untonuggan: sign which says "Please do not feed the fears" (brain weasels (do not feed))
Note: apologies in advance for the very gender binary language. I am using the terms the medical establishment uses for vaccine criteria which because medical establishment they are shitty, but I am also trying to be inclusive where possible. Just FYI totally skip the part behind the cut text if you need to.

So I like to think of myself as a fairly sympathetic listener. (Doesn't everyone tho?) This is harder in person than in text, because in text I get a sense to read something I was going to say and then erase it because I was about to offer unsolicited advice.

Also in person I sometimes freak out because I am somewhat rusty with humaning and so I just sort of ramble sometimes. Also also, if a nerd-out button gets pressed sometimes I start nerding and then forget we were actually supposed to be talking about the anxiety issue until I have rambled on about this cool thing I found out when I was researching the other day for...awhile. This sometimes also hits my social anxiety button, which means I just. keep. talking.

I am working on this. It is hard.

Recently I was talking about anxiety with a person who shall remain nameless, and the shitty visceral-ness of anxiety. And how anxiety's so toxic that certain medical people recommend not doing regular breast lump self-checks because the freaking out is more toxic than the rate of cancer actually detected. (Or something something like that?)

Anyway, health research is one of my nerd buttons. (My mom is a nurse, I grew up with "I saw the coolest parasite at work today!" as dinner table conversation. Then in college I was a peer sexual health educator and thought about doing public health, which basically means my filter for "these are things we don't talk about in public restaurants" or "check if there are children here before launching into certain topics" is something I have trouble gauging sometimes.)

cn: gardasil, cancer, sexual health and sexytimes, trying to adapt binary medical language to more trans inclusive, spendy things if you don't have insurance bc this is America dammit, here be vaccines )

tl;dr If I am talking to you -- online or off -- and I nerd out at you about a thing and it actually increases your anxiety, please tell me to stop. I am probably telling myself to stop in my head but I forgot that I have the option to do that because I hit Awkward Land. I'm working on it.

And usually I am not this bad. I think. Also maybe now you know a thing about the vaccine for HPV that you did not know before! Or maybe you did.

(Also, if you want to nerd out about cool medical research and/or sexual health, lmk. I am probably down for that, even if it includes parasites. Probably especially if it includes parasites.)
untonuggan: typewriter on a table, faded (writing)
OK, first, as someone who's a white woman, I see a lot of that aspect of my identities on TV. I see some portrayals of queer women on TV, but there's a lot of problematic stuff. Like, "And how long until one of these characters meets a horrible fate?" is basically how media has gone for a long time, or the film was made by an indie company because that is how they could get funding and so it's not terribly well made. And please don't get me started on the L-word.

OTOH...there's not that many great depictions of disability in television media? Also, usually when disability is portrayed people pick something very visible ("look this is the character who's disabled you can tell by looking at their accessibility device or some sort of visible difference") and making the Entire Fucking Storyline about the fact that they have a disability. And it's basically the ooooonly thing you know about them. And that they're inspirational and brave. *barf*

So along comes Switched at Birth, which I know I have raved about before. I am raving again. Partly because *look here are lots of intersectional identities* and *here are Deaf people arguing about disability politics and toeing the 'party line' and cochlear implants on ABC Family*. Also, they're multi-dimensional characters.

Yes, Daphne is Deaf. Her main storylines (to where I am in season 2 *don't spoil the rest I know there's more*) are about the whole switched-at-birth thing, her complex relationships with her now-blended family, class differences, "wait technically I am white but I was raised Latina til I found out about the switch so...", all the boyfriend drama, and aspirations to be a chef. Probably more things too. Like I said -- so much more than "she's the Deaf one" because there's LOTS of Deaf Characters. Also, it's a very "social model of disability" show.

Ahoy be spoilers for a couple points in the show where I felt the show did things *really well*, just so I can truly convince you to watch it. Also, links to a couple clips.

minor spoiler in season 1, I'm not sharing how this event happens it's mostly about a one to two minute clip )

spoilers for a couple plot points in season 2 with longer scenes involved )

I just.

Bring the teenage soap opera drama. Bring it all. I lurv you so much, this show.

