PTS*

cn: ptss, chronic pain, gender stuff (inc. references to surgery)

 

I had an appointment with previous-doctor last week. He somehow got hold of my test results, and despite trumpeting himself as a super-duper in-demand expert, said “well you have reasons to feel like crap”, “that doesn’t make sense you’re not fat and you don’t drink”, and walked out. He likes to walk out when he’s done talking and talk over me typing so I don’t get to actually ask questions. So I followed him out, signed the Medicare form, and the receptionist didn’t ask if I needed a new appointment so I didn’t make one.

 

Apart from that, I haven’t left the house in two weeks. I only just, two days ago, convinced myself to do the washing and wash the clothes I wore to the test. I didn’t check my email for over a week and I still have some that I can’t make myself read.

 

This would be a classic PTSS episode, but for one thing. I don’t know if it was the test that triggered it or not.

Continue reading PTS*

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Project New Doctor, part 3

CN: privacy, discrimination

 

Let me remind you that for a few years, I worked at a law firm – specifically in an area where I frequently had to deal with doctors and medical records. I do not think things have radically changed since then, and if they have it certainly hasn’t been publicised.

 

So, I went to check my mail today and had a letter from the hospital.

 

In this letter, they said they had been notified that I had changed GPs so they had sent my records to “facilitate [my] ongoing care” and when I was next in the hospital I had to tell them who I wanted to notify in future so that the correct GP was informed.

Here’s the problem – I haven’t changed GPs.

Continue reading Project New Doctor, part 3

let us not be calm today

CN: more codeine drama

And in an epic bout of cluelessness someone just told me to “calm down” because the RAGCP said the letter was unhelpful and doctors rarely get deregistered anyway so it’s just hype and nothing’s going to happen.

 

Except it’s already happening.

 

And unless I can somehow find a new GP within 10 minutes of my house, find a thousand dollars to pay for the specialist and food, convince the pain specialist to let me communicate (and get there), all in the next week, it isn’t being undone.

 

Look, even if my ‘I want to get out of here *point to time* *leave*’ appointment ends with the GP saying ‘sorry I panicked, we’ll work this out over time’, the fact there is that he made this decision for me based entirely on his fears and not my needs. He destroyed any trust I had for him. I would be looking for a new GP anyway. Previously, I’ve had time to do that – time to go and look at the carpark and where I can get in and out since I’m not apparently worthy of a permit, time to look at reviews, time to prepare a summary and sort out clearly what I need so that I can present everything as concisely and smartly as possible, time to make the extra trip to make the appointment since I can’t ring… that’s time I wasn’t given here. I can’t gradually do that while still receiving care, and I no longer have the option of ‘well that went to pot, I’mma take a few weeks to recover, just deal with the chemist, and do this on my own terms’.

 

I’m, weirdly enough, constantly praised for how rational I am in extreme circumstances. There’s no reason for ‘calm down’ or ‘just breathe’ or any of that, because that’s not how I function. And yet, that is what was said. “Calm down, it’s just hype.”

 

What ‘calm down’ functions as is a tool for minimising and silencing. ‘Calm down, it’s not really bad,’ as if someone’s only seeing how this works out really badly for them because they’re emotional. “Calm down, nothing’s going to happen,” as if nothing has happened already, and preparing for something to happen is in no way helpful (or itself calming, you know, how you can prepare for something and feel more confident about it because you got this?). “Calm down,” as if you only get a voice when you meet some invisible standard of behaviour and mental state and emotional presentation and anything else is dismissed. “Calm down,” says “your reaction you have is invalid and the only appropriate thing to be is in agreement with me”.

 

I’m not calm. If I was calm it would be worse, probably. But ‘calm’ isn’t the same as rational, or analytical, or educated, or careful, or reasonable, or anything else that generally gets attached to the things people say when they’re believed and not dismissed.

 

But this happened to me. “Calm down, it’s just hype,” ignores that reality – it isn’t hype, it’s not something that might happen, it’s something that has happened. It’s not something that being in a socially acceptable, narrow range of presentation is going to undo.

