopsies of my skin, and, almost as an afterthought, asked what other symptoms I’d been having. I told her about the muscle soreness and then randomly remembered about the “pregnancy mask,” which I mentioned.

“It’s red? And on the sides of your nose and cheeks?” she asked. (My face was covered in makeup, so the marks were invisible to her.)

“Yeah. It came on about five months into my pregnancy, and I figured it was just pregnancy mask, so I didn’t worry about it.”

“That’s not pregnancy mask–pregnancy mask is usually brown discolorations. Do you have a history of autoimmune diseases in your family? Like rheumatoid arthritis? Lupus?”

The arthritis sounded familiar, so I said that I thought it ran on my dad’s side.

The derm seemed deep in thought, and she scheduled an appointment three weeks out to review the results of my biopsy. Before leaving, she prescribed me a different topical skin treatment.

The next three weeks were a blur of worsening symptoms, trips online to WebMD (which Matt then banned me to check because it made me freak out too much), and phone calls to my mom. My mom was convinced I probably had celiac, like my sister, so I went in to the hospital lab to be checked for that. In the meantime, while I waited for the results of that, I went off gluten.

The week leading up to the appointment finally convinced me that I had something serious enough that I couldn’t just pass it off as a post-pregnancy thing anymore—my muscles had become so weak and sore that I could barely hold Raven (much less heft her around in her carseat) and had been forced to start asking Matt and other family members to hold her anytime she needed something other than feeding. My rash had become insupportable, and even though Matt continually warned me not to scratch, I couldn’t help it–my skin felt like it was on fire all the time, and I’d become so self-conscious about it (since it had now spread down both arms, all over my chest, and a little on my upper back) that I’d taken to wearing cardigans and long sleeves outside, even though the temperatures were hovering around 100 degrees.

Hoping desperately to get a definite diagnosis, I made a copious list of all my symptoms, when they’d first appeared, and all the diseases I knew about that ran in my family. I also made sure not to put on any skin makeup, so the red marks on my face could be definitely seen. By this time, I’d also developed additional little sores that only appeared on my joints–my knuckles, ankles, knees, etc. I had a feeling I’d need some moral support, so I asked Matt to come with me.

The new information seemed to confirm something with the dermatologist, but before she told me anything, she called in the head derm (she was a P/A at the office) to confirm her instinct. Within about 90 seconds, the dermatologist corroborated her diagnosis—

I had an uncommon autoimmune disease known as dermatomyositis, which is basically an AI disease where your body attacks its own muscle tissues. Characteristics of the disease include an itchy rash accompanied by muscle inflammation and weakness. The doctor assured me that if treated, the disease wouldn’t kill me,  but that it would be something I would deal with for the rest of my life.

Having never been diagnosed with a serious condition before, I didn’t know how to react–while my first feeling was a burning in my throat and a desire to cry, that feeling was almost immediately followed up with a feeling of intense relief—I wasn’t going crazy! There really was something causing all my symptoms, it had a name, and there were medications that could treat my symptoms.

I’ve been taking an oral corticosteroid for five days now, and I’ve already noticed significant improvement–I no longer feel like I’ve been hit by a truck every morning when I wake up, and my rash has started to become less prominent. I have an appointment in a few weeks down at the University of Utah to test the progression of the disease and to make sure it’s not cancerous.

As life-changing as this news is, I feel like it doesn’t define me. Sure, I may have an AI disease that will never go away, but I’m still the same person I was before, with all the same hopes and dreams. This diagnosis doesn’t change any of that. I still plan to run half-marathons and marathons in the future (when my disease isn’t in the middle of a flare-up), I still plan to teach full-time in the fall, and I’m looking forward to many golden years spent with my husband and Raven and other future children.

Through it all, I’ve felt incredibly lucky—as the main dermatologist pointed out, many patients often go years without a correct diagnosis because it’s hard to put all the symptoms together (especially when patients often go to several different specialists to look at all the different symptoms). I’m thankful for a P/A who was able to quickly put them all together and get me the treatment I need. I’m still a little nervous for my appointment at the U (and am obviously hoping that it’s not malignant), but I’m feeling a lot more hopeful now that I’m not so exhausted anymore.

Have any of you gotten a life-changing health diagnosis? How did you react?

 

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