i hear the voices when I'm dreaming

Really want to do a full update because there's so much, but typing hurts. Can do short bursts, but since DW doesn't save drafts...

Teal deer:

* Had birthday last week, was good.

* Yahtzee had eyelid surgery, it went well, he's healing well, doesn't like the Cone but loves the extra "treats".

* Eldest niecelet is 8 wtfffff how did she get old

* twitter is ... certainly a thing right now. It's got the feel of "deck of sinking Titanic" only the iceberg bought the titanic as a midlife crisis and also is super mad everyone is making fun of it.

* but also twitter was where my "on rav all day" energy went, when TPTB torpedoed it, and I'm not sure what now

Fingers hella hurt now, okay bye

Had a video chat with my primary care doc.

In her perception of the world:

* doctors always look for signs of autism and adhd in children
* it is rare if not impossible for anyone to get through school without all appropriate diagnoses
* this includes dyslexia (oh my god the skepticism in her voice when she was telling me about another patient of hers that ~thinks she has dyslexia~ despite having gotten ~all the way to grad school~)
* adhd meds are stimulants and work the same way on all brains so giving adhd meds to an adhd person will cause more problems than it's worth
* because I am not in school and do not work, there is absolutely zero reason to pursue a diagnosis
* (when I pointed out that it's not just a matter of "I can't do things I need to do" but "I can't even do things I WANT to do" she said that it would be ridiculous to put me on meth so I can watch a movie)
* adults with adhd don't take meds anyway, except maybe as-needed if they're in an exceptionally stimulating environment
* I am only having these problems because of increasing physical limitations and also anxiety (even though I've said several times that the behaviors and thought patterns go back to childhood, pre-dating even the existence of my depression)
* my existing diagnoses (FOP and anxiety) are all I need to get adequate support (ahahahahahaha)

I just ... ::flails incoherently::

Oh, and she was baffled by the hostility (actually desperation) in my responses because her telling me all this was just her, like, explaining the roadblocks I might face, and she's just the messenger. Even though none of it was phrased as "you might get resistance because xyz", it was all "xyz is absolute fact and also your needs don't matter because you don't work"

She's usually really good about stuff. Just ... not this.

A thing I saw on Twitter has me writing again -- fuck knows how long it's been -- but I'd forgotten how hard writing is. I don't just mean in the usual sense, though there's that too. I mean the physical act. I'd forgotten, by which I mean I'd avoided thinking about the fact that what keeps me quiet on my blog would apply doubly to stories.

I can't hand write (that's been the case for years). I haven't figured out a good way to type on a standard keyboard, so writing on the computer is done via mouse and on-screen keyboard. Slow and prone to typos. On the phone I'm faster but there's still lots of errors and autocarrot issues. And on the tablet, which I'm currently using, it's old enough that it has issues recognizing taps sometimes. Which means that I have to type basically twice as much.

For example, the opening line

Truth is as liquid as the ocean, and twice as deceptive.

actually involves this amount of key-jabbing, using \ to indicate backspace and leaving (usually auto fixed) typos un-corrected:

Truth\\uuutth is as iwuid\\\\\ lllliquid as tge\\he ovean, annnnnnnnd fwice as deceotiiive

...which is slow and frustrating and actually not good for *getting words out*.

But hey, I have the opening (checks) five paragraphs, and it only took half an hour.

February is sucking so hard, so far.

Sunday night: aide called in sick. I got her shifts covered.

Monday: *deep breath* lessee. A different aide let me know she can't do Thursday nights any more. I had the *stupidest ever* appointment that required an hour total of driving, and fifteen minutes of waiting, just so that they could confirm that my cpap machine, which has been giving "motor life exceeded" errors, had in fact exceeded the recommended motor life. (It's normally replaced every five years, and I'm 9 months short of that, but I'm in bed 14-16 hours most days, and the cpap is running the whole time.) They didn't replace it (this was one step in the process of getting an early replacement) but it was complete BS.

