Interstitial cystitis is the culprit for some of us. It is like have a bladder infection all the time but there is no infection. Just inflammation and pain. I always thought it was gynocological until I had a total hysterectomy. Well, now I know it's not my uterus. And apparently the hysterectomy itself can cause the IC to flare up. Good to know that ahead of time, it would have been.
You know that feeling where you feel like you need to pee and you go and you don't? Over and over all night and day and you can't sleep? I had that for years, even back in childhood, but I just thought it was some quirk only I had. I thought it was in my brain. Why didn't I tell someone? Nobody wants to talk about pee-pee! Now I know that is a symptom of a UTI. On my list of things to do: get my medical records and find out how many times I was preemptively prescribed antibiotics for suspected infections that turned out not to exist. That is also IC.
I couldn't sleep because of it one night in college and wrote a poem about wandering the halls at night. The poem won a contest and was published in the school paper. I didn't mention the peeing thing in the poem of course, but every time someone mentioned the poem, I thought about the reason I had written it.
I quit piano in high school because the problem that has no name flared up and I didn't think I could sit on the piano bench for a half-hour after school. In related news, my high school took all the doors off the bathroom stalls so people wouldn't smoke in there. That's hard for a person with an embarrassing condition. Hard on everyone.
Well it's 30 years since IC impacted my life in a big way. Now I finally have a diagnosis, and am working on treating it with a special diet, which forbids almost everything I like to eat. Treatments for IC include being catheterized on a regular basis and having your bladder filled up with some solution that is supposed to relieve pain. The idea of a catheter makes the hairs on the back of my neck stand up. Oh, this treatment doesn't work very well either. There are also meds. One makes you gain weight, the other makes you gain weight and lose some of your hair and it costs 500 bucks a month after insurance. So I am going with the diet. And herbs like marshmallow root and aloe versa juice. I'll let you know.
I miss curry and thai food and jambalaya and orange juice and strawberries and vinegar and soy sauce and salad dressing and hummus and every freaking condiment anyone ever put on a sandwich. And pretty much any food with taste. I can eat three fruits: blueberries, pears, and watermelon. I can still have salmon and avocado and thank the goddess feta cheese. Something that is me. I get to keep feta. Caffeine, alcohol, artificial sweeteners, you were already dead to me. Can I have hummus back please?
But maybe maybe I can get this solved and not hurt everyday. I did not go to work today. I stayed home to whine. And eat bland food. And try to be funny about it and not be too embarrassed to talk about it. I would rather have a glamorous condition. Why can't I have pleurosis? Or consumption? Glamorous people are glamorous with those and they write plays and operas about your suffering. Nobody wrote a play about IC. Maybe Urinetown.