ysobel: (me)
There was one point, shortly after I was diagnosed with FOP, that I learned that the worst cases of FOP left everything immobilized except fingers and face muscles. At the time I was horrified, since I still had decent mobility, but then I figured it was only the worst case scenario and maybe I'd get lucky.


Turns out, fingers aren't at all immune. I kept meaning to document the restrictions -- more so now that within the last year my left index finger has gotten affected. So here's the current state of my left hand:

(Right hand is in better shape -- the base of the thumb is locked, the pinky is crooked and bent and doesn't straighten, and the tipmost joint of the index finger is mostly fused, but I can clench a fist okay.)
ysobel: (Default)
I started to suspect part of my fatigue and brain fog problem right now may be a UTI -- no pain, very few of the usual symptoms, but cloudy pee that smells funny is not a good sign -- and I've been wondering if I should message my doctor and see if I can get tested and, assuming I do have one, get on antibiotics. I don’t like taking antibiotics, but I’ve suspected possible UTI for at least a week and it’s not going away on its own, and it’s probably not a good idea to let an infection go untreated just because it’s not painful.

Then last night I had a dream where I took Monkey to a specialized vet because -- and my subconscious is being super subtle here -- I had two weeks earlier taken her to my regular vet, who thought she had a UTI but there were two tests and one said yes and one said no so they weren’t sure but suggested I go to this other place, but I waited until after I got back from a week-long trip that included going to some sort of conference; and the new vet was yelling at me about how I needed to take better care of my cat, I should have canceled the trip and brought her in right away, blah blah blah.

No cats were harmed in the making of this dream, but, like I said: subtle. I wonder what it means...

(Called my doctor’s office, which was a hassle and a half -- partly because I don’t have most of the typical UTI symptoms like pain or burning or urgency, partly because they kept wanting me to make an appointment and I kept having to say “I am disabled and can’t give a urine sample at the doctor’s office, she’s going to want a urine test anyway so I should do that first, I’m fine with making an appointment but I want to get the urine test done first yes I fucking well ‘have trouble walking’ I am in a fucking wheelchair and can’t fucking use regular toilets what the fuck (paraphrased; I didn’t swear), my doctor is familiar with my circumstances please just send her a message” -- it would have been less work to message her myself (“suspect uti, please order test”) but that doesn’t always get seen the same day. We shall see what happens.)


In other news: For all that I am way behind on making the yarny stuff I want to make, I find myself wanting to make a small stuffed bunny for someone I’ve never met. (I don’t remember if I posted here or not about the 11 year old girl with FOP that was in ICU because of complications of parainfluenza and FOP-created scoliosis, and she had to be intubated, which can cause FOP issues but was kind of a Hail Mary as it was? She’s still in the PICU and will be for a while, but she’s doing better; got extubated yesterday and is on bipap, and in much better shape, though there’s still a long way to go. I asked her mom what her favorite animal and color are (bunnies/turkeys and pink/purple respectively) because I just … I don’t know, want to do something for her. And a crocheted pink bunny seems doable?)
ysobel: Pink bunny (bunny comics), head cut open, completely hollow (no brain today)
Migraines suck.

Just in case anyone was still wondering.

(At least imitrex gets it to a level where I can follow a podcast, or sometimes even Netflix -- nothing that requires concentration, but the new mst3k series is perfect. And I just watched the episode with NPH guest starring, whee.)

(...that was today. Yesterday I did the "derp I feel like crap and there's an icepick in my head and I'm super nauseous and photosensitive GEE WHAT COULD POSSIBLY BE HAPPENING maybw I'll just wait it out hm why is it getting worse" thing for a few hours, which meant that when I finally did take imitrex it didn't kick in for a while and i was still feeling like warmed-over death when I went to bed. This morning when I woke up to migraine symptoms I actually took med pretty much i,mediately, and it worked better. Whodathunkit.)

(Though I do have to lolwut at my mom, who responds to "i have a migraine" with about ten zillion questions including whether it was the first day (and mind you we'd talked the day before, and i mentioned the migraine the first time we talked yesterday; i don't know why she perpetually thjnks I'm not telling her things) or whether the imitrex worked or whatever. Luckily this was by email, not in person, so I didn't have to kill her, but sheesh -- I do not need an interrogation when my brain is approximating molten lava, tyvm.)
ysobel: (Default)
I know I keep disappearing, and I'm sorry. It's not intentional. I'm just finding it really hard to keep up with ... well, anything.

So. Updates!

Health: having continued fatigue and stamina problems, along with shit when I'm tired like aphasia and problems focusing my eyes right. I'm half considering asking my doctor how much she knows about ME/XFS and whether that's a possible explanation.

