i hear the voices when I'm dreaming

So, you know how my finger was doing Weird Shit? (See my prev post if not) My hand therapist wanted me seen by a hand *doctor*, with medical training and all that, which seemed reasonable.

Appointment was today at 4pm. At one point they moved me from the main waiting room to another idek. By 4)30 or so I was in a room. By 5 I was still waiting.

(Tangent -- something about this room makes me want to cry. I think it's something memory related -- don’t know if it’s from ortho stuff back when I was a kid, or the useless attempts at getting occupational rehab after diagnosis, or what. Was definitely the room because waiting room didn't trigger anything) but it was like there was a memory I couldn't quite access -- like having a word on the tip of your tongue -- but my anxiety shot way up and there was definitely some sort of old association thing going on. OTOH if it had been a horror movie, about then would be when the lights would flicker and I'd go out of the room and no one would be around... ahem. Anyway.)

...by 5:20 I was out.

I'd brought some printouts (only like five pages) about FOP. Doctor barely even glanced at them (though the inevitable intern that was there read it and chatted with me a bit afterwards; one more person educated yay). Hell, doctor barely let me rattle off the elevator pitch version of FOP For Doctors.

Guy was mostly "lol I'm a surgeon", which is pretty useless for me. I did get an explanation/guess as to what was going on -- combination of trigger finger when flexing down and a thing on extension where the tendons down along the back of the hand are slipping sideways over each other -- and I got one of my questions (am I damaging anything by using my finger when it clicks) answered (since it's painless, probably not). Though I don't know how much I believe him.

I also got a few extra ring splints haha. Not, of course, for the finger I went in for, but for the index and ring of that hand, which are starting to swan. I think they might be trying to get me silver ring splints maybe but idk exactly.

His main attitude, through the whole thing, was "wtf why are you seeing a surgeon if you don't want surgery", ans he was very dismissive of any treatment not involving surgery. Like not "this won't work" but that surgery was the only conceivable option and that I was ridiculous for wanting to see ... yknow ... someone with full medical training ... He also told me to go to a hand therapist.

What, kind of like the one I already see that told me to go to ortho? (－‸ლ)

Cherry on top: the person who was driving me, and helping with form fillings-out, cams in the room with me because very long forms and also because the place is a maze and there's no cell reception and stuff. Doctor comes in the room and shakes hands with her first, and even when it became clear that I was the patient and also the one giving all the info and asking questions and shit, he kept fucking talking to her instead of me. Including at one point standing between me and the poster he was using to show where the tendons are being weird, so that he could show her. (She said "uh why don't you let her see, I'm just the driver", and he did show me, but kept talking to her. Jerkface.

Okay, so.

Survived roommate leaving.

Survived thanksgiving, which wasn't very thanksgiving-y. My mom was down with my sister, which was good because my dad and stepmom were here all day Thursday through Sunday getting things ready for the new roommate, who moved in Sunday morning. And by getting things ready I mean sorting through a lot of shit and getting rid of a lot and organizing things and cleaning things. And by all day I mean 10 or 10:30 until around 6-7:30, and while we had occasional breaks of not doing things, I didn't have any solitude, which is hard for an ultra introvert who's used to being alone half the day.

We went through all the remaining bookshelves -- I think it was somewhere around 22 shelves worth of books, netwwwn having very tall bookcases and shelves that were two or three layers deep. I probably got rid of (well, donated to library) at least three quarters of them. I think there are ... four and a half shelves occupied now, and single stacked.

I also have some fanzines I need to figure out what to do with. Not appropriate for library (especially the slash ones) but I feel weird just throwing them out.

Anyway. I mostly survived the purging/cleaning, though my dad is firmly of the "if in doubt, throw it out" camp. Which works for some things but not for emotionally relevant stuff. I had to argue for a few things, like the tardis string lights. And I drew a hard boundary of no going through yarn. We tubbed all the loose stuff but I was in no mindspace for sorting through and deciding what to keep and what not to.

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Night before last, my bed decided to stop working.

