i hear the voices when I'm dreaming

The pain when breathing is improving: there was only the one night of lost sleep, the pain now mostly occurs on deep breaths only and is like a 3 on pain scale. Ended up going to urgent care on Monday (in retrospect going Sat would have made sense, but deliberately didn't go Sun because I didn't want to miss gaming) and got chest X-rays that ruled out some of the scarier options. It seems to just be a Bodies Do Weird Shit, Yo category thing.

I keep having moments of "why am I so tired" (especially around 4pm-8pm) and then remember ... missed a whole night's sleep and also pain is draining and also 2h at urgent care is hard especially when you are sleep deprived and hurting and having to be your own advocate.

Anyway now my jaw is being cranky on the left side and I hope it's not the start of anything big. Bodies, what can you do, amirite.

1. Realization: my perfectionism may be an ocd-ish thing (a belief that being perfect prevents bad shit from happening) ... which is self-reinforcing because life includes bad shit and also me being perfect is impossible

2. I miss being able to do counted cross stitch. Also knitting.

3. There is a line between acknowledging the reality of sucky situations (good) and brainwashing yourself into keeping that as normal (bad) and I don't know where that is.

4. My brain really wants a mashup of "I want a hippopotamus for Christmas" and the House Hippo PSA (and maybe also the #yuletide discord and the hippos there) ... only I don't know how to write that

5. I did a few art-y things but the image upload process here is annoying, bah. (One thing I miss about ravelry is the streamlined image upload.)

wow my body hates me

still sick-ish (but got on paxlovid), but this morning I woke up with carpal tunnel issues in my right wrist. no clue why but it's painful (6-8 on pain scale) to tuck my wrist in or use thumb / index / middle fingers.

...guess what motions I do a lot...

luckily I mostly use left hand for computer stuff, but right hand does chair joystick and other things

sigh

Saw doctor yesterday. Confirmed that it's not covid, flu, RSV, or strep (the latter seemed lsss likely but why not test). Which means... unnamed crud.

Of course my sinuses waited to get involved until hours after telling the doctor they weren't. lol? Thank goodness for DayQuil. Nasal congestion is especially shitty when you can't blow your own nose.

Right now every time I exhale it makes noises that almost sound like velociraptors. It's distracting. I'm supposed to be trying to sleep but augh.

I'm also grumpy because I'd had a ticket to see Fiddler on the Roof tomorrow (local production) and I was really looking forward to it ... but going would be a bad idea for several reasons. I know there's a movie but it's not the same.

Instead I'll probably just binge watch something like The Good Place or Brooklyn 99 or... idk... Bluey...

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.)

CW: food, dieting, self harm

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gah

want my robot body already

::falls over exhausted::

IFOPA (international community of people with fop and their families and also researchers and generally anyone involved with something fop-related) is having virtual conference this weekend (today tomorrow Sunday). Much zoom. Much videos. Much exhaust. Headache for half of today. Really wanted booze but it seemed like bad idea given headache.

Trying to walk my mom through figuring out whether she’s gotten a Facebook invite that she's expecting, didn't help. I had the foresight to say I wouldn’t be available for tech stuff during any of the sessions, so she just ambushed me afterwards instead. I always make the mistake of thinking it's just one quick thing to answer, then it turns into a whole saga of trying to figure out where she is and what she's seeing and it's just a pain. And she also wanted me to report on how my convention sessions went and what all did I learn and argh.

Also at least half my aides are going home for thanksgiving. Which is very annoying.

I'm generally indifferent about thanksgiving in general (the food is yay but no reason to limit it to one Thursday; the pilgrim-Indian-BFF narrative that modern thanksgiving is based on, that I grew up learning in school, is a thin cutesy veneer over a stegosaurus-sized pile of steaming 💩 that is the actual history, so I can't enjoy that and don't want to celebrate it; and I'm hella introverted. So I usually do tday stuff with my mom because it is hella important to her, but because COVID I'm not comfortable sharing a meal (I'm probably one of like twenty Americans following cdc advice lol). My introverted ass is quite okay with that.

But having aides gone is simultaneously annoying and understandable. I can't make them not want to do thanksgiving with their families, even in pandemic, but I don't magically stop needing to pee on holidays. And this year it's not just gone for the weekend, but a bit longer because COVID testing and quarantine buffer and such. I don't really have much leverage to say "no you can't go"; I can tell them it's inconvenient but if I say "you can't go you have shifts" I worry that they'll just up and quit, and then I'll be even more up a creek.

(also whyyyyyyy does my tablet keep all-capsing COVID argh)

::keels over in utter exhaustion::