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.

 

 

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Blah.

If you look back, you might see a few posts about the time I called the police and got screamed at because some guy was randomly scraping paint off the front of my house, and the police said it was strata so my male neighbour knowing about it was enough, even though I had already spoken to my landlord/parents and strata had been unable to confirm this was a thing that was meant to happen. Yeah.

Continue reading Blah.

it never ends

TW: privacy, dentists, grief, references to inter-family abuse

 

So, I managed to get home for my grandmother’s funeral after all. This came about because, by virtue of not driving the six hours each way to collect me, my mother attended the meeting with the funeral director and took the responsibility of organising the priest and so on. (It was also necessary that she attend since she’s the one who has the lease on the grave, but such practicalities don’t actually rate as necessary when one isn’t thinking rationally.) A few days later, she offered to pay for a flight down, and then couldn’t understand why it didn’t cost several thousand dollars.

Then she admitted that she hadn’t wanted me to come because she thought the funeral would be too short to be worth it and she didn’t want me to remember it badly. (Or something, I mean, seriously?), and then that she should have handled arranging things better rather than letting everyone else take over, after it came out that other people were upset about it too, but too afraid to speak up, because about the only thing that part of my family doesn’t do to each other is resort to physical violence.

Continue reading it never ends

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.

 

 

 

Disability, woo! pt n

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.

 

Ugh.

Let’s talk meds again

You know, I honestly thought that the ‘you must show ID to get your meds’ thing had gone out, because I went for a month without being asked, and having literally no issues at all in getting it.

 

Then, last week, on the way to the show, I was asked to show ID. The pharmacist acted strangely, staring at me from the back, and making motions to come out from the back, except she didn’t, and I got my meds and went on my way. Then, after I had to stand in line for three and a half hours, I was grateful to not rely on the single dose I had left to get through the night. Trust me, standing on various configurations of pee-stained paving, cement and lino-covered-cement for that long, while wearing a corset that still doesn’t fit right because it was broken in before the IUD-induced breast explosion, and therefore doesn’t give quite the support it used to? Yeah. I still haven’t recovered.

 

So I had class today, and class is generally my standard point of ‘get meds’. Today, my regular pharmacy had run out of everything but the 12-pack. Now, let’s be real, in my current condition, with everything that I need to be functional for, that’s a day’s worth. If I’m lucky, it’s a day and a half, in between the parts where I make it a whole eleven hours before passing out for six, because the pain overwhelms everything and then I have to deal with the consequences of passing out on carpet-covered-cement, and the occasional ‘oh wow it’s been four and a half hours since i took it!’ generally involving either lost time or ‘yeah, i can’t stand up right now’. Now, I have half a packet still at home, so it will get me through until the next time I leave the house, because apparently, even though shows are a disaster and I swore them off, my presence at concerts my friend is in (my only RL friend! wow!) is still mandatory, so I have to go out on Friday. I can get to Friday.

 

So, with my insurance comes a discount membership for Other Pharmacy. I stopped going to Other Pharmacy a while ago, because their terrible service involves overcharging for bandages (three small packets and one big packet? sure, let’s scan four big packets!), denying medication if you are purchasing a pregnancy test at the same time (it might hurt your baby! even though you’re infertile and it’s not for you!), and my personal least favourite: ‘we’re open every day so you can just come back when you run out’ rather than letting an adult manage their own OTC medication (and yes, we are talking about what is legally OTC medication).

But today, I braved it, because if I could get another packet, then I could go straight to the show on Friday, straight home, and get through to Monday. I’m a huge fan of forward planning and minimising times when I have to get a corset and get the car out and go to places where I get treated like less than a person. I also prefer to have a spare packet for days when I run out but I’m not capable of going out, which if I had another packet, I could put the 12-pack aside for.

So I chose a thermometer, because mine is old and this was given to me before digital thermometers came with replaceable batteries, and tracking my temperature on migraine days allows me to manage them better, and went to the counter with my note (remember, I can’t talk or write, but I can hear mostly fine, if I can see you and know you’re talking). The assistant took my note, took my id, entered it into the computer, and then said ‘Are you waiting? Will you wait there? Wait there?’, which was weird to me, because the pharmacist literally had just told her it was okay to give them to me and to put it in the computer. So I waited. Right there. Leaning on the counter, so my back wouldn’t hurt quite so much, and I could play on the table with my fingers, which I never noticed I do before recently and now it’s like all the time (yes, I’m probably autistic, I was tested in school but nobody told me the results, so all I know is that I got special assistance and skipped a grade). Eventually, someone else came out, and said they wouldn’t give them to me, because “you’ve been taking them a lot” and “you had some last week”. She pointed off to the side and wanted me to go with her somewhere.  I just kept signing over and over “I have a migraine I can’t talk”. She wrote down “has been too soon cannot dispense” and shoved the paper with me at a pen. I wrote back, “have migraine need now”, which obviously looked like chicken scratch. She went to the back and got the original pharmacist. “She’s stupid, doesn’t understand the message,” she said. The other pharmacist came out. I signed again. “Yes, I know you can’t hear, honey,” she said. “We can’t give it to you. You can have this instead. We need a letter from your doctor.” I tried to write that I have seen a doctor, but they didn’t understand. The other lady had retrieved a packet of Maxigesic, which is paracetamol + ibuprofen. I signed that I am allergic to paracetamol. They still tried to make me take it. I handed them the thermometer. “No, you pay at the front,” she said, and tried to hand it back. I ended up shaking and crying on the floor. Not a single person asked if I was alright.

