I taught the day after Christmas break. After 17.5 years of teaching, it would turn out to be my last day. I went to my rheumatologist’s appointment after school and learned if I wanted to be there for my own children, I would need to take a leave from teaching. He felt it was time to seek the advice of more specialists. In early January, I had an appointment with the rheumatologists at the University of Michigan hospital in Ann Arbor. I went straight from my appointment to admissions, where over the course of the following week countless tests were run and rerun. By the end of the week, the following conclusions were drawn. I had elevated lactic acid levels and the doctors believed I was suffering from ischemia of the bowel. They also felt I had celiac artery compression syndrome which would require surgery, but my prednisone levels had been increased while in the hospital and the surgery would need to wait until they were lowered. Finally, they confirmed the lupus diagnosis.
When I returned to see one of U of M’s top vascular specialists six weeks later, he felt the celiac artery alone would not be causing my digestive problems and strongly suspected small vessel vasculitis. Surgery was no longer recommended and I began taking CellCept, an experimental drug first designed for chemotherapy patients. It was a strong anti-inflammatory and immunosupressant. It was also brutal on the stomach, a challenging drug for someone who was already having a difficult time eating.
I started with a half pill, 250mg and over the next several weeks gradually increased to 1500 mg twice a day. Because you could not eat two hours before and up to an hour after, my eating schedule became very regimented. I suddenly had a greater understanding for my grandmother.
I found that oatmeal helped ease the painful side-affects of some of my medications and those I was to take with food, I took with oatmeal. I found I could tolerate pumpkin cookies made from organic ingredients. Later, friends sent a pumpkin bread recipe that was also delicious. When nearly all food became extremely difficult to eat, these foods, along with SlimFast supplementation kept me going.
SlimFast? Why would someone 5’ 9”, who went from a size 12 to a size 4 drink SlimFast? I did get some strange looks in the grocery store, but the answer was simple. I couldn’t tolerate the taste of Ensure or Boost. I mixed SlimFast into Shetler's milk and could tolerate the taste. I supplemented twice a day.
To counter inflammation and further compromise my immune system, I stayed on higher dosages of prednisone, taking up knitting to combat the side-effects. I tested negative for SPRUE on multiple occasions and was not allergic to the common foods. This didn’t surprise me. It wasn’t that I couldn’t eat flour. I just couldn’t eat highly processed flour and it needed to be organic. I was especially sensitive to any fruit that was not organic, even bananas and watermelon. The more processed the food, the more difficult time I had eating it. I also had trouble with anything acidic. I had become very sensitive to additives and preservatives. As for meats, I could tolerate fish. In the early days, I was often doubled over in pain within minutes of eating. Some foods seemed to pass very quickly. Eating out was nearly impossible. Traveling, extremely difficult. I began to pack my own food wherever I went. It was too difficult to find food on the road. There would come a day when my body couldn't tolerate SlimFast and I was forced to turn to baby food to keep going, much to my daughters' horror. I am happy to say baby food is no longer in my diet.
Tomorrow, the pumpkin recipes...
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