Niecelet: is two and a half (what), a total chatterbox, and really freaking adorable still. Also it appears I will have a nephew in a month and a bit (what). The sad thing is my sister has more energy at 7 months pregnant with a 2yo and a full time job than I do...

Crafting: glacially slow. It takes me a month to loom knit a hat. And then I get frustrated and don't work on stuff. There's tons I want to make, I just need more energy and mobility.

LJ stuff: ahahaha what oh lj. I'm so glad I don't do support there any more. I haven't decided whether or not to agree to the new tos ... which of course means this entry won't crosspost. My instinct is to not agree, but that's just a knee jerk reaction, plus I hate to just disappear.

Social media overview: I'm most active on rav, second most active here. Have picked up twitter again a little bit, do Facebook occasionally. Have an instagram account but it's not very interesting. Don't tumblr much. And as I said before I'm having trouble keeping up, so if I have missed any significant life events, I promise it's not personal. Feel free to comment with stuff I should know.

Other shit: some jerkwad dickface asswipe ran into the back of my van while it was parked downtown. No note of course. It goes in Tuesday to be fixed, which will take 3 days unless they find more damage than expected.

Games: Currently obsessed with Clicker Heroes (and I just transxended for the first time, eek!). Secondarily Abyssriun (why the fuck they changed it to tap tap fish, I don't nbkw but it's stupid), zen koi, a few others. I still want to write up game reviews. (Clicker Heroes is Steam, though I think there's a mobile version; the rest are mobile.) Oh, and Pokémon on 3DS, which I can't do for long stretches but I like way better than Pokémon go, though I've been playing Pokémon X for quite a while and barely have a clue what I'm doing.

Language stuff: went back to revising German on duo; I keep getting tripped up by false cognates (no, sinnvoll is not sinful!) but I've maintained my current streak, almost 250 days, yay me.

Um. I think that's all for now. Fair warning: I am typing this on my phone and my eyes aren't focusing right, so there may be typos or autocorrect weirdness. I apologize and will fix whey I can.
ysobel: (idiot with a garbage bag)
...which means that I get really fucking stupid when I have a migraine.

Woke up this morning with bad bad headache (icepick over right eye) plus nausea and dry vomiting. Googled symptoms, saw "migraine", realized oh yeah that's what I have.

Ate toast. Took normal meds. Took excedrin -- one -- for the headache. Whined a lot.

Realized around 4pm -- nausea mostly gone, headache down to just a few nails, still crappy overall -- that I have actual *migraine* meds I could have taken. Grumbled a bit.

...Realized around 6 that since I was still having migraine symptoms, I actually could still take the migraine med.


In other news, I got nothing done all day (gee I wonder why) but I am thinking of adding "survive migraine" to the done section of this weeks to-do list. Just to make myself feel better.

well fuck

Dec. 23rd, 2016 05:07 pm
ysobel: (Default)
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


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!


Dec. 5th, 2016 11:08 pm
ysobel: (Default)
*very long string of bad words*

I seem to have a UTI. Again. Or maybe still.

On the bright side, I know why I've been feeling like crap the last few days.

On the other hand, dammit. I hate UTIs.
ysobel: A vibrating bunny, from bunny comics (bwuh?)
Background: I have, for many moons now, been having trouble with fatigue. Some of it was VitD related, but it did continue once my D levels got into okay territory (per my doctor; I don't think they were high enough yet). Most of it was unknown cause -- no thyroid issues, no iron issues, etc.

So, last Monday (week and a half ago) I had a Reiki session. I am a little skeptical about actual health benefits of Reiki, but there's no harm to it that I know of, and it feels good. Relaxing. Like a massage, but without the "possibly damaging muscle by rubbing against bone" worry because it's touch but not deep touch. The practitioner commented that she really wanted to hang out around my left shoulder.

Monday night, I became aware of a lump in my left armpit that definitely hadn't been lumpy the previous night.

Tuesday, I actually have energy again. Very sudden, like a switch has flipped. (Possibly could be VitD levels finally being where they need to be). It's odd, but I figure it will only last a day or two.

Wednesday I go in to the doctor, who finds an infected hair follicle in my armpit, hence the lump. It's already starting to drain, so she gives me gauze pads and a recommendation for skin cleanser (Physoderm) and puts me on abx (Keflex) to whomp it on the inside.

Since then:

* energy levels have stayed up -- some fluctuations but not the Fatigue Of Doom

* depression is less depressy

* traveled down to visit sister/niecelet without crashing the next day

* weirdly, have had an appetite of ... well, practically a teenager o.O

So I have the same thing for breakfast every day (pb on toast), which is usually enough to hold me until dinner (I eat lunch if I remember but don't often remember), and dinner is enough to hold me through the night with rare exceptions. Except for the last week and a half, in which I have gotten ravenously hungry within a few hours of breakfast and also within a few hours of dinner. Yesterday I had two dinners. Today so far I have had two lunches and still feel hollow.

