a marked lack of progress

CN: more codeine drama, accessibility drama

 

I am convinced that the GP did not want to see me today. First, there was conveniently a mix up and someone had an appointment not on the schedule, then when I was stumbling in to the office, carefully not bending my knee so i didn’t, you know, fall, he was off chatting to every other doctor there.

Continue reading a marked lack of progress

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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.

 

 

With a Whimper, not even a sound

CN: moar chronic pain vs codeine discussion, discrimination, 

 

So as you know, codeine was shoved off onto prescription only as of February of this year. That was five months ago. I told you at the time that a previously considerate GP turned into a threatening ‘you really only have anxiety’ monster after a single telephone consultation with the state rehab people, because “the head doctor” said people only take codeine because it hides anxiety and pain will go away with mental health treatment. You know I was lucky enough to find a new GP, who initially gave me not a small amount of grief, but settled into prescribing me just-under-two-weeks worth every two weeks and didn’t ask where I made up the rest. You know he found something actually wrong, for which I’m going through testing, waiting, and more waiting.

 

You may have even gathered that things were looking better for me – I was establishing a new routine, I wasn’t terrified of going to the doctor because I didn’t know if I’d get a script or have to fight for it or go through another unwanted, traumatic test in order to get it.

 

Today, when I left the room, the receptionist kept offering me tissues and then, instead of letting me type to her, shoved me off into a private room and locked me in.

 

Clearly, something changed.

 

Continue reading With a Whimper, not even a sound

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?

Pharmacist woes, again

TW: discussion of medical examinations

So, today I saw the pain specialist, at long last. (Recap: I was meant to be referred in 2015, which didn’t happen, and then I was referred to one that was too far away for me to get to after I said I wasn’t going and wanted to go to the one in the same hospital where my psychiatrist is for reasons of being able to get there, and finally that happened and then I had to wait and yeah.)

 

Nothing happened. He examined me with my corset on, so obviously, he thinks I’m able to stand straight and all, what with, you know, 22 spiral steel bones holding me up by the grace of a really long shoelace. (I specifically asked the psychiatrist to tell him no other people present for the exam, too, and he just had to bring in one of the reception ladies to stand and stare at me while I was put through positions. I don’t think people realise that’s more mentally destabilising than just getting the exam over with.) He didn’t explain anything that he was doing either, which I hate because it feels like being put on display, and I’m so done with being the for-show-sub.

 

So on the way home, I had to get more pain meds, because nothing happened. He has to think, you see, to make sure he doesn’t give me anything that will have more chance of killing me than what I’m on. (Bear in mind, the only restrictions on what I am on right now are that it’s an S3-pharmacist only medicine, so it can’t be sold in supermarkets, and it can only be sold in packets less than a 5-day recommended dose. That’s it. All the rest of it is just pharmacists making things up and people being paranoid because a super-tiny percentage of people who put up with the dehumanising rigmarole and purchase it legally may end up addicted. Studies put this at 3% of users, with 30% becoming physically dependent, which is not addicted. Addiction is when use of it impacts the ability to live a normal life, such as not buying food to afford it or stealing money to get it, and it’s often characterised with increasing use, hence the fear that it is a gateway drug. Physical dependence is when quality of life is compromised without it because the body needs the effect of the medication, like how people who are on blood thinners or heart medication have to taper off even when switching brands, so that the things those drugs are meant to control don’t get out of control.)

 

It’s been a while since I have had to speak with a pharmacist to get them. It’s also been a while since I’ve had access to my printer, since I’ve been in too much pain to reliably trust myself to set up my new computer, so my note looks a bit old.

So today the assistant takes off to the back to ‘run it past the pharmacist’ and comes back a few minutes later, hands my my note, and someone has written the date on the back.

You know, rather than asking me anything so I could say ‘I just came from the pain specialist and I have to stay on this until he confers with my other doctors to decide what to give me’, they just decided, on their own, to write on my property, so they could track my purchase habits (not my usage), without signing up for MedsASSIST and thus ensuring I wouldn’t go there (because MedsASSIST is a huge violation of privacy and now entirely pointless, since my medication will go prescription-only next year. Apparently the government thinks a year is enough for everyone to get through to the proper specialists and get a diagnosis and get functional. I’ve been unable to work for four years and I’m only just now breaking through through sheer refusal to accept anything less than compassionate, informed treatment.) I don’t actually think I was meant to notice. It was on the back, in tiny writing, in the corner.

