i hear the voices when I'm dreaming

Saturday I noticed my voice was getting a bit rough, but I'd been doing a lot of talking (interviewing potential new caregivers over zoom) so hoped it was just that.

Sunday I woke up with headache, increased voice frogginess, and sore throat. So definitely sick.

Today I took a Covid test and it was positive.

(Sigh)

To be fair, lasting this long without having gotten covid is pretty impressive, especially given the number of people I have coming in and out. And hopefully it doesn't get too much worse. I haven't lost smell or taste yet, haven't had a fever that I know of (I did sweat a lot Saturday night though, and had weird sleep quality; last night was better), and so far (knock on wood) it hasn't gone into my lungs.

The other fun bit right now is I have a new flare up (fop) on the side of my rib cage. Which... I did an ExpressCare video visit to see if Paxlovid would be a good idea in my situation, and some of the questions were things like "can you turn your head okay" (loooool... not since maybe 1994) and "any chest pain" (yes but not from being virally sick). The neurospicy "must be accurate" impulse is hard to fight sometimes.

Anyway. I suspect I am going to be pretty antisocial for thanksgiving... which honestly I don't mind too much

cut for medical stuff around body function

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I know my body is doing the best it can, but.

Drawn art, especially ink style, looks best with varying line weights.

Procreate, the digital art app I use, pairs with Apple Pencil to allow variation based on pencil angle and/or pressure. The handbook says

For example, you can tie brush size to Apple Pencil pressure, so when you press down harder you get a thicker stroke. Or you can tie brush tilt to opacity. So you get a solid line when you hold your brush upright, but that line gradually fades out as you tilt your pencil. And you can go so much further. Associating scatter with tilt or color change with pressure. You can even morph between two different brush textures depending on the input from your Apple Pencil.

These can be set per brush (e.g a calligraphy brush may vary line weight and a pencil brush may instead vary opacity) and also app-wide (changing sensitivity or pressure curve, or disabling entirely).

Here's the problem I'm having: given essentially zero mobility, I can't use the tilt sensitivity at all, because my wrist doesn't move so the angle of the pencil is always changing; and for similar reasons I'm struggling with pressure sensitivity. I can't reliably control whether the pressure at the end of a stroke matches the beginning, and I honestly don't know how much is skill/practice and how much is disability "can't".

Things like brush size and opacity can be changed manually between strokes -- I can do things like "increase brush size and decrease opacity" to mimic the tilt effect, or "do some lines at one size then other lines at a thinner size" -- but that doesn't help give variety within a stroke.

Calligraphy is a prime example for this: standardly, some strokes are thick and others are thin, and maybe you can do a letter like F by "set size to big, do thick vertical, set size to small, do horizontal strokes", but doing an O with separate horizontal and vertical strokes just looks odd.

And I just haven't really figured out how to do thick-to-thin that a) looks good, and b) doesn't involve magically getting more movement ...

At night I have a water bottle hydration tube system set up so I can, well, have water at night. I'm in bed for 16 hours, so it's kind of important.

There's a water bottle suspended from an overhead bar, and a long flexible tube that comes out of the bottle. At the other end of the tube is a bite valve, which keeps the tube closed unless the valve is squeezed into open position by biting down. Without the bite valve, water would just flow out onto my bed, because gravity.



Standard procedure used to be that during the time I was in bed but awake, I'd just chill with the bite valve in my mouth, drinking when I wanted. (Adhd tip: it's a lot easier to hydrate if the water is right there. I did a fair amount of "automatic" drinking.)

At the beginning of the FOP jaw flareup, I couldn't fit the (1.5cm) bite valve between my front teeth. Then I could. Then I couldn't, unless I wedged it in from the gap where I had a tooth removed. Then I could but it hurt to transition between in/out (so I was ok with it between my teeth but getting it in hurt and pulling it back out hurt).

Today, the problem is swallowing.

The only position I can be in, in bed, is on my back. This is not great for swallowing, but until now I've been able to do it fine. Now, if my jaw is open at all, I cannot swallow properly; part of it tries to go down the bra thing tube. (I suspect the bone growing under my jaw is pushing things out of alignment so the mechanisms don't work the same.) If I close my mouth, it's easier, but I still have to concentrate.

So now, to drink, I have to: put the bite valve between my teeth, bite, draw out a mouthful of water, take the bite valve out, close my teeth together, and swallow.