* also weird: When I saw her this week, and told her about the above things, my therapist said that her first impression was that I had lost weight. Even though I'm doing nothing to lose weight, am not exercising because how, and am even eating more.

It's almost like part of the switch-flip was revving up my metabolism.

I don't know why any of this has happened.

The appetite issue *could* theoretically be an abx issue, since I'm still taking it (10-day run), except that abx gi effects are usually along the lines of output (diarrhea or nausea) rather than input, and I can't find increased appetite on the list of possible side effects. Loss of appetite, yes, but that is SO not happening.

(And yes I've told my doctor about the appetite-and-maybe-metabolism thing; she wants labs done but after I'm clear of the abx.)
ysobel: (Default)
So it's been (slightly more than) a week since the Mohs procedure. Nose is healing; the biggest problem has been itchiness.

In case anyone wants photos, go to the second cut (the first is "spoiler" space for anyone viewing the entry directly).

space, the final front nose )

pics )
ysobel: (Default)
I'm off to see the wizard get my nose shaved woo. (Mohs surgery to make sure there are no remaining basal cells.)

Theoretically it's not a huge deal (and its surface stuff so shouldn't trigger any fop reaction) but right now I am more nervous than I expected.

(I have crochet to work on during the waiting periods. Yay crochet. Yay rainbow shawls in an easily memorizable pattern.)

ETA @10:45:

Am back -- they only needed to do one layer, woo. I have a ridiculous bandage on my nose that means I can't wear my glasses and probably won't be able to use the cpap; that stays on a few days and then I can "graduate" to bandaids.

Having trouble staying awake right now so I'm gonna go crash-nap.


Aug. 11th, 2016 02:15 pm
ysobel: (Default)
- doctor says my vit D levels are "fine" and I don't need to see her sooner than next month's appointment, & in the meantime take 1000-2000/day as maintenance. am doing 2k, and need to figure out if "a low end cut-off value of 30 ng/mL is considered to be appropriate for use in patients with disorders of bone and mineral metabolism per Endocrine Society guidelines." applies to FOP (i.e. whether it's "patients with disorders of (bone) and (mineral metabolism)" or "patients with disorders of (bone and mineral) metabolism".

- am under high stress right now -- biggest issue is that my roommate will be gone for 10 days; I have one of my aides set to stay overnight for that period but I'm still freaking out, because my roommate understands me in a way a lot of RL people don't, and I won't have her emotional support *and* there's no safety net if my aides flake or get sick, plus I’ll have to figure out dinners (she usually takes care of those); she’s going to be gone again in September for even longer -- and having frequent panic attacks and crying meltdowns

- which of course meant it was the ~perfect~ time to ask for feedback on an idea I've been playing with about tutoring math, because I'm in the ~best~ mental place to hear things like "yo not qualified to tutor K-12" and similar. oh yeah. brainweasels are having a field day.

- really need to get a coloring station set up so I can access supplies without help. I have a tv tray on wheels that needs raising and clearing off (of non-coloring stuff) but I only think of it when no one's around to help
ysobel: (Default)
Got my serum D levels tested today. After 8 weeks of 50k iU/week, *and getting tested less than 24h after the last dose*, I am all the way up to (drumroll please) ... 25.6.

(The doctor who looked at it says that it's "in good range" -- which I question because it says *right there* that 20 is the cutoff for *healthy* population and 30 is recommended as low end for "patients with disorders of bone and mineral metabolism" and I don't know whether that's disorders of either mineral metabolism or bone, in which case fop counts, or bone-or-mineral metabolism, in which case it doesn't, but even so it's pretty low, just not quite as bad -- and I should "continue at my current intake" which is lol because I only had 8 weeks worth. But I will send a message to my doctor and ask where we go next.)

I'm not sure if it's low enough any more to fully explain why I feel like crap, but I'm kinda oddly relieved it isn't super high.
ysobel: (Default)
I have this annoying thing going on where I will be tired during the day, and looking forward to going to bed, and as we're doing the going-to-bed thing I'm generally sleepy and having trouble remembering words and --

-- and I get in bed and a few minutes later, BAM, wide awake with my brain going "let's do stuff let's watch Netflix or play games or something whee".

For hours.

I know I "should" just try to sleep anyway, but the compulsion to do things is like an unignorable itch that just ... I can't fight it. And I don't know how much is psychological and how much is physical, how much is "ooh I'm actually comfortable let's stretch this out as long as we can" and how much is an aversion to sleep and how much is aversion to the period where you're not asleep yet but nrainwasps keep buzzing around and I have to distract myself.

