here’s a thought

There should be a reality show.

 

People with chronic pain that is “too hard” or “unspecified” or “weird” can go on, and if the doctors at a carefully selected, high-profile hospital (or a stable of specialists, w/e) cannot diagnose them or improve their QOL, the studio pays for lifetime care and ensures access to pain meds and mobility aids, etc. including access to these same doctors so there is continuity of care.

People would also have access to non-judgmental mental health support, where “it’s just conversion” is a banned phrase.

In exchange, people would have to grant access to their medical records for, say, 2 years prior to their show (2 years being the period for Centrelink use to decide that an illness is permanent), allow testing by the studio’s doctors (this would prevent people just trying to get $$), and agree to be filmed, though their identity could and should be protected.

Maybe then, people wouldn’t be left without access to treatment or medication or be forced into treatment they don’t want, tapered against their will, or otherwise harmed.

 

(Maybe then doctors would just say ‘if you want that apply for the show’ and cut people off anyway, but this is meant to be optimistic.)

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Risk

CN: moar codeine drama; gender-nonconformi-ness and medical care, mention of genital-related medical issues

 

I saw a different doctor at the same practice. He was nice, apart from two things

  • the guilt trip and ‘you know the risks’ talk, when by now if they really think I don’t know that medications have risks, they should be sending me for a capacity assessment…
  • ‘she’ and ‘Miss’

Continue reading Risk

invisible

CN: moar codeine drama, doctor angst, medical anxiety, disordered eating, panic attacks

 

I saw the doctor today. Last week it was ‘try Panadeine, obviously if you’re still allergic you can’t have it, but try it!’. So instead of seeing my family and having an actual Easter, I spent the weekend having an allergic reaction to paracetamol, something which was diagnosed by an actual real doctor a whole three and a bit years ago.

Continue reading invisible

i am crushed

CN: moar codeine drama, discrimination, disability, medical stuffs as gender non conforming

 

I got home from the doctors two hours ago and I have not stopped shaking and cannot seem to stop myself from crying. I am, I think, in shock.

 

 

Yesterday I was planning to go visit my parents for the long weekend.

Now I’m not sure I’ll ever see them again.

 

It wasn’t a great day anyway, owing to an incident in the post office where I went to collect a parcel and they gave it to someone else, who then dumped it on the floor, kept saying it was theirs, and the post office clerk spoke to me like I was two – you know how people are with disabled people, when they speak slow and their voice goes up and they use simple words. I had to get down on the floor and pick up a box, oh, about the size of a television. Nobody apologised to me. I don’t do well with people touching my things in any case, but this was simply horrid. And then a man followed me out, yelling ‘can you manage’ and trapped me between him and the door. It was not the best foundation.

Continue reading i am crushed

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

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.