 

Today I slept for maybe two hours, watched two games of football, and told myself that all today’s things I was going to do – lodge an equal opportunity claim to see if it can get processed fast enough to make a difference if I can afford the pain specialist, write to the Minister, see if I can put the bin out now that I’ve spent two hours with ice on my shoulder and it’s dark out (my neighbour still parks their car out front and puts their bins in the rest of the space, leaving no room for anyone else, and two of us in this block have disabilities. It’s an ongoing drama) – can wait until tomorrow. I can then do one trip out instead of two, and post them, go to the doctor, go to the chemist, and buy whatever food I can afford (so, basically, none), and save what spoons I can for the gynaecologist. I made it a whole 18 hours without crying. New South Wales won State of Origin and I got to see it. All day, it was there in my mind, maybe I’ll phrase it this way, I should say that.

 

But now is not a time to be calm. Now is a time to act. Speaking here isn’t enough. Speaking to journalists isn’t enough. Reaching out to my friends and family isn’t enough. My cousin sparked a panic attack yesterday because she made a public share with a graphic which was the equivalent of “people who take opioids are a drain on society and deluding themselves”, after I shared an article about how the policies here and in the US are leaving people like me without access to medical care. If being angry, if being scared, if feeling threatened, if not being calm is the thing that gets people like me to speak out, gets them through finding supportive care (or alternatives, because seriously), or simply stops someone from giving up, it’s okay. If expressing something makes people feel like they’re not alone, if it gets them the resources they’re looking for, a support group, a small piece of fiercely prized independence, that’s good. These are things that “calm down” denies people, and these are things people need. When faced with such misguided hysteria, with mistreatment, it is not the time to be a socially palatable form of accepting. It is a time to take that “I don’t fit with your worldview” and make it so big it can’t be ignored. A lot of people are like me, and can’t do much – I have to prioritise the doctors I can afford, and be careful about how much I do so I can get there, so I can maybe survive a bit longer, but if these five thousand doctors each have five patients, that’s a small city’s worth of people doing a little bit, even if some of us cover people who can do less, or aren’t able to do anything at all.

But being calm, in the way that was said to me – “calm down, it’s just hype” – is to ignore the things happening to us, to tacitly accept it because it’s inconvenient for other people for us not to. That’s not good.

 

There are things people can do to help, who aren’t like us – if you know a doctor still willing to prescribe, tell people who need it. Signal boost (don’t appropriate, or say you speak for us, or start up an awareness community only to use it to whine about yourself). Don’t just believe what you’re being told – look at the statistics for yourself, and see the flaws, the multiple causes lumped in as one. Ask what you can do for people who may be losing their ability to care for themselves. Talk to politicians – if they can make special trips out to the boonies to talk about shopping hours, they can make time to hear about this from someone whom isn’t automatically dismissed by way of diagnosis or the taking of medication.

But do not tell us to calm down, that it’s not really an issue, that it’s the universal right thing because the government said so. No right thing involves a consequence where people are denied medical care, and their quality of life directly impacted as a result.

That is something that there is no need to “calm down” about.

 

 

I can’t even right now.

CN: codeine drama, disability discrimination, vague mentions of trans issues/surgery

 

I seriously have no idea what I’m meant to be doing right now or how long I have. Really.

 

I had just seemingly gotten past the ‘you know you can’t have these forever’/’okay what does that look like’/’YOU KNOW YOU CAN’T HAVE THESE FOREVER!!’ and into turning up, getting script, filling script, and not being terrified that I wouldn’t get the script. I had just started to be okay with regular doctor trips and I thought I could say some of the stuff that makes me sound a bit more like a hypochondriac, like the fact that I feel like I can’t get a deep breath and that my left side of my chest rattles when I move or bend a certain way, and I constantly have this pain in the back of my head that isn’t a migraine, it’s just pain, and…

 

Then I was told I had less than two weeks to find a new doctor because not being threatened is more important to him than treating patient – which is, essentially, what this boils down to: ‘We will be reviewing scripts that do not fit this criteria.’ That’s it, like. That’s all it took.

 

I was in there for over twenty minutes. I should still see the specialist in September. I should go see the specialist he already said wouldn’t help me and suggested I cancel, as well. I should just find another doctor.