It's... slow and frustrating and so new that I *keep forgetting*, which so far only means annoying coughing fit.

Sigh.

CW food, diet, medical advice

#

Last week I spoke with one of the FOP specialists, an endo in SF, mostly about the flareup but also various other things, both FOP related and endocrinology related. He said among other things that I should consider myself as probably having osteoporosis, because it's common in older FOPers, especially ones who aren't doing any weight-bearing exercise.

He then suggested-- I'm not sure if this was for osteoporosis or for blood sugar or for other things I'm high risk for because sedentary, that I should evaluate my caloric intake and "drop it 5-10% across the board".

...I'm so fucking not doing that.

Should I? Maybe. I don't know. I'd still be at risk of the same shit, and I'd be hangry and miserable. But also it's fucking hard getting myself fed regularly / appropriately; adding in trying to measure calories even with no change would be halfway impossible.

And, like, what I have now isn't vast quantities of all-you-can-eat buffets or whatever. Breakfast is either two eggs with bread (form varies, sometimes includes cheese) or yogurt with granola; lunch is a peanut butter sandwich or similar; dinner is whatever my roommate makes, usually pretty consistent with the "half plate non-starchy veggies, quarter plate carbs, quarter plate lean protein" stuff they've drummed at me for years. I could calorie count the first two if I measured. Dinner is more complicated.

...and the last several days I've also been hungry a lot, both during the day and at night. This could still be prednisone effects, although I'm almost done with the taper, but hungry at night is pretty common for me. I can't get up and snack, and I don't like bothering people, so I've learned to just ignore it.

But the doctors don't know this and don't care. I weigh too much and I can't exercise so the only ~lifestyle~ change is diet.

I want to eat things that are bad for me. Cakes and cookies and brownies and pizza and bread and rice and pasta and butter, things that taste good and fucking satisfy me. I feel childishly petulant that don't even get credit for things I'm doing; it's not good enough, never good enough, unless I lose an "acceptable" amount of weight.

(Sometimes I want to just stop eating, insist I'm not hungry or something, ~don't worry I'm fine~. Except I hate being hungry and I get in rotten moods. I think it's more that choosing to refuse food is one of the few freedoms left.)

Prednisone seems to be helping some-- swallowing is less uncomfortable, at any rate. There's a persistent feeling of pressure against my throat, like the beginnings of a panic attack, but I think I'll adjust.

Chewing is still exhausting so I'm trying to go for soft foods. I did have a friend (mom of a childhood classmate) bring over some homemade congee that was basically chicken noodle soup but with rice instead of noodles and with the chicken and carrot and onion shredded down and cooked down ... it was amazing.

My in-bed water system is possibly in need of change but I don't know how. It's a water bottle plus long hose with a bite valve on the end. I'm used to just having it rest in my mouth, bite-suck when I want water, and otherwise just resting in range.

But now ... The bite valve is slightly larger than my teeth can open; I can get it wedged in ok, but it's slightly uncomfortable (plus awkward swallowing with my jaw an inch open). Plus I end up guzzling the water all at once, which I'd rather not do.

I can't have a bare tube because it will just drain into my mouth nonstop. And I can't reach my hands to my mouth, so twist valves at the mouth of the tube wouldn't work. (Of course they're not made with an easy valve in the middle...)

I don't even know what I looking for. Sigh.

Feeling mopey about 1) how much time sleep takes, and b) not being able to move.

1 -- I don't do well if I stay up past midnight (I get up at 10am) but lately I've been needing afternoon nap and/or going to sleep at like 9 (which usually functions as a nap and then I'm awake for another hour or so) and still I rarely feel energized and I get hella tired in the afternoon.

(Today I ignored my body's signals and stayed awake so I could Do Art, and I have a half finished bee drawing and am a crying mess.)

2 -- there are the big things, like missing knitting / xstitch / origami / writing by hand / etc, but sometimes it's the little things. like not being able to scratch itchy spots, not being able to blow my own nose, not being able to clip my fingernails. I can get people to do these things but it's not the same at all.

also the art app I use has lovely features that I can't use because -- brushes can change size or opacity or color based on pressure and on pencil angle (if using an Apple Pencil) so there are art tutorials on YT where they do a nice shading effect by tilting the pencil differently. Except I don't move my hand so the pencil angle changes constantly, plus pressure is harder to control

Also also I need to find a way to prop my iPad up an inch or so when I'm in bed because right now my stomach is in the way of the bottom edge and while I can prop the iPad up with one finger, one joint of said finger is one of the few which has more of a hypermobility problem than immobility and the weight of the tablet plus the angle my finger is at is just enough to bend it backwards ow.

