make. it. stop.

CW: medical/trans drama, suicidal ideation, dysphoria, panic attacks

 

Thank you for your nudges, likes and messages since my last update.

 

I had hoped to come back with great news but alas, I cannot.

 

The Zoladex, after ramping to a critical mass of hormones, ended up working. The migraines faded, as did the pain, and the gynaecologist admitted to having delayed my hysterectomy and I was given a date. This came with a warning -that on the day I would have to fight for it. Instead, I needed to fight -not- to have it, and I failed dramatically. And, now, kinda dying? Maybe.

Continue reading make. it. stop.

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Escalations and Revelations

CN: gender-related medical stuffs, codeine drama, pain, discrimination, medical ick, brief mention of suicidal ideation

 

Did you know it’s possible to be in so much pain that you forget to take pain meds? To forget they even exist, that there’s a way to make it not all-consumingly awful?

 

I didn’t. Now, this is me, we’re talking about. I refused anaesthesia for my last surgical procedure, twice, and the thought of taking it was highly amusing. The one before, I insisted on only using a local, and that for reasons of muscle relaxing only and, because I wasn’t allowed to type in the OR, and they didn’t ask the right question, I went through that without the local actually having an effect. (Try saying ‘it’s not a sharp pain, it’s an I-can-feel-the-needle-on-my-bone-and-that’s-not-normal-pain in sign with your bad arm being held, dislocated, above your head and the other arm covered by a blanket and held down and stroked for “comfort because you’re so brave, don’t you like being touched?”. Yeah. That’s about right.) This pain was no greater than my normal pain. After my appendectomy I was able to drive and function within three days, and the nurses controlled my pain meds because I was just like ‘but it doesn’t hurt more’. I can’t tell you what my “worst” piercing was because they don’t bother me. If I am complaining about pain it is black-out-in-the-toilet-after-throwing-up pain. The stuff I used to be able to get up to is more extreme than any of the fics I’ve written, and I used to be unmatchable because nobody else read ‘dark’ as anything other than ‘mild angst’.

 

So this morning, I was knitting and watching TV, and I looked at the clock and was like it has been three hours I can’t take my meds yet. Continue reading Escalations and Revelations

With a Whimper, not even a sound

CN: moar chronic pain vs codeine discussion, discrimination, 

 

So as you know, codeine was shoved off onto prescription only as of February of this year. That was five months ago. I told you at the time that a previously considerate GP turned into a threatening ‘you really only have anxiety’ monster after a single telephone consultation with the state rehab people, because “the head doctor” said people only take codeine because it hides anxiety and pain will go away with mental health treatment. You know I was lucky enough to find a new GP, who initially gave me not a small amount of grief, but settled into prescribing me just-under-two-weeks worth every two weeks and didn’t ask where I made up the rest. You know he found something actually wrong, for which I’m going through testing, waiting, and more waiting.

 

You may have even gathered that things were looking better for me – I was establishing a new routine, I wasn’t terrified of going to the doctor because I didn’t know if I’d get a script or have to fight for it or go through another unwanted, traumatic test in order to get it.

 

Today, when I left the room, the receptionist kept offering me tissues and then, instead of letting me type to her, shoved me off into a private room and locked me in.

 

Clearly, something changed.

 

Continue reading With a Whimper, not even a sound

The Assumption of Autonomy

TW: medical things requiring a gynaecologist, medical treatment and disability, disability discrimination

 

I’mma say this once more, and only once. Being disabled does not and never should come with the assumption that I do not have bodily autonomy or the ability to make decisions about my body. It also should not come with the assumption that saying stupid stuff should be taken as medical advice, because really, drink more water! eat more food! would have stopped my migraines over a decade ago if it was going to work, wouldn’t you think?

 

What I dislike most about my situation is that I have to fight for every ounce of respect I get. I don’t talk. I am perfectly capable of expressing my thoughts and wishes by typing and, increasingly, by signing. I still have enough intelligence to understand what’s going on around me, and, increasingly, to explain it to others. Just the other day I was explaining union organising theory because certain people couldn’t understand how requiring people to take off their bras to go through security could be considered the least objectionable option. (This is a thing, btw.)

