NOAH AOC

Today I actually forced myself to go to the dentist, despite huge deadlines at work. I chipped a tooth back in June and have never felt like I had time to take care of it. Sometimes I feel like I miss so much work because of the drug trial, bleeding stomas etc. that it can be a challenge to find the...

Regular readers will remember that at my last NIH visit I finally broke down and decided to let Dr. Merideth insert a Murena IUD. I was a big chicken so the whole thing was probably more involved than it needed to be, but I’m so grateful to Dr. Merideth for being so tolerant of my nerves. I was sort...

Just a quick health update – mostly for my own record keeping purposes for NIH. Thursday I missed work thanks to a very upset stomach. I woke up about 3:00 am with nausea. I hadn’t eaten dinner that evening because I really wasn’t feeling like eating, but didn’t really know why. But hey, when I don’t...

As regular readers (and for that matter listserv posters) have probably noticed, I haven’t been online much in the last week. Part of it was getting locked out by Blogger, but part of it was just not feeling well. Last week it seemed like all my usual health gripes were acting up, as if I were having...

This week has been a tough one from the fatigue point of view. I’ve been taking my daytime medicine and trying to use the CPAP at night, but I find myself waking up six to seven times a night needing to go to the bathroom for varying reasons. Or, I’ll wake up because a neighbor has turned their car on...

I’ve been very good about my CPAP, at least as good as I can be. But, my face is starting to show the evidence of my good behavior. I now have four bleeding sores on my face where the mask hits against the skin. My face actually feels sore. A few friends that also have sleep apnea have suggested some...

I was disappointed Sunday to not be feeling very well. I was supposed to go to Lyra’s second birthday party. Lyra is a little girl in my area with albinism. Her family and I have gotten together two years in a row to raise some money for NOAH. She’s such a cutie, as are her older brother and sister....

Look out on the runways of Paris! Here I am on the second night of the sleep study. Jackie, the sleep tech, showed Dr. Markello how to make a little "hat" to keep the wires from going everywhere. She also showed us how to make a little "purse" to keep all the wires in so that I could...

I finally managed to sleep several hours with the CPAP mask on. Dr. Markello would be so proud – grin! The only trouble was it was the middle of the day when I did it. Usually I sleep in late on Saturday mornings, typically from complete exhaustion. But this morning I had an invitation to speak at our...

I got great news from my blood work on Thursday. The CK came back down to 65. Yippee! I would have been surprised if it hadn’t come down. I honestly think it was just one of those fluky things. But, because it was high I had to come off of my study drug (Pirfenidone or placebo) this week. Had it remained...