 

The thing is, I can’t do that. It took me nine years to find another doctor who listened to me enough (he’s not perfect; he uses the wrong pronouns and the wrong name and can’t say anything concisely and wanders all over the place like he’s trying to justify this to himself rather than relay information to me, and that’s before I get into how I’m treated by the reception staff – suffice to say that being shoved in the quiet room for not processing information fast enough is the least offensive thing) to get things done. I’ve already tried everyone I can get to, and that range has significantly narrowed in the last six months. The landscape has now changed – as we know, some doctors (entire clinics, even) now have blanket policies of not prescribing, and now there’s pressure not to do so, and letters being inerpreted as threats. “Find another doctor who will prescribe it because you need it,” even if it was simply a matter of, you know, going to another doctor and them saying well of course I’ll do that, is a thing that takes longer than nine days – it can take records months, even years, to be transferred. And even then, unless things change, both radically and quickly, it’s, at best, a short term solution. But it’s not a guarantee. It’s not simple.

 

I do not have a disability parking permit. I do not have home help. I do not have a registered chronic illness plan, I do not have an NDIS plan, I am not on waiting lists. Every time I was told I had to come off them, I explained that I cannot care for myself without them, and no arrangements were made, no forms signed; I was given a script.

So he goes ‘what happened last time you had a day when you didn’t need them?’. That was well over two years ago. I haven’t had a day where I haven’t needed them since the Mirena screwed everything up. I will need them until I get off the waiting list for a hysterectomy, and then not having the hurty bits and not having the hormones will do more than medication ever could.

 

But I can’t make it until then without them.

 

I also cannot afford to see the pain specialist. Whom, I remind you, refuses to let me type, wants me to pay extra to bring a translator who can’t translate because I won’t be allowed to type, and whom the doctor said is unlikely to be helpful given that attitude.

 

So every time I was asking ‘what does it look like, not getting the script?’ I wanted to know what kind of help I would be getting instead.

 

The instead is, apparently, ‘find another doctor in less than two weeks’.

 

Since Tuesday, I have been having panic attacks. More than daily. I just had a shower and had a panic attack because I thought ‘in a few weeks I won’t be able to do this’. I burned myself yesterday and didn’t notice, because my hands were so numb. ‘In a few weeks I won’t be able to even cook’. I was trying to play a game and had to stop because even with brightness at a minimum, the light hurt too much. ‘In a few weeks I won’t be able to watch TV.’

Needless to say, I haven’t really been capable of going to find a new doctor, nor have I been sure enough that they’ll listen to me instead of putting me back on the mental health ‘if you just have CBT/schema therapy/see a psychiatrist/stop taking the medication you’ll be fine!’ – because I have been either asleep, shaking and crying too much to be able to stand (in a few weeks I won’t be able to stand), or mentally going through how or who or where the money will come from or…

 

I have a plan, kind of. I can explain to the chemist and ask if there’s someone they’d recommend. I still have a stash, so I have a bit longer, perhaps, but I can’t wait for an appointment. I have an appointment with the gynaecologist this week, and I’m unlikely to be able to get through it without breaking down, and that might get me moved up the waiting list. Not soon enough, most likely, though. And also, having to be able to go there means I basically can’t do anything else this week that involves leaving the house, lifting anything larger than a ball of yarn, or fine motor skills.

 

But there’s also the looming spectre of being housebound, unable to walk, unable to see, and no help – not being able to make appointments, and having them taken away; being unable to move and not being able to do anything.

There’s also the anger; I hate taking medication. I have been asking for alternatives and options and treatment and always been told things like ‘it’s working, so it’s fine just keep taking it’, ‘there’s nothing wrong’, ‘it’s too hard and it’s working, so keep taking it’, ‘it’s stopping your periods so don’t stop taking it’ (what if – I can’t even write that). There have been so many opportunities for me to get help, and it’s been flat out denied in the form of dismissal or violence or ‘you’d be fine if you just thought positive/got therapy you can’t afford because that totally works if you put more effort in than you already have because you just weren’t trying hard enough/did yoga and hugged trees/etc.!’.

