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.

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…