i hear the voices when I'm dreaming

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.)

So fucking exhausted and frustrated-- kinda at "bang head against wall" mood, though I didn't actually.

My sister and niblings are in town for a few days. She's moving here in a few months (yaaaaay) so had stuff to do with finalizingt house purchase etc. It's the first time seeing any of them since January 2020.

...it's been a chaotic few days.

Theory: they'd drive in Tuesday and stay through Sunday.
Reality: hotel reservation shenanigans mean leaving Friday; packing took longer than expected so by 11pm Tuesday the new plan was for them to get up hella early Wednesday.

Theory: my sister had arranged babysitters so that e.g. in the afternoon babysitter 1 could be with youngest kid for nap time, babysitter 2 could be at park with older kiddos and Aunt Me, and my sister could go tour a daycare. Or a babysitter could do dinner with kids while my mom and sister and I went somewhere for Adult Time
Reality: both babysitters canceled last minute (one sick and one exposed) and the kids were melting down and hyper, so my sister was stuck at the hotel getting nothing done except for keeping any of them from killing each other. Needless to say, AT dinner didn't happen.

Adapted theory: I'd go over to the hotel for a bit and say hi, maybe if I'm lucky get a hug from Youngest (who has never met me)
Reality: Eldest was absorbed in Minecraft when not fighting with Middle, who was running around turning the lights on and then off and then on and then off, and while Youngest decided my aide was her new BFF (complete with tears when we left), I didn't merit anything.

Theory: today we'd get together for dinner, probably pizza in the hotel.
Revised theory: pizza in the park, because a friend of my sisters (B) has a kid (O) who was umpiring a softball game (players mostly 7) and invited her to come with Eldest to watch the game and see if Eldest would be interested in softball. And B was okay with it turning into all the kids plus mom and sister and pizza.
Reality: ...oof where to start.

It was cold and hella windy, and I wasn't dressed right.

The pizza places had like 90+ minute wait and also didn't deliver to parks, just street addresses, so plan changed to doing pizza after, but my mom and I didn't find out until we were there

My mom drove me so I couldn't bail without dragging her away

Eldest was more invested in ladybugs than the game

Also. I usually eat dinner around 6, go to bed right after (for comfort), toilet again at 8:30, and then am in bed for good, though sleep time varies. We didn't leave for the park until 5:45. We didn't leave *from* the park until 7. I didn't get into bed at all until 9:20.

Also my mom wanted to stop ON THE WAY at CVS to pick up meds. I said sure but probably not in a very cheerful tone, and really wanted to bang my head against a wall and/or make unhappy shrieking noises. She didn't stop after all.

(do normal people get bang-head-on-wall urges, or is that another mark in the "maybe autistic but well masked" column?)

It is better now that I've eaten pizza, am in bed, and have had an edible. But aaaaahhhhhhhhhhhhhh.

You know the shitshow that is Ravelry's new look? Which was causing eye strain and migraines and seizures? And the site updates since then have all used perky icons (that are in some cases impossible to determine the meaning of) rather than bullet points?

It just got worse.



I'm shaking too hard to transcribe, but summary -- form letter response from Cassidy saying NuRav isn't causing medical issues, people are just spreading malicious lies.

Or, as ktb38 says:

Ravelry is now sending out a form letter.
Saying there are no problems with the updated design.
Everyone who has problems is lying.
The disability community is lying, according to ravelry.
Share this. Tell everyone what ravelry is doing.
#ravelryaccessibility #ravelry


I'm pretty much in shock right now. Of all possible responses from C, this was not even imaginable.

I fully expect rage tears later, but right now I'm just ... numb.

Edit with transcript:

Ravelry's updated design does not cause seizures, migraines or other medical issues.

The Epilepsy Foundation did not "call out" Ravelry. Angry users stared [sic] a letter writing campaign and the foundation published their warning based on these letters without any verification or research, as appears to be their policy. A medical doctor who specializes in migraines and seizures has said that he does not believe that Ravelry is causing seizures or migraines. We have found zero evidence that there is anything about the new design that causes migraines or seizures.

I would like people to consider their sources before spreading false information.

Cassidy

So ... Netflix has a new-ish show, Afflucted, that I've been waffling in whether or not to watch. It advertised as a documentary following people with chronic illnesses. I wasn't sure, in advance, whether it was going to be sympathetic or dramatastic.

It's the latter. In a "oh it's all in their head" way. And it deliberately twisted the stories of *everyone* involved, who were misled about the purpose of the show (documentary ga reality tv) and were basically abused by the production staff.

https://medium.com/@afflicted/the-truth-behind-netflixs-afflicted-92e92d32cd7c is worth reading. If links to essays written by the participants, detailing the experience and also the facts that got left out about things like, oh, say, actual diagnoses and actual medical info and actual *everything*.

I am Not Impressed.