 

There’s the memory, vague because my brain had basically stopped being able to function, of collapsing on the floor, dry retching from the pain, and passing out, after only three weeks of only taking ibuprofen. That was when it wasn’t this bad. Going back to that now is simply incomprehensible.

 

“Find another doctor,” isn’t simple. It’s so unlikely as to be impossible. And what it is, is the doctor placing the responsibility on me for his fear of being maybe possibly investigated because some random secret body is breaching patient privacy (oh yes, that’s a thing – did you know all your scripts, with your name on, are being collected and monitored? No? Well, there you go.) and interfering with treatment in a way which is simply not legally mandated and certainly hasn’t been publicised with enough warning to patients in order to preserve continuity of care.

 

Edited to add: Proof that it’s not just me!

Seriously, I reached out to people and they hadn’t heard of it, but…. it’s a real thing (and based on erroneous statistics, no less). And if the RACGP disagree with it, and are concerned with it, then I say that they should offer free industrial support to all registered GPs as an urge to not comply.

 

 

 

A Step Too Far

CN: sexual harassment/assault

 

There’s a lot of things going on. Specifically, there’s lots of men being disciplined, suspended, or sacked (or… resigning, prompted by a forceful request…) after being accused of, or having evidence of sexual impropriety released, in the media.

A footballer was suspended for sharing a picture of a woman without her permission.

Production was suspended on a TV show after the lead actor was accused of assault.

A producer resigned and parts of his company followed, resulting in withdrawals and shutdowns on several projects.

 

In one case, the only people affected were the perpetrator and the victim. The perpetrator was disciplined subject to the policy of his employer and their supervising company. The victim did not pursue charges in order to retain her anonymity since the picture was shared online.

In many other cases, there are more people affected; not just family members or friends of the people involved, but people whose only connection is that they had a job which is now on hold or gone. Their only fault, if they have one, is that they didn’t say no to taking the job, which in this climate, may not have been a viable option when juxtaposed with one’s need to have money for things like food. Some of those people did have the financial freedom and the knowledge to choose not to, and they chose otherwise in the first instance. But terminating that project now, even if it is a financial loss to them, is not a thing which just affects them.

Continue reading A Step Too Far

Why Boycott?

CN: SSM plebiscite, politics, homophobia

 

Unless you’re lucky enough to live under a rock, you have heard -something- about the Australian Government’s “brilliant” idea of getting everyone to vote on whether same-sex marriage should be allowed. You probably also heard a bunch of people saying the vote is rigged, that it’s defeatist, that it’s probably illegal but maybe not, and that it’s homophobic and causing real harm to people.

Antony Green points out that voluntary postal votes have lower participation rates, particularly among groups that might be expected to have more people vote yes. Michael Kirby, former Justice of the High Court, called it ‘unacceptable‘. It’s been reported that the organisation tasked with managing the vote isn’t up to it, but no alternatives exist. And, of course, now we’re being told that if we don’t vote, it’s our fault if the result is no. But it’s also quite possibly illegal, so.

After my experience with last year’s census, and remembering how my vote wasn’t counted since I couldn’t write neatly enough, being disabled and all, I don’t trust the ABS, even if they’re held to AEC rules, to pull this off. A lot of the damage has been done already, while this issue has been dragged out over years, and people are continually treated as ‘different’ and being ‘othered’ for existing.

While I’m writing this, an interlocutory hearing for an injunction against the vote is being held. I’m hoping PFLAG’s application gets upheld, but Kirby isn’t on the High Court any more, so, I don’t know whether it will.

If it doesn’t, and the vote goes ahead, I intend to boycott.

Continue reading Why Boycott?

Road Rage strikes again

TW: MVAs, verbal abuse, police people

 

I have my new computer at last and there are so many little things I know now to appreciate – a dimmed monitor, a seat that hurts less, an ergonomic keyboard…

 

This just means that I am able to relate to you today yet another example of why I, as a person with a disability/disabled person/neuroatypical person/etc., will go out of my way to avoid dealing with the police. A lot of little things happened today to put me out of my routine and in a different place at a different time for this to happen.

Continue reading Road Rage strikes again