jesse_the_k: mirror reflection of 1/3 of my head, creating a central third eye, a heart shaped face, and a super-pucker mouth (Default)
[personal profile] jesse_the_k
http://www.theferrett.com/ferrettworks/2015/04/i-hope-you-get-officially-sick/
begin quote
the minute you can condense your symptoms into a singular diagnosis, and have That Phrase on your sheet, it’s like getting upgraded to first class on the airline. Suddenly, doctors have to agree that you must be taken seriously – sure, you’re in the exact same amount of pain you were in before, but they can’t hand-wave it off. When they see That Phrase on your chart, they actually stop and read back to see what they were missing, because That Phrase makes you somebody important.
quote ends

This blogger also writes about writing, and posts pictures of amazing nail art:

http://www.theferrett.com/ferrettworks/ferretts-pretty-pretty-princess-nails-a-gallery/

(no subject)

Date: 2017-09-09 06:13 am (UTC)
niqaeli: cat with arizona flag in the background (Default)
From: [personal profile] niqaeli
I'm currently fighting through TRYING to get a diganosis. My bloodwork finally threw up inarguable signs of autoimmune shit. The first rheum I saw said "You don't have any standard presentation of usual autoimmune stuff, so your joint crap's just the fact that you're hyperflexible and the ANA is just eh, sometimes that happens. Wanna try a different NSAID for your daily pain med?" I mean, I said yes on the meds because what the fuck why not let's see if a different NSAID is any better, but I'm still pissed off and not going back to the guy. Sure, my ANA's through the roof, and I have had lowkey signs of autoimmune FOR-FUCKING-EVER, but it's nothing immediately and totally OBVIOUS that I would've caught ten goddamn years ago if it was that simple, so let's not even bother re-running the bloodwork! Have a paid med adjustment, bye now! Rrrrrrrrr. >:|

I haven't gotten round trying another rheumatologist yet. Because I'm over ten years in on this shit, and I'm fucking tired and I got lucky as fuck and landed myself a GP who listens and believes me and thinks pain is worth treating regardless of WHAT the underlying cause is, so my symptoms are at least managed. But I'd like the goddman shiny Magic Phrase, and... yeah. *sigh*

It's never simple, but diagnosis can be fucking magical. It was magical for my brain shit! If goddamn only it was as easy for everything else.
Edited Date: 2017-09-09 06:14 am (UTC)

(no subject)

Date: 2017-09-09 05:31 pm (UTC)
lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
From: [personal profile] lizcommotion
I had so much thoughts about this I just ended up writing a post.
lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
From: [personal profile] lizcommotion
Yeah.

[TW cancer, ableism feels]

My neighbor just got a rare cancer diagnosis, and his wife has been around chatting with others in the household for support, etc. Also because it was one of those cancers where they could only tell so much from labwork, and they were going to try surgery and best case was "whoops sorry it was just gallstones" and worst case was "it's spread everywhere, we will just close you up again, get your affairs in order." Which, is really not very reassuring?

But I really needed time and space before I could check in with how they were doing, because my first reaction that I worked very hard not to say out loud to them was OH NO YOU HAVE WAITED A WEEK FOR A DIAGNOSIS. Like, I didn't say it, but it's been decades of "well that's...interesting..." (What I ended up saying was, "Find a surgeon that you trust, and if you feel better but don't know exactly what kind of cancer it is at least you feel better right? Also let me know if you Netflix recs")

The other thing I did not tell my neighbors but thought to myself is that it's a good thing he's the one who presented with weird jaundice-like symptoms, because medical sexism is real and they caught the cancer just in time. So any delays because "well maybe it's just lady anxiety" = probably death.
lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
From: [personal profile] lizcommotion
I was very very lucky in that I had two friends/mentors who had been dealing with disability a lot longer than me who helped me with some basic survival shit. Like "it's okay to get a second opinion" and "doctors don't know everything."

(I mean, my mom also has Lupus, but she is like most nurses the worst patient and also kinda invested in the medical model. I needed some bad crips to help me navigate the current effed up medical system.)

Like just humor at the ridiculousness of it all? One of those friends is on dialysis and whenever I ask him how he's doing he's like "well I'd be FINE if my insurance company would stop mandating that I take these suicide inventories. Like gee, thanks for reminding me how much dialysis sucks." and then we gripe about all this bullshit together, and it's less bad.

I'm also eternally amused/frustrated by the irony of the fact that I was taking a sociology class that was going to cover the social model of disability, but I had to withdraw from classes that semester because my health went to shit so I never got to attend those lectures. I did read some of the course readings (mostly by John Hockenberry) and it helped, but if I'd known *more* about the social model of disability when I first got sick? Like, actually had class discussions about it? That would have been nice too.

Even with all that help from other disabled people, there was definitely a dark, dark period where I tried to use religion to heal myself and it actually just ended up being a shitshow. But the moral of that particular story is trust your gut, and not neopagan chiropractors who tell you such gems as "people who aren't on disability tend not to be as sick, it's all about your attitude" when they first meet you and find out you have a disability.
shehasathree: (illyria with axe)
From: [personal profile] shehasathree
Oh, how i feel you re "one week for dx". I want to ugly-laughsob. Or yell. Instead, i am almost certain that i appear completely normal to an outside observer right now.

(no subject)

Date: 2017-09-09 06:51 pm (UTC)
monanotlisa: Diana as Diana Prince in glasses and a hat, lifting the rim of the latter rakishly. HOT! (Default)
From: [personal profile] monanotlisa
True -- some of my stuff is end-bucket shit that no one knows or cares to treat (the IBS), but at least my insane pain back when I had a uterus suddenly seemed to have doctors take note when there was a huge bleeding CYST on my ovary, and two FIBROIDS visible on their instruments.

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jesse_the_k: mirror reflection of 1/3 of my head, creating a central third eye, a heart shaped face, and a super-pucker mouth (Default)
Jesse the K

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