Embracing Freedom

My problems started back in high school, sort of insidiously, increasing throughout my college/young adulthood. I had a “nervous stomach” – sort of a mixture of irritable bowel and social anxiety issues. Every time I ate at a restaurant, I’d have serious digestive consequences (let’s just leave the actual symptomology up to your own imagination – we’ll suffice it to say, I knew where every bathroom in town was). When I was tired, stressed, worried...it was the same thing. I got to where I could pretty much predict it. And when I mentioned it to my doctor (on several different occasions), I was told “EMTs think they have everything wrong them” or “Nursing students are the worst, they always think they have something horribly wrong with them” or “Nurses are the worst patients because they just don’t take care of themselves and then they think there is something wrong with them.” I got to the point that I stopped mentioning the fatigue, the lack of motivation, the digestive issues, the joint pain, the constant skin itching. It wasn’t worth it...being made to feel like everything was my own fault and all in my head.

I take responsibility for being out of shape and overweight, but the last few years have gotten a lot worse. It’s difficult raising a precocious toddler/preschooler and I started blaming everything on motherhood. I was so tired because she was a handful. I lacked motivation to do anything because, by the time I got her to bed, I was just too worn out. I wasn’t taking care of myself because I was taking care of her. Single moms are supposed to feel this way, right?

A few weeks after completing M’s adoption and returning from Ethiopia, I became very sick with mono. Mono is a virus that seems pretty harmless, although not fun for the patient. But it can trigger more serious conditions. Shortly after having mono, I started having skin eruptions on my arms…starting out as intensely itchy blisters that erupted in the matter of hours into quarter-sized, weeping lesions. Multiple doctors' visits, dermatology appointments, wound cultures, fungal cultures, skin biopsies, different medications and 2.5 years later, we were no closer to answers. I was diagnosed with everything from venomous bug bites to unknown fungus, I was tested for everything from leishmaniasis to leprosy. Because of the tenacious form of ringworm that my daughter came home from Ethiopia with, coupled with the fact that my lesions somewhat responded to anti-fungal meds, I was diagnosed with an unknown fungal infection....we were going down a dead-end path.

Less than 2 weeks ago, my daughter and I were stricken with Influenza A. It knocked me pretty low and completely wiped me out. Two days into the illness, I erupted with new skin lesions on my hands and made another trip back to the doctor. Without a whole lot of hope, we decided that maybe I should be put on monthly anti-fungals to prevent new eruptions and that this particular episode was triggered by my low immune system from the flu. Two more days went by and the meds were having no effect and my hand was swollen to the point that I couldn’t bend two fingers. I was desperate for answers. My PCP was closed on Fridays, neither dermatologist I had been to before could squeeze me in, I really didn’t want another ER visit but I knew I couldn’t make it through the weekend without antibiotics. So I called a good friend who worked me in with a new family doctor, late on a Friday afternoon. And then things changed.

After reading through my checksheet of symptoms (none of which I thought related to my visit that day, but I was honest with the paper), he looked at me and asked me if I had ever been worked up for celiac sprue. I had often wondered about celiac but I was living under the impression that “nothing could really be wrong with me.” I knew nothing about the skin manifestations of celiac (called dermatitis herpetaformis) and was very surprised when I got home and googled it to find myself reading a textbook page of my life. I started researching celiac sprue and gluten-free diets even before I had the blood test results.

Blood tests which were positive. And not a surprise.

So, now we begin a new life. A gluten-free life. While I’m apprehensive about the things I’ll miss, I’m going to embrace this change. Everyone that I have talked to about it has instantly said “you will feel SO MUCH BETTER.” That’s encouraging. If changing my diet can make me regain my energy and motivation, I will join in full-steam. If eliminating foods from my kitchen will give me the focus, patience, and fire to keep up with my spunky 4-yr-old, then I will never look back. Starting tomorrow, April 1st, I will begin a new life. Liberating myself from gluten.

I invite you to come along with me, encourage me, educate me. I’m going to learn new ways of cooking, explore new foods, and start living life again.