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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...
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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...
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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...
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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"...
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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...
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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...
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Well, I’ve been hanging in there with the CPAP every night. I’ve got little marks on my cheeks now to prove it. I still can’t seem to get through a night though. Well, I do, but I’m up several times a night messing with the mask. Last night I did a new...
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Regular blog readers have heard me whine before about my fatigue issues. It’s been a problem since college, and lately, it’s been a big problem. When you fall asleep standing up against a telephone pole at the bus stop and the bus has to honk at you to...
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One of the other missions of the week during my NIH visit was to get an IUD inserted. I hadn’t blogged much about this, but it’s really been a time issue and not because it’s too personal. Women with Hermansky-Pudlak Syndrome frequently develop problems...
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What a week. What is it they say about the best laid plans? This admission at NIH was supposed to be maybe a bit longer than the usual Pirfenidone trial admission, but still pretty simple and routine. And from the perspective of the trial, everything...
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Well, I'm here. The flight was great. I really do love Midwest Express. I hope nothing happens to them with all the rises in gas prices etc. It is so nice to fly and not feel like you've been wedged into your seat like freight. Hector met me at...
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I need a sabbatical. I feel like whining. I’m tired Friday it was a battle all day to be able to work because all I wanted to do was fall asleep. I took the early bus home and was in bed by 5:00 pm. I woke up about 10:00 pm or so briefly, but went back...
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It’s been quite the couple of days. As anyone who knows me will tell you, housekeeping is not my strong suit. It isn’t that I can’t do it. It’s that I hate doing it. And, it’s that I find it really difficult to get worked up about dusting when it feels...
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I haven’t posted in days. Regulars know this is highly unusual. I’m addicted to self expression and it just about kills me not to be able to journal, or blog. But these past few days I’ve been so under the weather the building could have caught fire and...
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As my friend Sheena would say, I need a little cheese to go with my whine. I’m in the mood for a good whine. Ever want to cut your nose off from the rest of your face? How is it possible that gallons of snot can come from a single person’s head? Is it...
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