Oh My! What a week! I'm so thankful that none of this has landed me in the hospital here, because I just got to see what those are like, and what they are lacking! One of our artists almost had a heart attack and I had to take her to the emergency clinic and spent the next couple long days with her there, trying to advocate for her. I'm exhausted, needless to say, and thankfully she was stabilized and able to return home to better care.
While I was at the hospital, my neurologist came by to check on our artist, and he recognized me and asked how I was doing. When I told him how exhausted I've been, with super low energy, he said that was because I stopped the Prednisone too quickly and so my adrenal glands were struggling to function! But he had specifically told me NOT to taper them, that there was no need, and he didn't prescribe a dose that included tapering! AGH!!
Sure enough, I checked my notes here, and the dates (so thankful I had this record!) and right when I was thinking "What in the world?! This virus is the strangest thing ever, not like any I've ever had, and it's suddenly taken a strange turn and I feel AWEFUL!" - that was right after I'd stopped the Prednisone!! I did a little research and Prednisone takes over for your adrenal cortisol production and they stop producing it, so you can't just stop taking it, or else your body crashes. Everyone's body is different and will respond to it differently, but, especially with my history of adrenal insufficiency, I should have tapered... Oh well. There's nothing I can do at this point, since it's been over a month since I stopped it. I just need to keep trying to rest as much as I can and be encouraged that my adrenals are doing as well as they are, all things considered!
People who didn't know my face had been paralyzed don't notice the last bits of muscle control that haven't recovered yet. For the most part now, I forget about it too. I can taste better, but not completely, and I still have areas that feel "bruised". Below compares today to Day 9 which the best record I have of me at my worst. To compare this week's to last week's, check out the full grid of images.
While I was at the hospital, my neurologist came by to check on our artist, and he recognized me and asked how I was doing. When I told him how exhausted I've been, with super low energy, he said that was because I stopped the Prednisone too quickly and so my adrenal glands were struggling to function! But he had specifically told me NOT to taper them, that there was no need, and he didn't prescribe a dose that included tapering! AGH!!
Sure enough, I checked my notes here, and the dates (so thankful I had this record!) and right when I was thinking "What in the world?! This virus is the strangest thing ever, not like any I've ever had, and it's suddenly taken a strange turn and I feel AWEFUL!" - that was right after I'd stopped the Prednisone!! I did a little research and Prednisone takes over for your adrenal cortisol production and they stop producing it, so you can't just stop taking it, or else your body crashes. Everyone's body is different and will respond to it differently, but, especially with my history of adrenal insufficiency, I should have tapered... Oh well. There's nothing I can do at this point, since it's been over a month since I stopped it. I just need to keep trying to rest as much as I can and be encouraged that my adrenals are doing as well as they are, all things considered!
People who didn't know my face had been paralyzed don't notice the last bits of muscle control that haven't recovered yet. For the most part now, I forget about it too. I can taste better, but not completely, and I still have areas that feel "bruised". Below compares today to Day 9 which the best record I have of me at my worst. To compare this week's to last week's, check out the full grid of images.
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