It's an alternating air pressure mattress -- shifts under me since I can't roll or shift. Good at reducing pressure sores. But the air pump died, without warning, and ,,, it's not a very comfortable bed when not inflated. I have a request in for a replacement but that has to go through insurance; in the meantime I swapped to my old mattress (which I had kept in the closet partly as a spare for visitors, mainly for a situation like this) because it's somewhat more comfortable.

Of course this happened at the end of the Days Of Cleaning, plus I forgot my night meds that night, so I slept horribly. Which meant I felt even more like crap. I even skipped rehearsal, though it took some talking myself out of guilt/should/"maybe I'm just being lazy" stuff -- but the deciding factor was basically that staying home would reduce the chances of getting sick (because when I'm stressed and tired and feeling like crap, I'd pick up any germs floating around).

It's strangely quiet at night without the air pump running.

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I mentioned a few entries back that I quit session because overwhelm. The entirety of the feedback I have gotten not only supports me in my path, but has been majorly complimentary about how well I wrote my letter and how emotionally mature it was and how true it felt.

Which is weird as fuck because I *still* feel like I selfishly gave up.

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Unrelatedly.

This Saturday I will be in sf all day for a conference thingie for people with my medical condition and their families. It will be interesting getting to meet some of the people I've only talked with on Facebook.

The ... I think I've mentioned it before, but I'm making a stuffed pink bunny for one kid with FOP who's been in the hospital since march. It's finished -- I think it looks stupid and crude and amateur and dorky, but other people assure me it's adorable. The recipient isn't going to be there herself, but her mom is, and so I'm going to hand it off in person.

(One of the people I was looking forward to meeting up with, died about a week ago. Some sort of bacterial infection leading to toxic shock syndrome. She was almost 33, and I'm torn between "it's not fucking fair" and "this could happen to me ack". Rationally I know that there are FOPera in their 60s and 70s, but 40 is the median age of death, and that's sorta freaking me out to think about.)

Anyway I am ridiculously excited. Also excited because I have a clinical appointment with the main doctors who study fop. I'm not sure what all I expect to get out of a clinical visit (though I do want to ask if hyperkeratosis is common at all) but I am excited about it idek.

I'm not excited about the hours -- I can't stay overnight anywhere, which means day trip, which means getting up obscenely early (I may not make it there by 8:30 when stuff begins) and getting back late (clinical appt is 6-6:30, so probably leaving around 7 at the earliest). At least I'm not the one driving.

Oh, and one of the coordinators messaged me today saying they would be taking video stuff during the conference, for educational or whatever videos, and could I please bring some yarn and knitting needles so they could video me knitting. I am v amused. Said yes of course.

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There's one more thing, but I'm going to do a separate locked entry because reasons.

Okay, so, uh. Most of you know that I have a condition called FOP -- Fibrodysplasia Ossificans Progressiva. For anyone who doesn't: it’s a really fucking rare medical condition where the body creates bone in and around muscles and tendons, progressively immobilizing the body into a human statue. It is incurable and untreatable.

This is a highly relevant video:



The 11-year-old in that video, Erin, got sick in April with basically the common cold, but it landed her in ICU. Between the severe scoliosis that FOP causes (I have way milder curvature because I was older when I started losing mobility, 10 instead of Erin’s 3, and my progression was slower) and the bone locking up her rib cage and taking up space in her chest, her airway is severely compromised. She was intubated as a last-resort measure for keeping her alive.

For the last two months, she’s been bouncing between ICU and “regular” hospital. About a week ago, her parents and doctors were discussing long term care options -- either BiPAP and hope like hell she never gets sick again, or a permanent tracheotomy. The trach procedure, complicated by the restrictions of FOP, would have her in the hospital until at least September and probably longer.

Four hours ago, she stopped breathing.

She has been successfully (re-)intubated, but... it’s bad and scary and so fucking not fair she’s a fucking *kid*, she isn't even 12 yet, she shouldn't be in the fucking *hospital* for *months*, let alone almost fucking *dying*.

(and if I’m being honest, this is fucking scaring me, not just on her behalf. My airway isn’t as bad, but this could be in my future too, and in another universe it could have been my path.)

So. Please, if you pray or send positive vibes or whatever, please send some to Erin and her family.

(She also loves postcards -- address is here -- but mainly I just want positive energy out in the universe for her.)