 

Eventually I made it across the road, to Historically Really Nice To Me Pharmacy. The assistant there took my note and brought back the pharmacist, rinse, repeat. The best she could do was a 12-pack, and she would note on the system that she had recommended I see a doctor. I had to turn off my music and type to her on my phone, because she was “can you write? is there someone to speak for you? i can’t understand you”, and so the ambient noise was prickling at my spine, sending spider-spikes up into my brain. My mp3 player died over the weekend, because when you’re dissociated and have a migraine and are in so much pain that you pass out rather than feel it, you do stupid shit like put your mp3 player in the washing machine.

Eventually, even though I did my best to explain that my doctor assumes that as an adult I’m actually capable of managing my own medication (and indeed, if not for being sent home from hospital after surgery without safe pain medication, and having to deal with my body rapidly changing, therefore causing more pain… I would still be at the one packet  a week I was before, rather than the 3 I am now, which is actually an improvement on what it was), and they don’t prescribe it anyway as it’s an opioid and, therefore, addictive (even when a specialist tells them to, actually – I have tried, trust me, because it would be so much easier to have people believe I take it for pain if it was prescribed, and prescriptions require less talking). “They will prescribe it to you,” she said. “Or a letter. A letter is fine.” Because if I took in a letter, they would totally believe I didn’t write it myself.

But she was also on about “you had some last week, that shouldn’t have run out yet”. Let’s do the math, though – 6 tablets a day x 5 days = 30 tablets. Wednesday to Tuesday is 6 days. I have had pharmacists advise me to take it for 3 days, take a day off, then take it for 3 days. In no way, therefore, is 6 days “too soon” – it’s right on the “will need to start new one tomorrow” line. And I snapped

‘what record? i no consent record’ i typed.

“The pharmacists should have explained to you that it’s recorded on a nationwide system,” she said. “Didn’t they do that?”

No, no they did not. Until today, I have had no confirmation from any pharmacist that the database is actually a thing, that they’re recording my activities and sharing it.

“Every time you show ID, we record it on the system. It’s anonymised, so we only do it from your license number.”

‘I no consent. Plese delete.’ I typed

But she couldn’t delete my record. She could only delete that day, from that pharmacy. I’m not allowed to access my record, either, even though it’s mine, because anonymising it means I can’t prove it’s mine. Or something. And, of course, if she deleted it, she wouldn’t even give me the 12-pack.

 

I took my ID back and went to class. I sat down in the waiting room, and even though I was wearing makeup, I really did cry. I vented to my mum and on Facebook, because this is wrong. I have a medical team and the right to make my own decisions based on their advice. A pharmacist shouldn’t be able to make judgments based on only a computer, nor on their limited grasp of the facts. No matter what anyone says, I am not an addict, the same way needing heart medication doesn’t mean my dad is an addict, or needing insulin doesn’t make a diabetic an addict. If I wasn’t in pain that routinely affects my ability to function, through making it far too painful to stand, to making my head feel like I’m wearing a bubble with crushing air pressure, to being unable to urinate, to not even being able to knit or type, to not be able to stand or bend or sit then I wouldn’t need pain medication. Except I am, and I do. Funny thing, knee pain – they just decided surgery doesn’t work, and they recommend pain medication as needed. …

 

So Friday will be interesting.

 

So then I get to class, and I explain that my mouth hasn’t been working properly and I bit a hole in my lip instead of my food.

“You know, you say you have trouble and all that, but you’re fine in here.”

Because, you know, half an hour before, I take my meds, I meditate, and the rest of the week I spend resting because all my energy has to go into being in there, and not being harassed. It’s always something – my clothes, my hair (I always wear it up now, because the receptionist cornered me in the classroom and said she wanted to get me drunk so she could play with it. I doubt having a bun helps when I say I have a migraine, but having a braid on my spine is worse) my shoes, my makeup. If I don’t have a panic attack beforehand, I’m dissociated, or I’m so stressed that I go into survival mode, and my brain thinks I still have to pass, and then coming down from that is like subdrop amplified.

“Why weren’t you at the show on Sunday?”

Because Wednesday was terrible. Because I went out on Saturday to take photos of the knitting exhibit at the Show and a volunteer there prevented me leaving until she could tell me off for having an ankle brace. Because my mp3 player was dead and my phone is not the best substitute. Because it was at the venue where I once reserved a table and they gave it to someone else, and the tables are behind the standing area, so I wasn’t able to see the show. Because I was asked to be in the show and then not allowed to be in it because “it’s too hard for you with your condition”. Because I had to choose between being there and being here. Because asking me to get somewhere at 11am on a Sunday means I ahve to skip an entire night of sleep, and I still haven’t adjusted back from the psych-eval-that-wasn’t.

