CN: codeine drama, gender issues (non-binary)
So many things, so tired.
CN: codeine drama, gender issues (non-binary)
So many things, so tired.
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.
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.
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.
I fully expect to get to part infinity (and will look up the unicode for the infinity symbol) by the time this is done.
Today I lodged another complaint. As you may recall, my previous attempt at attending the statute-mandated (it’s law that they can’t determine my claim without this) medical assessment had me spending spoons to get there, climb two flights of stairs, and find out from the office-sharer’s receptionist that the doctor was sick. (And then, my psychiatrist has misentered the appointment in his phone, so all my appointments didn’t happen. I just like, wandered around the city for fun and then couldn’t move for a while. I feel terrible spending money on takeout but at least I don’t pass out while making it, or use so much effort that the nausea counteracts the ability to force feed myself.) This was two and a half weeks ago, and I have not been notified of the new day.
My application was lodged in June. May. Sometime around then. I talked about it here, but it’s so long ago that the days are fuzzy and the main point is that this is a necessary step for my claim to be determined, and it’s been four months, and it hasn’t been done. The first time, they rescheduled it and sent me to the wrong kind of appointment. The second time, I got there and was turned away because they weren’t expecting anyone who couldn’t speak, and oh, it was the wrong address anyway. The third time, the doctor was sick and had absolutely nobody to replace her. I was assured that her actual receptionist had let the department know and I wouldn’t be in trouble.
They also send these appointments by snail mail. I like having snail mail letters for my appointments, because I can go in and show the reception person and I don’t have to write ‘hi my name is k and im here for an appt please know i cant talk etc’. But I also like having lots of notice. If I had lots of notice, my mum, despite how I don’t want her making this about her, could come with me. It looks different if someone else drives me there to how it looks if I get there on my own, if someone has to sit with me and i sign to them and they talk for me. (It also usually results in people not taking my phone away from me, and ignoring my attempts to get it back because “but I need it! I have to copy down everything you typed!” because apparently providing a computer on which a word processing program with a save function is literally too hard for everyone but my psychiatrist, who just doesn’t read what i say.) Snail mail? Not much notice. And I’m meant to call them to reschedule, when they schedule appointments in the middle of my night. I’m not sure what part of delayed sleep phase is so hard, but I have it, and I’mma not be functional at 11am, because that’s like 2am, with all the non-dsps-people-awake-all-night-but-worse-because-aura-from-not-being-horizontal that goes with it.
It’s not very great. I think it’s designed so you get so frustrated you go get a job just so you don’t have to deal with them any more, except, of course, there are no jobs. There are, especially, no jobs that don’t involve sitting, don’t require a ton of computer screens, don’t involve typing or lifting or walking, that don’t involve talking, that don’t come with inbuilt ‘but you don’t look sick!’. If there is a job, it requires business hours, or its full time, or doesn’t come with unlimited flexible paid leave for those days (all days) that seeing isn’t exactly my best skill.
It’s not like I don’t work, either. I post here, when I can, and it dosn’t turn out a mess of letters. I make sure my mum isn’t dead on the floor and apparently I even occasionally help out at church (and fervently wish that it was appropriate to stab the men who think that my presence there is a consent for them to touch me, because stabbing someone who grabs your arm and pulls you in because you’re pretty isn’t generally considered acceptable at a funeral). I try to keep my house not a mess. I try to cook and usually it’s the same thing over and over. It’s just not paid, reliable, income-generating work that’s covered by a union, is 38 hours a week, and is socially considered a ‘job’. The other thing that’s really annoying, with doctors and government and everyone, really, is that they think being not in a socially acceptable ‘job’ means you’re available all the time. We’re not. We need notice, just liek normal people do. We mau have to reschedule other appointments, or find someone to drive us, or have a routine task that would be detrimental to skip (like, say, sleep). We may be in unpaid work, or forced to ‘volunteer’ to earn our basic income (that we’re meant to have a right to, if we live in a society that has welfare systems in place). And, on top of all that, we have to prepare and plan so that we can do the thing in our condition, whatever it may be. I have to make sure I have enough medication so that I can not move after and not end up in worse pain, and rest before so that im not so exhausted and to minimise the impact of my aura, make extra sure o avoid triggers, etc etc. (Sceince apparently tells me that i have a genetically high pain tolerance, and that people with my profile typically underreport pain. Huh.) I have to have three hours to get ready before I leave at least an hour per ten minutes of travel (up to twenty minutes). I have to make sure I have medication with me, whatever documentation is required, plan what i want to say and take that with me… you know. Stuff. Stuff that takes time and energy. And, in a world where consideration would be a given, sufficient notice for that would be given.
