highlights

CN: codeine drama, gender issues (non-binary)

 

So many things, so tired.

Continue reading highlights

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Sometimes ‘funny’ is the only word

CN: discrimination moar codeine drama, stigma due to mental health/gender

Remember this? The doctor firing me after I walked out after being told I couldn’t have the script I was already told would be provided, and not being allowed to talk?

 

So I complained about it.

Continue reading Sometimes ‘funny’ is the only word

before and after

CN: medical care with gender non-conforming body, disability, accomodating disability and medical procedures, mentions of sexual boundaries being violated, body image issues 

So the MRI went as well as I expected – that is to say, not well. I was not allowed to lie on my side as I asked and so, apart from running out to get meds the day after (which was not fun and extremely difficult for me, to the point that random strangers insisted on ‘helping’ and making things worse) I have been stuck at home all week, not able to cook for myself, walk unsupported, shower, stay awake, or see unimpeded. It has been six days and my legs and feet are still burning, my back still aches, and the band pain kicked in last night, so at least I know it’s peaked now.

 

But on Tuesday I have to have an ECG (electrocardiogram). My echocardiogram from 2014 has gotten lost to the annals of time, and the doctor who ordered it is about as good at sending records as he is at diagnosing chronic pain, so it’s as good as never having existed, except for the utterly dehumanising experience burned into my memory and the report which I know I saw.

Continue reading before and after

…Diagnosis… again…

CN: medical stuff, discrimination

 

Today I meant to come home from the doctors and explain exactly how the change in schedule for codeine has only made things worse not better. I was going to talk about how all these extra trips to the doctor mean I don’t have spoons to go food shopping, how the anxiety about going to the doctor and the chemist and whether I’ll be able to get my dose and how I’ll be treated is amplified (even after the police incident, yes, it can and did get worse).

 

Instead the doctor came to collect me early and started talking about the possibility of autoimmune disorders and rare genetic diseases and admitted that he expected to write me a mental health plan and pack me off to the psychologist but instead he’s so stunned that he found something that has a name that I shouldn’t have false hope but I need to do my third round of blood tests in four weeks as soon as possible because if he can’t confirm the diagnosis I might die because it’s gone untreated for so long.

 

And I’m really not thinking anything other than nothing and the occasional ‘I’ve heard this before… haven’t I?’ Because I can tell you right now, since this is my eighth GP in like… five years, that saying the schedule change was meant to push people like me to get proper treatment is absolute bullshit. Since the schedule change I have literally been fired by one GP because I stood up to him and insisted it wasn’t psychological and that he needed to treat me like a person not a stereotype, and before that I was routinely and repeatedly dismissed, told I was making it up, told it would go away if I ate more/drank more/took the piercings out/had schema therapy/saw a speech therapist/saw another psychologist/etc. I would have made it to this doctor eventually, or another one who listened, whether the schedule changed or not. But a doctor listening to me, taking the time to actually run tests and check out my symptoms, is not something that happened because codeine is harder to get. It didn’t happen earlier because doctors and specialists assumed that because I looked female and had a rare symptom that it must be psychiatric, and didn’t look. And that not looking has permanently compromised my ability to have an unimpeded quality of life, and that also has nothing to do with whether I can access the tools to manage my symptoms on my own or not.

 

With conversion disorder, the diagnostic standard is to have had between 2 and 10 negative results for other things that are frequently misdiagnosed as conversion disorder (e.g. MS, Meniere’s, lupus). I had a WorkCover claim.

 

There is no way for me to sue the doctors who did this to me. I would, if I knew I could – if I didn’t know it often took seven-ten years, involved medical panels and extra testing and more money put in than coming out. But even if this next round of tests is a red herring, the fact that something was found, that something that has a name and diagnostic criteria that fit me was never looked for or considered, is something that I would hope haunts them, in some dark dull way that means they never, ever, let someone else go untreated.

 

And yes, this whole process has been far more stressful than it should have been.

Let me tell you about today

CN: doctors, chronic pain, codeine drama, mental health, discrimination

 

Today is a sunny 40 degrees, give or take a few due to ambient heat, concrete jungleitis, cloud cover, and the fact that it’s the fourth day in a row of this. This means, for me, if I go outside, unless I put myself through more agony by not wearing my wrist bandages, ankle bandages, or corset, I am very hot. I cannot see without sunglasses, and if I take them off, I instantly feel like my eyes are being dug out with an icecream scoop because light-sensitivity does that, and today I woke up with my back still feeling split in two. I know, when I get home, I’ll have a few hours of uselessness as the band pain settles in, and I won’t be able to eat or drink without throwing it up. This summer, chest pain in anything over 30C set in as well.

This means that today, it was not easy to get to the doctor. It was painful, and difficult, and on top of that, I was hoping the last appointment was a brainfart and things would Get Done this time.

Well, thank goodness I started seeing another doctor, because that last thing? I was clearly wrong about that.

 

Continue reading Let me tell you about today

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