Treatments
There have been so many treatments; some are great, and some are bad. It’s nice to know that even if a treatment doesn’t work, they’re not going to give up. They’re going to keep trying. A few years ago, I started doing injections every week. It hurt, and it was kind of strange to self-inflict pain, but the shots worked really well. When I was six or seven, I had some sort of IV; I don’t remember exactly, but I had to carry it in a pouch around my waist. It looked like a little tiny bomb. It was hard because it was so conspicuous. I think that when you’re six, you don’t really like people to know how desperately sick you are, and that was a really big indicator. I was fed off of NG tubes for a month, and I was lucky because I could still go out in public with them rather than staying in the hospital. But that was sort of hard because everyone would look at them.