 

So I haven’t slept or eaten today because I had to go to the gynaecologist. Again. And I was told, again, that because I can’t talk, I can’t have the hysterectomy I have been asking for for years, since before I couldn’t talk, since before everything. And you know, it’s risky and I might have pain after and because I already have pain it’s too hard! (Never mind that by already having dealt with chronic pain, I have support already in place and am equipped to deal with it.)

Continue reading The Assumption of Autonomy

That’s not how it works – Conversion Disorder edition

TW: conversion disorder, discussion of psychiatric illness

Spoilers for Chicago Med episodes 1×08 and 2×17

 

So I like to laugh (inside my mind) at medical shows. When I watch more than one at a time (e.g. Code Black and Chicago Med), I see how they often have patients with very similar stories and conditions within a very short time, if not on the exact same week. I see how the patients become the B-story foil for the doctors’ emotional arcs, I see quite a few variations on ‘that’s not how … works’ – things like sterilisation (or lack of), ER doctors overseeing day-to-day care on long-term or chronic conditions, rare conditions being instantly diagnosed and cured in 40 mins.

 

Last year, I was actually really excited to see conversion disorder mentioned on Chicago Med, although I agreed with the rather loud internet reaction at the time, that using it the way it was used wasn’t responsible and devalued an actual real physical diagnosis.

 

Since then I’ve been put firmly in the position where my real physical issues have been flat out dismissed because I have a diagnosis of conversion disorder. Everything, even things which predate the incident which supposedly precipitated the conversion disorder, is written off by my psychiatrist as psychosomatic – sore throat and low thyroid levels? just my brain not wanting to talk! – I can really understand and empathise with that position. Except my psychiatrist, somehow, positioned himself as directing my physical care as well, which has actually prevented me getting physical medical care, and so I’m the other way around from what was in the show.

 

Now, it normally takes a few seasons for these types of shows to begin repeating themselves, except for things which are really common or dramatic (pregnancy, heart attack – things which function as plot shortcuts that most people understand), or are things which are repeatedly shown so that viewers learn them as plot markers (for example, dead body + broken hyoid bone = strangulation, even though that’s not strictly true in real life).

Imagine, then, my surprise when the new episode of Chicago Med pulled it out again.

SPOILERS below the cut

 

Continue reading That’s not how it works – Conversion Disorder edition

Small Things

I’m so excited right now and nobody seems to get it.

 

Last September I was meant to be referred to the public pain clinic in the hospital where my psychiatrist is. It didn’t happen, which I found out in, like, July. I did not want to go to the one the gynaecologist of doom and dismay and “it would only bleed for max 2 weeks” recommended, because it’s too far for me to get there on my own. I got referred there anyway, and they started ringing me at all hours. I kept saying no, and agreed to see someone else, but instead, I got referred to the first one again, so they kept ringing, as if by peer pressure they could suddenly make the words come out and in order.

 

But yesterday? I finally got told that a referral would go through to the one I agreed to see instead, in July. It’s November. I really want to go to the one in the hospital, because, you know, it doesn’t cost $300 an hour. They have a waiting list, and apparently I’m not allowed to be on a waiting list, even though if I’d been referred fourteen months ago, I’d be at the top by now, not being harassed by pharmacists. (Yesterday was “don’t be afraid to tell the doctor how much you’re taking so they know how much pain you’re in”. They know. We’ve tried everything else. That’s why I have to go to someone who’s allowed to prescribe things that are restricted.)

 

Yay?! It shouldn’t have taken this long. It shouldn’t have taken me dragging myself in with a migraine and everything except the abdominal-no-pelvic-no-muscular-not-neurological-now-neurological-because-not-endo-and-one-test-to-rule-them-all at “worst send help and kittens on ice” levels for the psychiatrist to go from “you’re probably addicted to the pain medication” to “well, we can’t do anything about that because you obviously need it”.

 

Well, der.

 

And then I even got a blood test! Imagine that! Nobody’s doing regular blood tests. Sure, the fifth test in four years sounds like a lot, but it’s really not. Now I have a really pretty bruise in my elbow, because the needle went in sideways a bit and pulled, and so there’s a red line surrounded by bluey-purple, which is my favourite kind of bruise, and I totally get enough bruises to be allowed to have a favourite kind.

 

Meanwhile, one side of my neck is so swollen its starting to be visible even to people who don’t know me. But you know, that’s nothing. At all. As usual.