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May. 28th, 2020 10:57 pm1. Not dead. This seems more relevant a disclaimer given pandemic.
2. Am, however, having a FOP flare up in both legs -- down the sides of both thighs but also under the right thigh and pelvis. The last six days have been miserable during the day, in that there are NO comfortable positions to sit in. I've been tilting my chair back enough that my calf is starting to hurt from the pressure (the edge of the seat presses against my leg, in part because the seat pan is *too fucking long* because the wheelchair people ~didn't like~ how unsupported my legs looked in a shallower seat). It's also made dressing harder; I used to be able to "sit forward" on the edge of the seat and balance there, ao my torso and arms were free of the seat. But now I can't really balance and keep tipping over backwards -- not a dangerous thing because I'm just ending up in the chair, but I can't stay upright unless my left elbow is against the chair arm, but that means that trying to get my shirt on might end up giving me friction burns there. Argh. Also, pain fucking sucks.
3. On the bright side, thanks to some very generous friends, I currently have both an Oculus Go VR headset (I can't get 100% use because I can't turn my head, but turning my chair has the same effect, as long as I have someone around to let me know if I'm close to running into anything; one of MyChart favorite games is a roller coaster app. All the fun visual effect of roller coasters with no risk!) and a Switch with Animal Crossing (which I only got this week so it's not a spectacular island), so there are things I can do to distract myself from the pain.
3. I have a long and kind of teal-deer post to make on this subject but summary is I'm becoming really fairly certain that I'm somewhere on the (autism) spectrum, with a lot of masking going on. A lot of stuff from my memories suddenly make way more sense from that angle. And it makes it easier somehow to not beat up on myself for failing at things, because it's brain wiring and not me being lazy or whatever.
4. I miss having choir, so fucking much. I did send in a video submission for http://www.virtualchoir6.com (which is currently in the processing stages, and will probably take a while because they have 17.5k videos to smush together), but a) I strongly dislike videos of myself, and b) it's not the same. I don't even know if the choir I'm in will start back up in the fall ... and if they do I don't know if it will be advisable for me to avoid it (I don't think I'm high-risk for *catching* Covid-19 but if I get it there's a good chance it'll kill me, so I'm trying not to get it) ... but damn I miss it. Also miss orchestra stuff, even though I haven't been able to play violin in like 20 years. Some of that may be because I've been watching way too many two set violin videos, but. I think more it's just missing communal music.
5. I'm an aunt again! My sister had another baby, another girl, who is all of like three weeks old right now. It was a bit more complicated trying to juggle everything given pandemic, which she hadn't been expecting when she got pregnant, but everyone got through it with all bits intact. Oddly, there are fewer baby pictures this time than there were when her first was born 🤣 almost like she's busy or something.
6. I have been eating way too much sugar and carbs. I should probably cut back, but it's so yummy...
2. Am, however, having a FOP flare up in both legs -- down the sides of both thighs but also under the right thigh and pelvis. The last six days have been miserable during the day, in that there are NO comfortable positions to sit in. I've been tilting my chair back enough that my calf is starting to hurt from the pressure (the edge of the seat presses against my leg, in part because the seat pan is *too fucking long* because the wheelchair people ~didn't like~ how unsupported my legs looked in a shallower seat). It's also made dressing harder; I used to be able to "sit forward" on the edge of the seat and balance there, ao my torso and arms were free of the seat. But now I can't really balance and keep tipping over backwards -- not a dangerous thing because I'm just ending up in the chair, but I can't stay upright unless my left elbow is against the chair arm, but that means that trying to get my shirt on might end up giving me friction burns there. Argh. Also, pain fucking sucks.
3. On the bright side, thanks to some very generous friends, I currently have both an Oculus Go VR headset (I can't get 100% use because I can't turn my head, but turning my chair has the same effect, as long as I have someone around to let me know if I'm close to running into anything; one of MyChart favorite games is a roller coaster app. All the fun visual effect of roller coasters with no risk!) and a Switch with Animal Crossing (which I only got this week so it's not a spectacular island), so there are things I can do to distract myself from the pain.
3. I have a long and kind of teal-deer post to make on this subject but summary is I'm becoming really fairly certain that I'm somewhere on the (autism) spectrum, with a lot of masking going on. A lot of stuff from my memories suddenly make way more sense from that angle. And it makes it easier somehow to not beat up on myself for failing at things, because it's brain wiring and not me being lazy or whatever.
4. I miss having choir, so fucking much. I did send in a video submission for http://www.virtualchoir6.com (which is currently in the processing stages, and will probably take a while because they have 17.5k videos to smush together), but a) I strongly dislike videos of myself, and b) it's not the same. I don't even know if the choir I'm in will start back up in the fall ... and if they do I don't know if it will be advisable for me to avoid it (I don't think I'm high-risk for *catching* Covid-19 but if I get it there's a good chance it'll kill me, so I'm trying not to get it) ... but damn I miss it. Also miss orchestra stuff, even though I haven't been able to play violin in like 20 years. Some of that may be because I've been watching way too many two set violin videos, but. I think more it's just missing communal music.
5. I'm an aunt again! My sister had another baby, another girl, who is all of like three weeks old right now. It was a bit more complicated trying to juggle everything given pandemic, which she hadn't been expecting when she got pregnant, but everyone got through it with all bits intact. Oddly, there are fewer baby pictures this time than there were when her first was born 🤣 almost like she's busy or something.
6. I have been eating way too much sugar and carbs. I should probably cut back, but it's so yummy...