There are so many things to blog about, and so little time. Tonight I am completely exhausted. The good news is I feel a lot better today. Yes, I've still got joint pain and some back pain, but it's nothing. I actually felt clear in the head today and was able to get a lot done for work - in fact I worked an eight hour day and then came home and put in another four hours. That's why I'm tired and not blogging about all the things I want to right now. I also ate like a normal person today (actually too much probably) and had no tummy cramps or strange poo. Everything was wonderfully normal. But, that's the way bowel stuff with HPS can be, and why I worry about catching it early. It's often subtle and fleeting, like trying to shoot at a fast moving target. But, I did want to leave the url for Leroy's cancer blog, firstly because I'll probably be talking about it some over the next few weeks, and secondly becuase it's just really good. When I started th...
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life