lizcommotion: four different colored panels of the MRI image of a brain (brain)
hello friends!

i have to do this documentation for my insurance company to prove that I still qualify for this special disability exemption thing. (Note: I will still have insurance if they reject it, just less good insurance. so don't worry on my account.)

the documentation I need relates to how, specifically, my conditions impact my daily functions and thus prevent me from working. the fun thing is my brain fog has been crap lately so I had to read their letter five times to figure that out. /o\

Request for links:

I am getting assistance with writing letters and contacting doctors, but I'm looking for help finding a comprehensive list of "Activities of Daily Living" or prohibitions to working or something of that nature. Preferably something in checklist/numeric form so I can tick of boxes and then pass it to people who can Word right now. something like "Can you open jars without assistance?" and "How hard is it to dress yourself?" and all those fun questions that are just...annoying as crap.

General announcement:

Note: I've also been less present on dreamwidth because my "mental energy" spoons are really fucking low right now, and so it's "do I catch up on dreamwidth OR write some words for campnano OR talk to friends OR read a chapter in this YA novel OR knit in stockinette stitch OR operate a stove OR schedule an appointment." It...is really really annoying. Like, *possibly* the most annoying thing I have dealt with in this whole disability experience, though that could be some sort of retrospective haze thing making other things feel less shitty. Anyway, I have feelz, which...will maybe share when I have more brains.

Also note: I have been around on Twitter (@ untonuggan) more often because 140 characters are something my brain can *mostly* handle (except when I get aphasia or reading comprehension issues and misread crap or can't type).
lizcommotion: a silhouette of a woman with antlers/horns (horns)
Just thinking about this most excellent pain scale that [personal profile] alexseanchai linked to.

Talking about pain is weird and hard because people experience pain differently. There is no way for me to know if the blue I see is the blue you see. And there is definitely no way for me to know if your period cramps are the same as my period cramps.

lots of thoughts about pain and issues with how we talk about it, including ableism )

Probably I could fill volumes but I'll leave this here for now as an open post, and feel free to cross link in dreamwidth (but ask before tumblr etc for the moment because different type of commenter) as I think I'm not the only one who has many thoughts and a need to talk about chronic pain not just in the medical-ese of the fucking pain scale or in a list of words like "stabbing" and "throbbing" and other things that look like they could come from a sexyfuntimes fic but are not, actually, that sexyfuntimes in this case.
lizcommotion: a hand drawn/colored happy cane (disability cane happy)
I spend a lot of time looking for a doctor I feel I can work with before I actually make an appointment. I am lucky in that I have a PPO in addition to Medicare, and I have the educational background that lets me know how to do all of this shit. It is a pain in the butt, no joke, and it is not always successful. I don't do all of this for every doctor, and I hope it isn't just super overwhelmoing. However, if you are stuck in WHY AM I ONLY FINDING ASSHOLES limbo, here are some of the things I try in order to find a good doctor for me:
US centric, based on what works for me and my health insurance plan etc, but putting this out there because it's taken me years to make an art out of doing this )
tl;dr I use a combo of word of mouth, finding out who's researching the thing, and double checking someone's background on the internet (aka "what's your internet resume?") I don't do all of this for every appointment; usually I do more if I've had a run of terribad experiences in a specialty or it's a super-rare thing I'm trying to find a doctor for.

(note: dw pingback to this is okay, but please ask before linking it out to the wider internets)
lizcommotion: 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??"

lizcommotion: Severus Snape head shot, text reads "Not Amused" (Snape)
Am hoping she is helpful, and we can keep body weight discussions to a minimum because that is not what I am there to talk about.

In related news, I wrote this tirade comment on [personal profile] shehasathree 's journal and it seemed relevant and I am sharing it because I've been thinking about it since that asshole cardiologist last week

This is my problem with #notalldoctors:

If pretty much *anyone else* crosses a big ol' boundary

tw: talkin' about abuse and manipulation )
 
lizcommotion: four different colored panels of the MRI image of a brain (brain)
Has anyone ever had a headache where:
  • no pain if they are laying down (at least, after a couple minutes)
  • immediate stabbing pain if they sit up (only on one side of the head, though the side may change)
  • the pain may dull after awhile of sitting up
  • the pain is only on one side, around/just behind one ear, and feels like pressure or maybe a lance going through the head
  • sometimes there is also inner ear pain on that side of the head
  • it has lasted at least four days
I know all the medical thingies say if you experience a weird headache to go to a doctor, but this one feels SO weird (like, even my nurse-mom is like, "I'll have to think about that one") that I just worry-from-past-experience that if I go to a doctor they will do things like make me have moar brain scans (have had maybe three in the past year? and they were all fine); refer me to a specialist for whom I'll have to wait a long time; give me painkillers that are super strong and also trigger mania which is no good; decide in the end that it is either psychosomatic or a side effect of one of my meds and they can't actually do anything about it, or it will have gone away by the time my appointment with the specialist actually comes.
It's nice when you have confidence in the medical system, see?

So anyway, not expecting Medical Advice (TM) for which I will sue if it doesn't work or something, just wondering if I am the only one this has happened to or if it shares commonalities with anyone else's weird headaches. Because sometimes I really do wonder if I am going "crazy" in the negative, stereotyped-by-the-media sense of the word.

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lizcommotion: 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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