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Tara's Story

 
5/25/2011

[Note: This story is an excerpt from Tara's 10-day series about her experience with celiac disease. To read the full story, visit www.taracaimi.com]

On Christmas day after I moved back to Pennsylvania, I was under the weather and unable to eat much of anything. Our Christmas celebrations always took place at my parents’ house. This year, they invited a few friends over who, upon noting my unusual lack of enthusiasm for party food, told me about a stomach virus that was going around. Everyone seemed to have it, they said, and it usually lasted a week or two.

Another week passed, and the virus didn’t go away. It occurred to me that I’d experienced similar illnesses—the last of which had been right before I’d moved to Utah. Just like this time, I couldn’t keep food in my system long enough for it to digest, so I drank massive amounts of Gatorade to keep myself from getting dehydrated. I went to the doctor twice before moving to Utah, but she couldn’t figure out what was wrong. Medicine seemed to make it worse, and since I was moving, there was no time to see a specialist. I lost at least 5 pounds on the Gatorade diet before my health suddenly improved. I didn’t determine the cause of that illness, nor did I gain those 5 pounds back during the 2 years I lived in Utah.

This time, though, Gatorade wasn’t doing the trick, and after about 3 weeks, desperation propelled me to the emergency room. The attending tested my blood pressure while I was sitting and again while I was standing. Then he hastened to start an IV. My diagnosis was severe dehydration and low potassium.

In less than an hour, I cultivated a new and surprising respect for hydration. I no longer felt dizzy or gasped for breath from the overexertion of standing, and I could walk more than five steps without stopping to rest. I felt like a new person—so good, in fact, that I immediately feasted on a giant comfort meal of roast beef with gravy over fluffy white bread. I had barely eaten anything but chicken noodle soup in the past few weeks, and, sopping up the succulent gravy with soft, springy bread, my fork full of tender roast beef, I was almost certain that a meal never tasted so good. I was also certain I was finally on the mend from that awful stomach virus. My certainty, however, was short-lived. That night, almost as quickly as the artificial rehydration had pumped up my energy, the stomach virus purged it all back out.

It appeared I was losing my battle with the mysterious virus that was going around, but with all the strength I had left, I resisted calling in sick to my new job. From August to November, I had applied for every job I’d seen advertised in the state of Pennsylvania with a description that even remotely resembled my qualifications. I’d received only one offer—the one I took. Even though I could only walk a few feet at a time without losing all my breath, I made it to work without fail, every single day.

I was at work the week after I’d been to the emergency room, when a coworker offered to run out for bagels. I knew it was risky, but a bagel sounded perfect. I felt like I hadn’t eaten in a month. My hunger was primal, and in the end, common sense didn’t stand a chance. About 10 seconds flat after devouring half a bagel, the nausea came in a dizzying wave. It was 11 a.m., and I had to leave work. I called in sick the next day, and the next. I couldn’t believe how quickly my strength had vanished after I’d been to the emergency room and felt so well. I didn’t have a doctor in town, so I was lucky to get an appointment with one I’d been to in the distant past.

This doctor had been a family friend when I was just a little girl. I’d spent many Saturday afternoons swimming with his kids in the above-ground pool in their yard. I’d later gone to school with those same kids and, even later, went to this doctor when I began to experience health problems in college and didn’t know where to turn. His diagnosis on most of my visits was severe anemia.

“You really should have a blood transfusion,” he told me when I explained how sick the iron supplements made me. There was no way I was having a blood transfusion. Instead of forcing the issue, this doctor was understanding enough to prescribe a different type of iron supplement—one that was supposed to be easier on the system. When the new iron supplements made me even sicker, I threw them away and didn’t contact that doctor again, until now.

My dad had been helping me over the last few weeks by stopping in several times a day to walk Katy. On one of his visits, I asked him to drive me to the doctor appointment. When we arrived, he helped me out of the car and supported me by the arm across the parking lot, up four steps, and into the office. I sank into the first waiting room chair I saw, breathing heavily from the effort of walking what amounted to less than twenty feet. I couldn’t imagine what was wrong with me, but I had hope that the doctor could help.

In the examining room I said, “I feel like I’m dying.” The doctor asked me how many times a day I was going to the bathroom and if it seemed like I was eliminating more than I was taking in. I didn’t know how to answer.

“About 10, and I have no idea,” I said. He didn’t ask if I’d ever experienced anything similar before, but he did tell me there had been a stomach virus going around for a few weeks.

He said, “I think you’re getting better,” and he smiled.

That’s when I lost hope…

...In the end, my own path did find me, in a manner I could scarcely have predicted or even imagined. When I first heard the diagnosis over the telephone, my heart shriveled with the knowledge that life as I knew it was over. The more I dwelled on the circumstances, though, the more I realized that my life made more sense now than it ever had. Celiac disease, I’d learned in the wake of my diagnosis, was perfectly controllable through a gluten-free diet. Though it wasn’t easy or convenient, it also wasn’t impossible. I already felt better than I had in years. I was stronger and healthier and, for the first time ever, in control of these aspects of my life.

Had I not been diagnosed with celiac disease, I wondered, what kind of a life would I have had? Or more to the point, Would I have had any life at all? Though I will never truly know the answers to these questions, my suspicions were enough to help me accept the fact that I had a lifelong disease. Like it or not, the path was finally clear, and my gluten-free journey was about to begin.

You know the problem. Now be the solution.

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