Random thoughts about NIH

So, I have to show up at NIH in a few weeks and stay there for close to a week. This is all because I have this hereditary disorder in which they're interested. It's a federal building, so just like the airport, you have to show up early. Happily, we have friends who live about a one-minute drive from NIH, so that's helpful. They also told me if I'm driving not to have any weapons, alcohol or pets in my car. Duly noted. Leave goldfish, machete and Mad Dog 20-20 at home.

I'm a little bit scared. They need to do a muscle biopsy, which is when they'll take a chunk of my thigh out. (You're jealous, I can tell.) That won't feel great, after the meds wear off. I also need to do another barium swallow. Have to do that before the last day, b/c who knows how long it will take to reach the Maryland House or the Chesapeake House? Not me.

I don't think of myself as sick or handicapped, although I did ask someone to get up on the bus today b/c he was sitting in seats prioritized for disabled people, and I don't have enough control over my legs to make sure I don't wind up in someone's lap, which has happened, to my ever-lasting embarrassment. (It'd be different if I didn't see the guy into whose lap I crashed every single day on my train.)

I'm going there b/c I need answers. There is no cure for what I have, so it's just a matter of palliative management. It will eventually kill me, but not for a long, long time. But there are some steps I can take, and I'd like to know what they are.

I had to can my neurologist b/c he couldn't/didn't give me answers. I told him words like "docile" and "passive" simply don't apply to me, and not to expect me to be like that, and that I wanted answers. But he in his buzzkill way didn't have them. This is why he's no longer my doctor.