 

But I don’t get this thing at all. I mean, sure, yeah, I complained the time a pharmacist called me an addict to my face because people with migraines can’t have excruciating, sleep-stealing back pain. I think that was justified, because it wasn’t compassionate, and the pharmacist missed a huge opportunity to actually try to find out whether there was something better or make sure I was aware of the risks etc. (I got lectured on those again today. Yes. I know ibuprofen is bad. Paracetamol is worse for me. Yes, I know codeine sucks at relieving the pain I have. I haven’t been offered or able to access anything else.) Today the pharmacist wouldn’t even talk to me. The only contact with a pharmacist I have had at that pharmacy at all in the last six months is one time he came out and asked how many I was taking, and when I said he told me I should tell my doctor. I wondered what he thought I’d been doing, over and over and over again. And again. “Just eat more!” Except eating hurts, I’m not hungry, and now swallowing hurts because something in my neck is swelling like a big stupid grape. I have had pharmacists yell at me from behind the back counter where, of course, I can’t type to them. And they thought having a system of tracking medication would work? Why? Because it meant they didn’t have to talk to people. It’s the only conclusion I can draw. Pharmacists do not want to talk to me. At all. But without talking to me, they can’t do the thing. They won’t let me go in and buy what I need to survive until a doctor listens and lets me say all the things and finds the magical right solution, but they won’t talk to me to find out whether there’s anything better that they will give me without less drama, they won’t listen if I do get the chance to try to explain or ask. (I remember one time I went in and asked if there was anything else I could take, and we went around in circles for half an hour ‘I can’t give you codeine’ vs ‘I know that because I am asking for something that isn’t codeine’.)

 

And then there was the time where they wouldn’t give me my meds because they didn’t know if I wanted the generic or not because questions end with a question mark.

 

I am likely to get fibro meds and I have to keep telling myself it’s just a few more weeks of being treated like a subhuman for having pain.

 

I honestly don’t know if I can last. It’s not even that the opioid-suppresses-respiration thing is kicking in, or the pain is ridiculously worse because of the heat, but I just want to go in, get my meds, and come home, without drama or people trying to spy on me because they think they know my body better than I do when I’m the one stuck in it and they won’t even look at me.

 

(And, for the record, I can’t buy online, because the online ones don’t have ingredient lists, and about three hours of increasingly specific and weird searches leads me to the conclusion that not only are they three times more expensive than purchasing them legally, they have lactose, which means if I don’t throw them up, I won’t be able to breathe, because lactose comes from milk and I am allergic to milk. Being allergic to milk and therefore not even being able to walk down the cheese aisle without nausea and itching does not make for lactose intolerance. This is a backdoor PSA. Adults can be deathly allergic to milk.)

 

And now, because my life is not my own, I have to go tell my mum everything that happened in exact detail because she’s the only one allowed to keep her medical issues to herself.

Good News!

TW: female body issues, anxiety

 

I am officially old enough to be taken seriously when I make a decision about my body. You know, the one that is like ‘I do not want kids ever, I will kill myself if I have another period ever, the wacky hormones this body likes not having controlled are making my anxiety worse and I would like them to go away, please take out the thing that makes them’.  It wasn’t the most perfect appointment – despite telling me to make the appointment myself, the GP sent the referral anyway, so the appointment was made for less than two weeks away (which is now today, because I totally abandoned the internet for a week in favour of Final Fantasy XV, and there will be a post on that so if you haven’t finished the main story, get on it), and my psychiatrist didn’t know about it and had two days to send the ‘this is what is needed to facilitate best communication and this is where we are at in diagnosing things as either brain or not-brain’. Naturally, that didn’t arrive, so I got there and had to type on my phone, which means all statements must be Twitter-style brief and concise, which I am terrible at. Luckily, I took a summary of everything-since-I-was-12 and that answered most of the questions, so it wasn’t a disaster.

 

However, despite being old enough to say ‘this is what I want’, I now have to see not only my psychiatrist and return to the GP to get both of them to sign off in writing, I have to see another psychiatrist and another gynaecologist, so they all can sign off. And I can only have half of what I want (a partial hysterectomy, because they won’t take out the ovaries because they make the hormones which are causing the problem), anyway. And you know, it’s the law, so we have to cover our arses, you know “in case you change your mind”.

 

Which, I won’t. Obviously.

 

So now I have to pay for all this.

 

The good news is that I can, kinda. Medicare pay for some, private health pays for some, and the rest comes out of my shiny new disability payment. Turns out, I didn’t have to go to the appointment in the first place, or something, or something else, which I don’t know because I can’t call them and I only know this because I got a response to my third complaint which said “your issue has a resolution, please call if you want to know more”. And then! Money! In my account! Enough to pay down my credit card, pay for the gynaecologist, and buy a Christmas cake. And I can send presents to my family now!

 

And I’m just going to go back to Final Fantasy, because I am being very calm, because my head hurts and I’m terrified this won’t happen before I either need a new Pap smear, need a new Implanon, or get the period-after-the-Implanon-has-been-in-for-a-few-months. I know it’s coming, because my head hates me and I’m bloated rather unevenly and I haven’t even been able to keep my bi-weekly vegan alfredo down. I don’t know when.

 

But apparently, according to the gynaecologist today, I look 21, so. And I’m also meant to stick with my current pain relief regime because it’s good for me. You know, the one I routinely have trouble purchasing.

 

 

 

Yeah.