My Rare Disease Part 8: Rare Disease

Back to Part 7: Tests ~

Around day seven they started doing different tests to explore the possibility that it might not be the stomach virus that had been going around. The nurse gave me a new shot every morning at 6:00 a.m. An associate of my doctor came in to explain what they were going to do next. He was young—fresh out of med. school, I presumed—and it looked to me like he had to struggle to keep a straight face every time he uttered the word “diarrhea,” which, to his misfortune, he was required to utter prolifically when discussing my case. They were starting to eliminate possibilities, he told me, managing not to snicker. There was a very rare disease and very little chance that I had it, but they had to start eliminating things to find out what the real problem was. So that’s where they were going to start. Again, he was sure I didn’t have that very rare disease. But procedure dictated that this was where they must begin.

A nurse handed me a two-inch stack of loose paper. “This is information on celiac disease,” she said. “It’s very unlikely this is what you have, but we’ll be putting you on a special diet to eliminate that possibility.” I looked down at the stack of paper on my lap and for the first time, I wanted to laugh. I hoped there wouldn’t be a test on this.

When everyone was gone, I started to read through the information the nurse had left. Celiac Disease; Gluten Intolerance; Gluten Sensitive Enteropathy; Malabsorption Syndrome; Nontropical Sprue … the list went on. I read three pages before deciding I did not have that disease. People who had that disease could not eat anything. No pasta, no bread, no cake or cookies, no food with unknown origin, not to mention bacon double cheeseburgers. Those three pages of information eliminated everything. And not only did I absolutely love food, I was currently starving.

They put me on the diet anyway, and my mom stopped bringing me buttered noodles in a thermos. Almost immediately, I showed signs of improvement. It must be a coincidence, I thought. My stomach virus is finally clearing up! Apparently, my doctor had been waiting for that window of opportunity to release me from the hospital so I could travel to a gastroenterology specialist for a certain procedure. As day eight showed more improvement, my release was scheduled for day nine. The special procedure, which turned out to be an endoscopy and biopsy of my small intestine, occurred shortly thereafter.

The results of the procedure would take a couple of weeks. So I waited, and I worked, and I drank plenty of orange juice to keep my potassium levels up. I tried to stick to that crazy diet, which consisted of bland meats, vegetables, fruits, potatoes, and rice, and I also started exercising because my body seemed to be inflating as quickly as an air mattress hooked up to a battery-powered pump.

Two weeks after the procedure, I hoped and prayed I’d get the results before the weekend so I knew if I could eat pasta or not. Before the stomach virus, I’d started what was quickly becoming a Friday night ritual of dining with my parents and friends at the local Italian restaurant. We drank Chianti, and talked, and laughed, and I ate mounds of eggplant Parmesan and angel hair pasta before retiring, satiated, home to bed.

After living away from my family for the past two years, these times together were like soul medicine. It was as much of an escape from the reality of my thirty-year-old life—having recently left the man I was only then beginning to realize was not my life partner, along with the life we’d made together, most of my belongings, and a failed career—as it was an elixir, with the strength of familial roots binding instinctively together to hold me up when I couldn’t do it myself. The truth was, that Friday night pasta filled me up, if only for those few brief hours every week. That’s why I stared at the telephone, willing it to ring that Friday afternoon at work. So I would know that the tests were O.K., and I could eat pasta with my family. So I could fill myself up with it. But five o’clock came, and the call with my test results did not. I decided to eat the pasta anyway.

Next ~ Part 9: Diagnosis

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2 Responses to “My Rare Disease Part 8: Rare Disease”

  1. Mary says:

    Nooo, 30-year-old Tara, don’t eat the pasta!

    • tmcaimi says:

      I know, Mary, isn’t that crazy? Looking back, I can’t believe I did it. But as I said to Dave earlier (you and he seem to be having similar reactions to my story), I was in denial. That pasta was my last ditch effort to achieve ignorant bliss. It worked for about three hours.

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