In other news, today I went into a shop! It was exciting! Normally I get stuff sent, but this particular product was unable to be sent. Except, the internet said it should have been waiting for me three weeks ago, and somehow, it was not. I went in with a note asking about it.
‘Are you deaf or mute?’ the dude said. His name was Jeremy. I held up 2 fingers. He thought for a minute. ‘Mute? I had to think there. That’s good, because if you were deaf I wasn’t going to talk, because like, that would be talking to myself.’
For a while I was so excited that someone asked instead of just assuming that I’m deaf because I have a note. (Things I overhear should be a post sometime. ‘She’s deaf and dumb, shouldn’t be allowed outside,’ was a recent one.) And then I was like ‘wtf, why should I be excited? What’s so bad about talking to a Deaf person?’ He also tried to hand me a piece of paper tow rite things, because, obviously, everyone can write, right? (The doctor tried this. I had to write in the waiting room in front of everyone and of course, that was humiliating. And it was just because she couldn’t be bothered looking up my birthdate on the computer, while my file was open.)
Deaf people who can’t lipread will usually tell you what they need. And, like, to answer the question? Obviously I was able to understand it.
So, today was meant to be my DAM. Remember, last time I got there and they sent me home because they weren’t expecting anyone? And they rescheduled the time before and sent me to an employment services assessment instead?
To attend today, I had to start getting ready at 5:30am. I left just after 9am. I got there at 10:45am, after a delightful display of misogyny in one of my breaks, because, remember, I can’t drive that far in one go (I’m actually sitting here, icing my back, because it started with the stinging red pain and if I don’t stop it then I won’t be able to walk). They told me the doctor was sick but it would be okay because they let the department know and someone will be in touch to reschedule.
It’s been four months since I applied. This is a mandatory, statutory requirement. It shouldn’t have even taken four months to get an appointment.
But, you know, they sent me to the right place this time? Last time it took six weeks for them to reschedule. I can’t wait another six weeks. The cynical mother-voice is like ‘they’re making it hard so you quit and get a job because they don’t want to pay you’. Which isnt right either – I havent been able to knit in two weeks because of the pain, and that’s knitting, the easy self-directed mini-business that’s been my ‘plan’ every time someone asks about retraining. It’s no longer a thing I can reliably do. I don’t have it in me for office work – I’m not even awake long enough to put in 38 hours, let alone spend 3 hours getting dressed each day and travel on top of that. I can’t hear now, which nobody cares about. I’m in the 15th week of a fever. Because of the slight issue with accidentally offending someone because I pointed out it’s not okay to randomly sexually harass people, my entire routine is upended because now I not only have to go elsewhere (more expensive, and, where is the money coming from? It’s not, is it?) but I have to go twice a week, because that’s how they do it. Or something.
The psychiatrist continually tells me that people with my condition know instinctively what they need to get “better”. I know I’m not getting “better”, that I need to adapt, to have my routine and sleep at the best time for me and to, above all, not get dragged all over the entire city by doctors who think that ‘not working’ = ‘available any time at short notice’. I need to be left alone.
Clearly that’s not happening, becuse the psychiatrist contradicts himself by pressuring me to try some new thing or another like five minutes later.
But, like, four months? For a DSP application? Even if I could eat, I haven’t been able to afford it for half that time. The kind of people who are affected by these delays are exactly the kind of people who can’t find alternate income to make up the difference, even if they were allowed.
And of course, nobody told me in advance.
TW: discussion of externalisation therapy, discussion of and description of treatment of personal/sexual violence victims, rape and rape aftermath, references to paedophilia
I think someone was trying to be helpful when they said that all my entries are about how other people did things to me and I should accept responsibility for it instead.
Accepting responsibility for things is how I got here. Half the point of this is to recognise when things come from other people, and that I am not responsible for that. Sure, I notice more of the people who behave that way, but it’s not like I make them that way, right? I don’t, so I won’t take responsibility for it.
Like, say, the psychiatrist is completely off down a track which is not right for me, which comes right after he says “people with your condition instinctively know what they need” and then refuses to listen to what I want, because he has decided that this other thing being fixed will make everything else all go away. I have another appointment with him, because the power went out halfway through and it was faster to make a new one and get out than try to explain that he wasn’t hearing me (reading me? understanding?). That’s not my fault for not being able to make him understand – that’s his fault for not listening, for making up diagnoses and holding information back from me (like, you know, test results), for dismissing me when I tried to ask him for help.