(Maybe I should go sleep...)

Been a while since I posted (oops)

Summary of life:
* 2020 is still 2020.
* I did have successful, albeit quiet, birthday. (Turns out 42 is not a magic age with all the answers.)
* I have a new game addiction (Yoshi's Crafted World) and it's way too much fun.
* My computer died for no particular reason so I have been computerless for eons (since last Thursday). Still have internet through phone and tablet, so I'm not in withdrawal, but it does kinda suck
* pets and niblings are all still hella cute
* brainweasels still savage as duck. Or maybe goose. (Duck was an autocarroting but I decided to keep it)

Um yeah there's probably other stuff but I can't think.

Jedi hugs to anyone who wants them.

1. 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...

Several of my Ravelry forums have a thing where you can declare "thread bankruptcy", usually with fast moving chatter threads, which basically means "I'm so far behind on this thread that I have no chance of catching up so I'm just going to start reading/interacting here, and I know I may have missed things but I'm not ignoring on purpose"

I realized that part of why I have trouble re-engaging with Dreamwidth peeps is that I'm so far behind (at least a year now, aside from random spurts with individual journals) that the backlog is overwhelming, but I feel obligated to catch up old stuff before I start reading regularly. But there's no way I'm going to catch up with everyone I care about.

So I'm declaring "Dreamwidth bankruptcy". I'm going to pretend there is no backlog, and just start fresh.

If there are things that have happened in your life that you want me to know, or that is important in your life, please comment! You don't even need to go into detail (if you give me clues of when to look in your journal, I don't mind specific archive-diving). I care about y'all, even though I've been quiet 💜

My version of catching y'all up--

Health

I have new bone growth in my back, which is slightly changing the position of my left arm -- there wasn't any mobility in any of the joints (shoulder or elbow) but there was some amount of flexibility in the shoulder blade, and that's changed so my arm is somewhat more retracted. It makes things like holding my choir iPad, or crocheting and knitting, harder and more awkward.

(It's also painful, especially when it presses against the chair back or the sling I use for transfers. My right hip and thigh are also super cranky because of bone buildup. Turns out having lots of extra bone where it doesn't belong tends to be painful, who knew.)

I also had a really craptastic couple of weeks starting just before Thanksgiving. I don't know how much was FOP, how much was atypical stomach bug, how much was maybe atypical migraine, and how much was atypical UTI. Details, including some amount of tmi, under cut...

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Teal deer = the last month or so has SUCKED healthwise. But I'm alive, so yay.

Pets

Fur family is still good, even though they're getting older -- both Yahtzee and Monkey seem more inclined to snooze than be active. Loki is a dork face, as per usual.

And speaking of: I'll do a proper post about this, but I am getting a puppy (PUPPY!!!) to train up as a new service dog. Er, obviously I can't do puppy myself, so am hiring a puppy raiser + trainer, but it's super exciting. Litter is eight weeks old, English (cream) golden retriever, absolutely freaking adorable.

Other stuff

Mental health issues (depression and anxiety) are still problems, though Impending Puppy is a decent antidepressant (except when I'm being anxiety-flaily about all the things that could possibly go wrong). And I've found a new phone app, Woebot, that is a robot that does CBT exercises with you; it's pretty awesome.

I somehow managed to maintain my Duolingo streak even with being sick (there was one day I missed, but streak freeze caught it). It's a crazy high streak. I'm mostly just idly refreshing Spanish, but not with any major effort.

Haven't done much crocheting or knitting lately. (Scary thing about zombie week: I was so sick I didn't care about yarn. Not just didn't have the energy to even fondle yarn, let alone work with it, though both those were true, but didn't even care about it. I'm pretty sure someone could have come taken my entire stash and my reaction would have just been "...whatever". Of course, I'd've been pretty miffed once I recovered, but.)

Haven't done much writing, either, though a few of my story wips (especially "no-magic-cure variant of Secret Garden" and "disabled Beauty and autistic Beast") are still rattling around in my head.

And ... um ... think that's it. Cookies for anyone who read the whole thing!

What's up with y'all?