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. I was looking forward to getting out of my mother’s day funk and hanging out in the park with a bunch of kids.
But, it seems every time there’s a change in my medication, there’s a sort of adjustment period. I know if it was the medication, or something else, but I wasn’t up to being in a park. My stomach was a bit upset. My joints were hurting and my back hurt right about where my kidneys are.
I was bleeding again and felt crampy. So, either this was part of the overall female thing, perhaps adjusting to the IUD and its hormones, or maybe it was because I restarted my study drug. Who knows.
Sunday night, however, I managed to keep the CPAP mask on for five hours. Today I felt great! I had a very productive day at work and felt awake and alert. I came home and ran errands which involved walking several miles. But when I finally got home I did crash. By 8:00 pm I was pretty well spent.
So, things are slowly getting better.
Part of the trouble I have with the CPAP mask is that if it fits around the chin well, the air escapes around the bridge of my nose. And if I get the bridge of my nose right, then it’s leaking from around my chin. The only way to keep the seal complete is to wear the mask so tightly that it’s uncomfortable and makes marks on my face. Eventually those marks turn to bruises or sores. Not pretty.
But last night I had a eureka moment. At NIH Dr. Markello and I were trying to figure out how to modify the mask to help with this problem. I tried this thing they use to seal the masks they use for exercise stress tests. It didn’t really work. The mask wouldn’t stick to it, so it made it worse actually.
Last night, however, I got the idea to try putting just a little bit of stoma adhesive paste on the bridge of my nose. It sticks to things. You can mold it and smooth it out so that there aren’t gaps for the mask. And when it’s in the air for a while it hardens so when you tighten the mask it doesn’t just squish apart. Just a little bit seemed to build up the bridge of my nose just enough to make the mask fit better.
Hmmm……maybe this will work. I know the stoma adhesive paste won’t likely irritate my skin. I’ve used it for more than a decade on my stoma.
But, it seems every time there’s a change in my medication, there’s a sort of adjustment period. I know if it was the medication, or something else, but I wasn’t up to being in a park. My stomach was a bit upset. My joints were hurting and my back hurt right about where my kidneys are.
I was bleeding again and felt crampy. So, either this was part of the overall female thing, perhaps adjusting to the IUD and its hormones, or maybe it was because I restarted my study drug. Who knows.
Sunday night, however, I managed to keep the CPAP mask on for five hours. Today I felt great! I had a very productive day at work and felt awake and alert. I came home and ran errands which involved walking several miles. But when I finally got home I did crash. By 8:00 pm I was pretty well spent.
So, things are slowly getting better.
Part of the trouble I have with the CPAP mask is that if it fits around the chin well, the air escapes around the bridge of my nose. And if I get the bridge of my nose right, then it’s leaking from around my chin. The only way to keep the seal complete is to wear the mask so tightly that it’s uncomfortable and makes marks on my face. Eventually those marks turn to bruises or sores. Not pretty.
But last night I had a eureka moment. At NIH Dr. Markello and I were trying to figure out how to modify the mask to help with this problem. I tried this thing they use to seal the masks they use for exercise stress tests. It didn’t really work. The mask wouldn’t stick to it, so it made it worse actually.
Last night, however, I got the idea to try putting just a little bit of stoma adhesive paste on the bridge of my nose. It sticks to things. You can mold it and smooth it out so that there aren’t gaps for the mask. And when it’s in the air for a while it hardens so when you tighten the mask it doesn’t just squish apart. Just a little bit seemed to build up the bridge of my nose just enough to make the mask fit better.
Hmmm……maybe this will work. I know the stoma adhesive paste won’t likely irritate my skin. I’ve used it for more than a decade on my stoma.
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