I don’t fight my disease; I fight my insurance company. I see at least four doctors. I see each doctor numerous times per year. I did not anticipate this when I was in my twenties. I thought I would be seeing a doctor once per year any maybe the OB/GYN regularly. I never thought I would be seeing multiple specialists over fifteen times per year.
I get infusions every five weeks. Eleven times per year. Each one is over $5000, and that does not count the visit or any lab work I may need if I am sick.
My medication costs $75000 per year retail in the US. My copayment requirements are over $1000 with my insurance, and I have two medications that are not covered at all. The medications have been declined. I am only able to afford to pay cash for one of the declined medications. I am non-compliant with the immunoglobulin therapy. The insurance company states that it is experimental and when that argument was dispelled; they stated that it was not cleared for my autoimmune disease (any of the three apparently).
Speaking of the insurance company and denials; most of my lab work is declined and the test to confirm one of my autoimmune diseases was declined, the lab work that checks the level of my chemotherapeutic drug levels, and my anesthesiologist for invasive tests have all been declined.
I do not fight a disease; I live with three diseases. I fight my insurance company. I am financially devastated, and my children cannot attend college as I wanted. I will never retire, and I will never own a home of my own. If it were not for the generosity of my family and friends, I would be homeless and not able to be as compliant as I am now. I would be disabled.
Today I was asked what was the difference between Crohn’s disease and Celiac disease. I have both. Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract. Crohn’s disease can affect any part of the digestive tract but most commonly will effect the terminal end of the small intestine and the beginning of the large bowel. (CCFA.ORG) The inflammatory process can skip areas of the GI tract but also can cause problems in the entire thickness of the bowel wall. This makes the disease difficult to confirm in some people because there can be healthy sections of bowel. Information about this disease can be found on ccfa.org.
Celiac disease is an autoimmune disorder. People with celiac disease cannot eat gluten because, in affected individuals, the gluten will lead to damage in the small intestine that prevents efficient absorption of nutrients. The only common treatment for this disease is a gluten-free diet. That is not such an easy thing in the US as we depend on wheat and other gluten producing products for much of our food supply. Information about Celiac disease can be found on celiac.org.
I think that having both of these together makes people uncomfortable with me. People, even my family, do not know how to feed me. Eating is such a large part of what is considered social in the US and probably everywhere. Dinner and a movie, popcorn at the movie, and ice cream after that. A date can add up to about 2500 calories and tons of gluten containing products.
People automatically think that I have an excellent diet and that I am always eating healthy. Or that I am on a diet. None of these is true. If you want to know, gluten free products are just as bad or even worse than the normal gluten-containing produced (or over produced) foods in the market. The easiest way to be safe is to eat whole foods. This is true for everyone, not just me.
The next question is always…What do you eat? Well, I eat food. Meat, yes meat, fruit, rice, potatoes, corn, squash, eggplant, spinach, fish, etc. I do not do very well with raw vegetables because of the crohns, but I can steam almost everything. I can make sandwiches out of lettuce or rice cakes, or gluten free waffles. I just have to be a little bit more creative. A gluten free diet is a medical treatment, not a fad.