You Could Find Me In the (Autoimmune) Club, Bottle Full of Bud

I always sort of knew I might develop an autoimmune disease at some point. The women in my family are riddled with them, and they get them fast and hard. My mom died of lupus 3 weeks after her 52nd birthday. My grandmother developed rheumatoid arthritis in her mid thirties and was wheelchair bound for most of her life thereafter. All of my aunts and many of my cousins have some form of thyroid disease, rheumatoid arthritis, lupus, or some combination of them. So I had a good sense that something might come up for me eventually. I got tested every few years for lupus and R.A. and all my tests were good – my blood pressure is low, cholesterol too, my diet’s clean, I’m physically active, no joint pain and I could run three or four miles without passing out, so I thought I still had a long way to go before I developed problems. But, like I say, everything happens, especially change.

About a year ago I started having digestive problems. It came on slowly at first, just discomfort after eating, but more and more I started noticing that food, in general, was making me sick. As my symptoms got worse, I tried various elimination diets, trying to identify what was causing so much grief – gluten? dairy? alcohol? caffeine? sugar? But no matter what I took out or put into my diet, I kept getting sicker… and sicker. I got to a point where food wouldn’t stay in my body long enough to digest anything. I was bloated, and pale, and in so much pain that I basically trembled constantly, and I’d gotten so used to it that I didn’t even notice I was going through my life like a beat-down robot. Then my boyfriend and one of my best friends teamed up and made me finally go to the doctor. It took about 6 weeks of increasingly unpleasant tests for the doctor’s to identify what I have as Crohn’s disease and confirm that yes, in fact it was all food that was making me sick, or rather it was my immune system that was making me sick in such a way that no food could possibly feel good. Crohn’s is an autoimmune disease where your body sends too many white blood cells to parts of your digestive system causing inflammation, ulcers and erosion of various membranes, so that when you eat, it’s kinda like shoving food into an open wound. When I saw the scopes of my insides it looked like I’d been eating shards of glass and battery acid for days.

Then, just as my doctor was coming up with a treatment plan,, my immune system continued to get hopped up like a college girl on Cuervo and sugar-free GoGirl, and got all ratchet on the hardware in my (formerly broken) leg. After almost six months of steady healing, my leg started doing a historical reenactment of what it looked and felt like when it was first broken (swollen to twice its normal size, impossible to put any weight on it.) And it kept getting worse! Red, blotchy, firey hot, it looked like I had dunked my leg from the knee down in boiling water, I assumed I had reinjured it, but when I mentioned it to my trusty GI doctor, she identified it as an extension of the Crohn’s disease. So now we know that what’s going on is a more general inflammatory condition and whenever my body feels stress, it starts ramping up and goes off to fight The Great War somewhere in my body, and if there’s no war to fight, it damn sure starts one.At least now we have a diagnois(ish) and a plan.

Knowing that autoimmune disease is triggered and aggravated by stress, it made perfect sense that this had started when it did, 6 months after I was run over by a motorcycle, amid all the stress of balancing an intense physical therapy schedule, full-time work, a 10 mile commute on public transportation on crutches, fighting daily with hospital accountants and my insurance company, and learning that my boyfriend and I were on our own because the dirtbag who ran me over had no insurance. Stress-wise, I was fully primed for my immune system to overreact.The good news about that, from my perspective, is that because it responds so dramatically to stress, it’ll probably respond well to stress-reduction.

So while we convince my white blood cells to go home and sleep it off, I’m on steroids, anti-inflammatories and a super limited diet of basically white starchy food and meat. I’ll write more about the details of the diet and the creative solutions my boyfriend and I are coming up with to accommodate the new restrictions and challenges. If you have a similar situation, or a blog with recipes or tips, please feel free to share them! (and good luck with your healing!)

 

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Author: The Dalai Loca

Ileana Shevlin is a rock-concert accountant and writer living in Brooklyn. Her work has appeared in Muni Diaries, spiral-bound notebooks, and Google Docs. She probably owes L.A. Unified School District an invoice and an apology for all the great stories she left in the margins of their textbooks along the way.

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