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

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Quick note…

To the pharmacist at the first pharmacy I went to:

A hemiplegic migraine is one of the many definitions of ‘not okay’.

 

To the pharmacist at the second pharmacy I went to:

Yelling across the store at me does not mean I can understand you.

 

To the entire staff at the pharmacy the second one sent me to:

Me limping does not mean you need to stop me in the middle of the store to take the script. The man already in the store who says it does because he tried to attack me in the carpark because of it? Does not tell you what I need. If I need something, I will find a way to ask for it, and not asking? Means I don’t need it, especially when it draws attention to me through your actions disclosing my disability to everyone in the entire store.

 

And because I had to go to three pharmacies, I ran out of spoons and petrol and have no food. Good job, government. Good job. /sarcasm.

Choice, or lack of

CN: medical anxiety (inc. discussion of coping mechanisms), discrimination, workers compensation

 

Things have been strange this last few weeks. After going around saying ‘nobody’s even done a blood test since x’, I’ve had at least one diagnostic test every week since January. Naturally, I’m not coping too well with all this – my back just never stops hurting, my patella keeps slipping out, my shoulder feels like it’s been punched one too many times, and I don’t seem to be able to focus on anything for more than an hour at a time, which isn’t great when you’re heading into dungeons and wake up two hours later to find the timer still running (and so many games now seem to have forgotten the auto-pause functionality, devised just for that eventuality). I have had to go back to ordering food delivered simply because I’m not capable of lifting or stirring. I haven’t had that nice long rest that I like to have between stuff, so I’m not recovering enough in between to keep this sustainable.

But also, after several weeks of ‘we don’t really need an MRI and Medicare wouldn’t cover it anyway’, suddenly I do qualify for an MRI under Medicare and it was ordered for me without so much as even a ‘can you do that?’.

Continue reading Choice, or lack of

Compassion is indeed dead

CN: disability discrimination

 

Today I had a task – make appointment with specialist for urgent test.

 

I wrote out my letter, as I always do, with my name and that I want to make an appointment and asking for accommodations for my disability and for a copy of any forms so I can fill them out at home since I can’t write very well. Armed with my letter and the referral, I fought against rush hour traffic and made it in at around 4:45pm.

 

Well, first the receptionist took my letter and walked out on me.

Continue reading Compassion is indeed dead

…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.

There’s a wonder of a thing!!

 

Today I received a letter from my former doctor, telling me that because I complained he can’t treat me any more so he’s cutting off the relationship.

 

I was so angry, but now I think it’s hilarious. What part of walking out after being told I was not allowed to talk implied that I had not already done so, exactly?

 

If this is how people feel when they’re denied care on religious grounds, then I’m on their side even more.