Today went much better than yesterday, and while I’m still tired tonight, I do feel better than yesterday. I think getting a half decent night of sleep and being able to eat today helped. Yesterday NIH just wasn’t its self. Sure, they’re often not on time for things and you’ve got to go with the flow – but yesterday was particularly bad. The computer system was having trouble. I didn’t arrive for a single test where they knew who I was or had orders in to do the test. Every diagnostic appointment ran behind, and I had a long list of tests to do. I didn’t get my blood taken until around 3:30 pm. To make it worse, the air conditioning in the building wasn’t working well. It was so HOT! They were putting fans around, but a little fan doesn’t do much in a huge building. I was feeling pretty out of whack by the end of the day. The combination of no food and drink, it being hot, and all the blood taken, was not agreeing with me. And then there was the pee saga. I have to do a 48-hour urine
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life