And then there's the Chess saga, wherein he had to go in for surgery for intestinal blockage that turned out to be a *foot long stick* wtf I can't even fathom how he got that down. And while they were doing the surgery they discovered that it had rotated in a bad direction and punctured his stomach. So ... not good. He stayed in ICU overnight, and will be in the hospital a few more days, but full recovery will take longer. He IS doing better now, eating and wagging his tail and rolling over for belly rubs and generally charming everyone there.

(The trainer feels horrible about this, which on the one hand I can completely understand, and puppies will puppy and things happen and she didn't do this on purpose, but there's also a part of me that's like "(grumpycat) GOOD", because augh. SHE BROKE MY DOG, only not really, and he IS healing and it will be okay, but... yeah. And of course this is not going to be cheap (per the contract, she covers basic vet stuff and wellness checks and shots, but we cover any emergency issues) but more I'm just ... flaaaaail.

And Monkey has a UTI and has to get oral antibiotics, which means she's spending lots of time in impossible-to-reach places; and Yahtzee has something going on with his eye that needs him to go to an animal ophthalmologist. Both of which are technically January things but they're affecting February. And the ophthalmology guy my vet recommended had an appointment at 9:30 Friday morning, and is otherwise booked for a month out (the Friday thing was a cancellation), but he's half an hour away WITHOUT factoring in traffic, so I'm going to have to get up hella early compared to my usual.

Today: Got an email from Netflix that was all "we have changed your email as requested; you will no longer be able to use (email) to sign in. If you didn’t request this, click here to contact us". Felt very phishing-y, so I didn’t click on anything in the email. But I did go to sign in just to make sure I still could. And ... "we couldn't find an account with that email address". So I had to call them (still not clicking the email link because paranoid, but found their contact info a different way) and after confirming the last 4 digits of credit card to prove it was me, they changed my email back and sent me a reset-password link. Did that and also linked up my phone as a secondary source of authentication. But fuck, have no idea how someone got into my Netflix account...

...

I ... may be consuming rather a lot of sugar and carbs, the last few days. Stress eating. Not good for my body probably, but good for my mental health.

I'd really like things to *stop sucking*.

I had a longish entry almost written up

and then Loki came onto my chest for snuggles so I got out of safari so he wouldn't muck things up

and then I went back in and it did the "I will helpfully reload the page for you!!!11" bs

which means I lost the entire fucking thing

fuuuuuuuuuck

(I wish DW had a draft autosave feature)

Edit: considered trying to rewrite it but am st the end of my stamina both for typing and for staying awake -- but by tomorrow I'll have forgotten. Gist in summary form:

1. Thunderstorms today, whee. It's weird to have thunderstorms here in any season other than winter, and the last few days have been abnormal -- cold (low 60s) and rainy instead of too-warm (80s-90s) and dry -- but I like the smell of rain and the look of rain and the sound of rain and the sound of thunder, and I prefer cool to warm, so this has been lovely

2. Still can't find the fic. Did, however, dig up stuff I'd forgotten I wrote, everything from flashfic to wips, from complicated plotty things to porn (mostly white collar, Star Trek AOS, and lots and lots of xmfc) to origfic to poetry

3. Is it weird that I want to self-publish a book of poetry? I don't think any publisher would want something like that from an unknown, plus I can't go on publicity tours or anything, plus I don't really have an established following, plus income is complicated when it comes to IHSS benefits, but I sort of want to do it anyway idek

4. I have gotten very melancholic since going to bed about how I can't write any more. Don't know how much is physical can't (the entry I lost was much longer and more eloquent, and that plus this is pushing the limits of a session) and how much is mental can't and how much is scared-to and how much is laziness and how much is just that I don't. And I miss it: miss the stories (especially in college and the few years afterwards) that just wrote themselves, miss the glee that comes with writing something that comes out awesome, miss the feedback of people liking what I wrote (never mind that in the past few years, positive feedback on stories sends me into an embarrassed flaily panic with a strong need to hide). Miss the needy flush of being in love with a new fandom (especially xmfc), writing all the things even if you're kind of writing the same basic story over and over but it's like an addiction. Miss the sense of community. Miss *being* someone. I might not have ever been a BMF but I felt like I belonged.