It's fucking frustrating, and makes me feel like I'm failing at adulting.

Tonight's especially bad because earlier today I didn't just have the usual fatigue, I was actually sleepy, with the gritty feeling to my eyes that comes with way too little sleep, and I went to bed four hours ago and I'm not asleep. because that's how much I suck

I r smrt

Mar. 8th, 2016 01:13 pm
ysobel: A kitten curled up, one paw half over its face; text: ow (ow)
Sunday night I had two episodes of throwing up that left me with nausea and a headache, both of which lingered.

A headache that, I realized today, is pretty damn migraineish.

I probably would have figured it out sooner except I was assuming that a) the headache was secondary to the nausea, and b) therefore the only way to get rid of the headache would be to ride out the nausea for as long as it lasted. Except even if the first is the case (and I have no idea which direction the causality went and no real way to find out), the second doesn't necessarily follow.

I took an imitrex this morning, and whether it was the med treating the migraine or just placebo effect, but the headache/migraine is lots better. I may need to take a second one as the pain is starting to creep back, but after more than 24 hrs of constant headache, even partial relief is amazing.

I just wish I'd thought of it yesterday ..,
ysobel: (Default)
also, either I overused my voice singing (either last night and/or Wednesday, both of which involved singing that I didn't properly warm up for) or I have a sore throat. Overnight it was hurting to swallow or even breathe; today it's just sort of uncomfortable to swallow or talk, plus my speaking voice is too low. No other symptoms aside from small amounts of post-nasal-drip gunk.

My ass is planted firmly in a certain Egyptian river: I'm not sick, it will be better tomorrow, la la la.
ysobel: (Default)
Health update: still hate side effects. Hard to tell if the flare up is behaving, because it was a lot quieter while I was on the burst of prednisone but now that I'm tapering it's getting cranky again. I think the low-level adrenaline rush type feeling is the antibiotic, not the prednisone, just based in when it's kicking in, but I don't know which to blame for the lack of concentration or the extreme jitteriness.

At least I got a round of crochet done today. Woo.

(Also took Yahtzee for a nice long walk, figuring that I was going to be hot and sweaty and uncomfortable regardless of where I was, and so I might as well be hot and sweaty and uncomfortable and getting him some exercise. And sniffing. Sniffing is a very important part of his leisure walks. I think he was not displeased by the plan.)

Duolingo update: 300 day streak ftw. Mostly German -- I tried poking idly at French for a while but everything sounds the same D: (not *literally* everything of course, but it takes some adjusting to), and I will hop on Russian once they release it to beta

Yuletide update: I can only think of two things to request, one of which is sort of my "I request this a lot because I can never get enough" repeats. I might nom the two fandoms (and relevant characters) just so they're there, but I don't know whether I'll be signing up. Which feels odd. Otoh, I haven't been writing much anyway, and I should probably drop out of GYWO for this year since I was already way behind and haven't made any progress in months, but there is always the possibility of Yuletide-fueled catching up.
ysobel: (Default)
Got some prednisone (such fun stuff, yummy too) for the hip flare-up. Someone suggested that I should pay attention to the current areas of chronic pain (especially hands, but also spine and knees) to see how they react to hard-core anti-inflammatory.

Just (ish) took first dose, but baseline summary: spine and hands have been averaging 4, finger joints crackly esp left hand. Knees around 3 but worse under pressure (sitting upright w/ foot on footplate). Hip 7, does *not* like sitting upright (so I end up super slanted left or tilted back.

Will (hopefully remember to) update this entry over the next week. Temporarily stickying.

Read more... ) -- Final update

Post prednisone summary: hip not in flare up but almost definitely new bone (outside of hip) and cranky therefor. Knees have gone back to crankiness, spine ditto


Sep. 21st, 2015 05:54 pm
ysobel: A cat flopped out on the floor; text: meh (meh)
As far as I can tell, I have a FOP flare-up going on in my hip. It's deep enough that the characteristic hot sensitive swelling isn't there (or at least not tangible), and there's no mobility left to lose, so I can't *prove* flare-up ... but it feels FOP-ish.

*unenthusiastic yay*

...and sitting funny to take pressure off hip makes my back cranky.

...and tomorrow I get to start taking prednisone

*even less enthusiastic yay*

Semi-unrelatedly -- choir starts Thursday, but because of various issues and also the recentish pain and fatigue issues, I am uncharacteristically blah. I will go at least the first few weeks, but it is not improbable that I might drop out.

When did my life become this pathetic

(don't answer that)

(well, unless you really want to)


ysobel: (Default)
masquerading as a man with a reason

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