P.S. I've been off-and-on pondering some thoughts on Daredevil and disability. This blog post has a lot of the things I had feelz about, as does this science one. I just...feel like while there's some good "here's accessible devices in action" and "here's the occasional person being a douche," Matt Murdock doesn't actually lose that much privilege via being blind-with-superpowers. That would not be such a big deal except for general lack of representation, because then Average Person gets tons of misconceptions about being blind. But there is no *one* experience for any one disability. Just, I think Matt Murdock is very outside the average range.
untonuggan: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
I am having a lot of feelz lately when I do recognize something in my health experience or queer experience in mass media represented and it's not just "oh look and inspiring story about how lazy we all are if we don't run a marathon like this kid in the special olympics" or "don't get close to these two women in love, they're about to experience a horrible fate to remind us all that queers can never be truly happy!"

/o\

A show which has been counteracting these depressing trends and giving me warm fuzzies, which I will pimp *again*, is Switched at Birth.

I won't go into the particulars of how this scene came up, because spoilerz, but:

A character with an invisible disability (Person A) who was closeted about it was talking to a Deaf character (Person B) who is strongly involved in the Deaf community. They were frustrated that someone they knew had a physical disability (Person C) that was interfering with their ability to sign, and thus have a really close form of communication (versus lip-reading).

Person A told Person B that, "[Person C] is probably a hundred times more frustrated, because it really sucks to have your body betray you."

[mic drop]

I'm sorry, I lost my shit. For several days. Someone on ABC FAMILY just spoke my truth to millions of viewers while navigating the waters of intersectionality and hiding disability and that being a legit choice and that there are different types of disability and it sucks and it's no one's *fault* and there's all kinds of adjustments and grieving that happens when you have a new diagnosis.

Excuse me while I recover from my swoon

***

At the suggestion of [personal profile] kaberett , I've been checking out endometriosis.org.

additional example, cn: ER visits, the suckage therein, validation around the suckage, feelings about how invasive medical exams can feel like assault )

***

So, does anyone have any recs for fic or books or media or whatever that will give me similar tingly feelings of "omigod other people feel this too??"

untonuggan: A hand-drawn/colored lovely little creature with a knitted cap and piles of yarn behind it knitting a scarf (knitting creature)
I am trying to avoid griping too much about how much my body DNW the random 30 degree temperature changes and barometric pressure nonsense that is going on here right now. Also, today I have a serious case of Missing Rogue (even though Haley is wonderful). *sigh*

Instead, have some linkspam which is mostly me talking about knitting and spinning and suchlike:

My mom (and dad) got me glorious yarn for my birthday. I have been trying to decide what to do with it, as it is technically enough for a sweater. However, as I am heat intolerant and my mom very considerately chose chunky yarn so it would be a fast knit...I have finally decided to make a cape poncho thing with it. *is excite* I am also excited because the pattern seems to be exceedingly well written (what's this, I actually read through the pattern before knitting anything? *gasp*) and has both charts and written instructions for the lace and cabled sections. If you want piiiictuuures, it is called the Covetable Cabled Cape on Ravelry. If you are curious, the yarn I'm going to use is 50/50 wool/alpaca and ~purple~.

Also in knitting and spinning news, I have several skeins and skeins-in-progress whose colors I think will work well together. They also are of a relatively similar thickness and the textures work well together, too. I am thinking of making a shawl, perhaps Hitchhiker, perhaps something else. Who knows? I shall wait until I've finished the current spinning.

Some of the skeins I want to use have yet to be fulled. That is, they are spun, but I need to get them wet and soapy and thwack them to turn them into actual usable yarn. This is a fun process -- and a definite stress reliever -- I just haven't really had spoons. Actually, come to think of it, there's one spun bit of yarn that's still on a spindle. I, um, need to wind it onto a niddy noddy. Errr...maybe I'll do that soon. If my arms will let me, it can be a bit ache-making. Maybe if I take breaks? This is what I need small children to use as manual labor share the joys of spinning with. My second nephew is *very* good at winding yarn onto niddy noddies, or at least helping keep the spindle from flying all over the room while I do it. Does anyone else have that problem? *ponders the possibility of recruiting partner* (Partner is crimping CAT-6 cables today, though, so maybe not).

