I haven’t posted an update in a bit. It’s been super busy and honestly, I just have days where I can barely keep my head above water and do what absolutely must get done that day. All and all I am doing well. I started a new medication and am hopeful it will help with some of this. It does take a bit for your body to adjust to it though. Some people have no issues, while others get side-effect symptoms. I’ve had some of those issues, but really can’t say for sure if they are related to the medication. For example, I’ve had stomach upset and some nausea, but then again with my gastrointestinal issues, I go through times when I have that already. It’s hard to say if it is related or just bad timing. Either way, it doesn’t matter. It isn’t so bad that I can’t cope with it. The biggest issue isn’t even so much the stomach upset as it is the getting up every 40 minutes or so all night to go to the bathroom. A few nights of that really wears a person out! Grin! Today I’m having some mild tum
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life