...that's all gone and I don't know how to get it back

I still have things I wish I could write -- the Secret Garden fic where Colin doesn't magically get all better; the Beauty and the Beast thing where I fix, er I mean remix, the live action movie; the non-Disney BatB variant with an ugly Beauty and autistic Beast; the Stargate AU where Jack got taken as a host for Apophis, which started as a single fic where the Daniel from that universe and the Daniel from ours get plonked into the wrong universes, but then expanded because my brain wanted to work out how stuff in the other universe happened; several very tenacious XMFC fics; there may be others as I unearth them. But I don't know that I can.

5. Yes, that was the short version.

6. Yes, I'm wallowing in freakish misery. I'll get over it, maybe. I just ... right now there's so much I've lost (cross stitch and heading and easy knitting and writing (especially by hand) and *not fucking being dependent for everything*), so much I worry about losing (finger mobility is decaying, jaw might lock up, parents are getting older, pets are impermanent and I'm pretty sure losing Yahtzee will destroy me), and so much stressing me out (need to find new roommate again, need to find/train new aides, need to consult with a dietitian nutritionist type person because I'm officially prediabetic and I'm torn between "changing diet will help with that" and "duck you I'll eat what I want, it's not like I'm likely to die of old age anyway" with a soupçon of "but i don't WANT to give up carbs" plus paranoia about being thirsty or about needing to pee) that misery seems to be a default that's hard to break out of.

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.

I am less enchanted with memrise than I was initially.

Some issues:

a) On the iPad, some of the font is way too small, and selections tend to be underlined. This means that (for the Spanish course) i and í and l and t and ! and ¡ all look alike, and because of the underline g and q look alike, and (for the Japanese course) any kanji more complicated than the basic are impossible to "read" and I end up guessing from what's available. There is no option to enlarge. There's also ridiculous amounts of white space that could be used for ... oh I dunno, maybe larger font.

(yes the iPad has a zoom feature, but then I'm having to scroll all around the screen, or zoom and unzoom and zoom and unzoom.)

b) On the computer, there are two review methods; speed review, presumably timed, and classic review. Which is ... also times. Not in the sense of "you have an hour before the session times out", not (just) in the sense of "you get extra points for completing quickly", but in the sense of "15 seconds to answer each question *or you get marked wrong*". With a mouse and onscreen keyboard I can't always type quickly enough, much less if I have to think to recall the answer. I could live with "bonus for completing within 15 seconds", but even if you're typing it will mark you wrong once time is up. There is no non-timed recall through the computer.

c) Punctuation is erratically mandatory. One of the sentences it teaches is "cheers!" In Japanese, this is ikō ... except they have it as ikō! with the exclamation mark. Similarly in Spanish, "let's go!" is ¡vamos!" You will get marked wrong for just "ikō" or "vamos". Which is kind of wtf.

d) There are weird unexplained jumps. It made sense to learn "watashi" (I/me) and "no" (possessive particle) and put them together to get "watashi no" (my), then learn "namae" (name) and do "watashi no namae" (my name). And then they jump to "悲しんでいます / kanashindeimasu" (being sad) without having introduced sad, or talked about the difference between imasu and desu, aside from lumping them together as "politeness particles"

e) They don't reinforce kana spellings of kanji. So they teach that 幸せです / shiawasedesu means being happy, but they never review it as しあわせです, and I can memorize that the kanji 幸 corresponds with happy but then they do the audio "shiawasedesu" and I go "...baroo?" Especially since I can't see the kanji all that clearly.

There are other issues too, but those are the main ones. And I'm kind of disenchanted. I think I need to find a different source for learning the grammar, and stick with wanikani for kanji -- you have to pay after level 3, but I can probably wheedle a sub as a birthday present this year, and anyway I'm only on level 2 -- and ... I don't know. Something.

To start with: I have messy desk/table/etc surfaces. I know this. It's kind of obvious.

I also tend to have things wander off -- usually when one of my aides either moves it or uses it but doesn't put it back.