That's about all for now. Going to attempt to resist falling asleep. Naps, they seem to be consuming me these days.
untonuggan: a hand drawn/colored happy cane (disability cane happy)
So it's looking like I'm SOL regarding pain medication. I'm on Lyrica already; I can't take any kind of anything that messes with serotonin; NSAIDs are out with my gut the way it is; don't want opiates because All The Reasons.

My doctor wants me to go to a pain clinic; I'm not sure what they'll do other than offer me strong opiates or something and give me physical therapy, but I'm supposed to be getting PT for my dizziness so yes that would be out for insurance reasons alone, let alone me going bananas. Anyone have experiences to offer on pain clinics?

In the meantime, my side effect journey of daisies and rainbows and leprechauns has made me leery of adding more chemicals to my internal chemistry project. Like, I've *always* hated being on this many meds and just kind of grinned and born it. But seriously? This is frelling ridiculous. And so, yes. I'm looking for non-medication ways to keep this under control, at least until a neurokinin-1 antagonists maybe comes on the market approved for pain management. *crosses fingers* But that could be awhile.

So yes, I'm soliciting suggestions in this post for pain management. I will do my best not to immediately rule them out because, say, I've tried acupuncture and it didn't work. Nothing is too woo for this post. I just want a working list to, er, work off of so I can fucking knit and spin regularly again. (I have knit TWO ROWS this week and spun nothing and it's making me cranky, who knows what I would have done without video games.)

Thank you, dear circle, for all your support!

PS fewer seizures yesterday! woo!

PPS Yes standard disclaimer regarding I know you're not medical professionals blah blah won't sue you blah blah check with my doctor blah blah.

untonuggan: four different colored panels of the MRI image of a brain (brain)
Background: I take Celebrex for pain because so far (besides Lyrica, which really works for nerve pain not joint pain), nothing else works. My doctor said the next thing to try would be a heavier narcotic, and I am not a fan of that class of drugs if I can possibly avoid it.

Recently: So when I was in the hospital they took me off my Celebrex (a pain medication), but didn't give anyone a clear reason why. The nursing staff apparently kind of implied to my father that maybe-sorta it might have been an oversight of not getting put into the computer, but they weren't sure and of course couldn't say because litigation hush hush.
I guess this needs a trigger warning? brief mention of seizures, gut stuff, other med side effects )
Now: It would be so great if all my problems could be traced to one source, even though I really really really Do Not Want this pain right now. Celebrex has been "great", at least for pain, in that I could do more than lie on the couch and go "ow." So I really hope we can get this under control.

Until then, I guess I'll be playing a lot of New Leaf and other video games. And watching TV. Hey, maybe Celebrex caused my book-reading-halting brain fog, too. Wouldn't that be great/terrible?

ETA: Also, due to med half life, I can look forward to another 2 days of side effects at least. Weeeee!

untonuggan: Black and White Image with a mug, text reads "Come let us have some tea  and continue to talk about happy things" (tea happy things)
Thank goodness. If you want full details of really know-nothing doctors you can check it out on [community profile] fucking_docs .

For how I'm feeling, read on! I am doing ok, still seizing or pseudo-seizing or NESeizing wtf you want to call it technically.

tw: description of seizure experience, fuckin' docs, diagnoses, hospitals/medical stuff, epilepsy, not-epilepsy )Here is what is helpful:
  • good thoughts, hugs
  • information on seizure service dogs (I know there was someone who had some info but I've lost the email)
  • information on weird types of seizures
  • rec's for good places to go for weird seizure disorders in the mid-Atlantic Region (near NoVa ideally) AND/OR places to fucking avoid
  • coping tips for seizures
  • people who might be good resources for sharing their own experiences with seizure stuff (but please, ask them first)
  • info on: Lyme and Seizures; POTS and Seizures (feel free to give me targeted internet search results here!)
Here is what is not helpful
  • horror stories
  • anything to do with how you think it probably is a conversion disorder/pseudo-seizure/etc. Just don't want to hear it. Sorry! Not enough ticky boxes have been crossed off for me to cross that bridge.
  • advice/info not listed in the "helpful" section. It might actually be helpful, what you are thinking, but I only have about a teaspoon of cope right now and it is taken up by having had 10 "episodes" in an hour earlier. So please stick to the list. Thanks!

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untonuggan: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
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