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

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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

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

Big Pharma… we need a word

CN: doctors, medication

So I went to the other doctor today. This one is nicer, but really into forced tapering. Still no resolution or clear path forward. Bah.

 

Then I went to the chemist to fill my script for Nurofen Plus. They only had one. And I found out that I wasn’t seeing things or making up that it’s not actually very available right now, but now I know why.

 

The reason they only had one of my two boxes (of the two and a half I need per week in order to not be in as much pain), is that they’re making the new batch more expensive. The chemist said nearly twice as expensive. I’m already paying $50 a week and going without nice things like food I didn’t make and paying for electricity.

 

I doubt this is a coincidence, and of course, since it was previously OTC, it isn’t subsidised in any way, so that price hike is all on me. And while I might be able to afford it if I give up, say, more food, other people simply won’t. I don’t get pharmaceutical allowance from Centrelink (I’m not sure why, but I’m fairly sure asking for it will only get me in trouble, payment-wise and pain-wise), so it’s not something I can expect to be covered somewhere else.

 

This is going to see even more people like me not be able to manage. And there are a lot of us, and we can’t make ourselves heard. And because most of the people like me are like me in that they have pain that can’t/hasn’t been diagnosed, that is ignored or simply doesn’t get affected by anything else, I would suspect that it’s something that is disproportionately affecting people with disability – not that anyone in Canberra would care.

 

I have to go back to the chemist tomorrow, so that’s an extra trip and no hope of enough rest to dull the pain, but hopefully I will find out more. If they’re also reformulating it to justify the expense, I may be SOL.

 

 

This is what i have to put up with…

CN: medical stuff re:pain, gender issues, gender-affirming surgery, medication, discrimination, addiction

 

Right, well. Reminder! If you take codeine OTC and you’re reading this from Australia, tomorrow is your last day to get some. You probably will have to shop around, though, so if you’re like me and that would be much better done with assistance, plan for it. Why? Because in anticipation of the schedule change, many pharmacies have run out of Nurofen Plus and Panadeine.

As you know, I’m of the opinion that this is the least great idea ever had by the government and the TGA, since as I said, it takes away people’s ability to manage their own pain and forces more work onto doctors while they’re actively trying to get rid of it (and being underpaid, because of Medicare freezes, naturally).

 

There’s another reason for that than the ones I’ve already discussed in previous posts.

 

This one is called bias, or, as I prefer to call it, the twofold societal assumption that everyone who needs pain medication is a drug addict and that pain medication is never necessary for quality of life.

Continue reading This is what i have to put up with…

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