One of my daily medications is a sublingual film; I have a set of basically long tweezers that is dedicated to getting the (small) piece of film to the bottom of my tongue. Some aides use the tweezers, some use a spoon, some use their fingers.

The tweezers got left out on the table rather than being put back with the med stuff, a vase of birthday flowers ended up in front of them. So the weekday morning aide couldn't find them.

Instead of asking me, she decided to use a similar pair of tweezers on my computer desk. Ones that I use for crafting, and for clearing built-up gunk from the crevices around the outside of the ear, and other such things that make them not ideal for things that go in my mouth.

I told her that, for future reference, I had unused and therefore cleaner pairs of the tweezers.

She fucking laughed, and said something like, "I'd make a comment about being able to find them, but..." and giggled again.

😤

Later it occurred to me that I could have said "I'm glad you didn't say anything then, because that would have been rude and improper as well as incorrect".

What I did do is look at her unsmiling, turn around, call her over to the desk, and point at the pencil cup that has not one but TWO such tweezers. ...no, three; one is disguised with the microphone cover.

Best part is, once I actually looked where I said the tweezers were ("they're on the table." "I couldn't find them." I wasn't awake enough to articulate "behind the flower vase" but that was the first place I looked, they were ... on the table, behind the flower vase but right near my water cup.

...I'm not mad that she wasn't able to find them. I'm mad about the snotty comment and the fucking laugh.

Weird thing is, if it had been my roommate saying something, it would have been fine. I think it has to do with "laughing at" vs "laughing with". My roommate and I have a running joke of "where did $aide put $thing this time", and any humor is in how things wander off. With this aide, it came across as "you are a pathetically disorganized person".

I'm thinking of leaving the tweezers where they are with a trail of post-it notes. Probably won't -- this exact circumstance is unlikely to happen again -- but mrrrr.

I have for whatever reason been on a horror movie kick lately. Because sometimes it's fun watching people be horribly surprised when a ghost summoning in a haunted mansion goes horribly wrong or whatever. Especially when they do stupid stuff along the way.

One movie had a somewhat satisfying ending (bad guy gets trapped in a room rull of angry ghosts of people that were killed as a result of his douchenaggery!) in a way that was completely antithetical to the setup (spooky ghosts that were scaring the protagonist and family, are ... suddenly friendly to her wtf).

But the one I just finished watching makes me want to *kick things*. And I don't know what's worse, the fact that it was written this way or the fact that I saw it coming.

CW: anti-autism wtfery. Also spoilers for unnamed movie.

( Read more... )

That beauty and the beast project I'm playing with? I keep being tempted to make the Beast autistic, and the enchantress or fairy or whoever cursed him into beast form just totally misread him (or he said something true but impolite and pissed her off) and is an asshole for what she did, or something.

I worry about doing it wrong, because -- as much as I suspect I have some aspergers-y traits, I am totally not autistic, and risk falling into cliches -- but at least I wouldn't be *points upward* THAT fucking wrong

sunday overnight - bed (alternating air mattress) goes off for 10 minutes for no apparent reason

monday - neck is cranky, possibly wrenched muscle

monday night - pain spikes to 8. take painkillers and go to bed early with heat pack (microwaved not electric)

tuesday - pain only 6, ditch church meeting to repeat prev night's actions

wednesday, thursday - neck achy. while using dressing stick to put pressure on right side of neck, discover a sore spot, slightly behind ear, that hurts when pressed but in a way that feels good; probably site of muscle attachment and pressing stretches it slightly

today - dressing stick on sore spot finds a lump I'm pretty sure wasn't there before

...fucksticks.

the initial pain didn't feel like FOP, but FOP reacts to muscular trauma, even just injections, and this, whatever I wrenched, may qualify as trauma. the good news is it's a small lump with no visible swelling or redness or heat. the bad news is it's really fucking close to my jaw. (there is a minor possibility the lump is inflamed lymph node rather than fop, but fop flare-ups have to be treated immediately, and I'm not taking any chances.)

so! I get a fun xmas/hannukah present of prednisone! yay! and also antibiotics for probable uti! yay!