 

I’m starting to suspect, if I could just be left alone for a while, no doctors, no class, that things would be much better. As it is, though, there are so many people with their idea of what ‘recovery’ and ‘functioning’ look like, ideas which differ so radically, that I don’t have room to actually plot a path that satisfies everyone, is within my ability and finances, and doesn’t come with the very awkward squarely-on-a-trigger concept of ‘if you do not meet our standards you do not get paid’, because that’s how disability and workers comp work. As it is, there’s so much pressure, so many external standards, that there’s no flexibility. I can’t go get meds and have three packs so that I can stay home for a week and actually rest, so I have to actively alter my sleep cycle, which means more pain (seriously, this is a thing), just so I can get meds for the pain so that I can go to the psychiatrist and get yelled at for whatever thing I haven’t done right/enough “but [he] find[s] that people know what they need”. I don’t need to talk. I don’t need email. I need a job that lets me work flexibly from home at night for a few hours a week, which doesn’t exist. I need to have a decision on DSP. I don’t need to be harassed about my medication or be sent to allergy testing for being vegan. I need to not have to be on Facebook every day and to not be harassed if I am not online ‘enough’, whatever that means. Human beans can survive without internet, without phones. I don’t know why everyone else didn’t learn to fingerspell in kindergarten, but not being called stupid for not talking would help, as would not assuming I can’t hear being called stupid because I can’t talk. Touching isn’t necessary either; it should be optional by default.

 

On the plus side, I received a very apologetic email from the ABS last week, with the correct census link, and a promise that I won’t be fined (which, well, it’s still within the window to fill it out, but now I have it in writing, in case that man comes back and tries, I spose). So now I exist again, as a genderfluid disabled person who identifies as Irish Catholic, speaks Greek at home (which is actually true, not trolling, except for the part where I suppose speaking implies actually talking…), does not work due to long-term disability, and needs assistance. All that for a five minute questionnaire, which would probably have been more functional on SurveyMonkey.

And my new mp3 player arrived today. I don’t have money to buy food with, because to get one with buttons rather than that wheel thing which is impossible for me to use because, you know, it requires seeing and fine motor control and stuff like that (I did actually have the use of an early iPod, so I know this), cost an entire fortnight’s ‘allowance’. It’s a necessity, because ambient noise and sound and anxiety, but I don’t know when I’ll buy groceries again. Or, like, anything else, apparently. Did you know that the price of OTC meds varies depending on how far you are from the CBD? The 12-pack today cost the same as the 30-pack yesterday. How stupid is that? I wonder, if by some miracle, I do manage a prescription, whether it would come down.

 

(For the record, if you put Sennheiser CX300-II headphones through the washing machine, they will still work. I already adore Sennheiser and all, but that is amazing to me.)

 

Ranging Ragemonster who Rages

aka Disability, woo! pt n

 

When you can’t talk, and you’re angry, you can’t just go yell at people. Otherwise, I wouldn’t be typing this right now; I’d be waiting in a line at Centrelink with the whole thing blowing up until it came out at a person.

Sometimes, when I’m pissed, it comes out physically, like how I wanted to smash the overlocker the other day and ended up smashing the door frame and a few other things instead.

 

And sometimes, I snap. It’s the rare time that my brain works the way it did before, when not talking was a sometimes thing (seriously, the doctors are still pretending that it’s a sudden thing, because it makes them feel like they can fix it, but it’s been happening since I was at least, you know, eight, so they’re just dreaming) and all the information went in and twisted around and came back out in order and clear and connected, all the things that made law perfect for me even though it was everyone else who wanted me to do it and not, you know, me. I’m perfectly calm. Things look like a flowchart, a series of if… then… statements that connect and swirl, and I feel in control.

This makes me dangerous. People don’t like me when I’m dangerous.

 

So, as you know, about a week and a half ago I received a letter with an address and a time, and it came with the usual ‘this is a notice under social security law, if you do not attend your entitlement to benefits may be affected’ note which fails to actually cite an actual law to back it up (because most of the staff don’t actually know; it’s largely handled in regulations and policies and not all of it is public-facing). It was scheduled in the morning, telling me several things:

  • whoever made the appointment either failed to notice, didn’t care, or was not informed that I specifically requested afternoon appointments because of multiple diagnosed medical conditions which affect my sleep patterns;
  • having multiple diagnosed medical conditions which affect my sleep patterns is therefore not an ‘acceptable reason’ for rescheduling;
  • they are not interested in having me able to participate in the appointment because obviously, attending means I will be exhausted.

I also gathered, from the short notice, that they do not understand that it isn’t easy to arrange a support person (someone who may have to travel, take time off work (and would therefore need a medical certificate… even the people who are professional support people, like lawyers or advocates, generally need more than a week’s notice, which of course I know from personal experience). That is also not an acceptable reason to reschedule, even though at the last appointment I was yelled at for not having one for about twenty minutes. I know this because I actually tried to get one rescheduled, a while ago, and was told that it was not good enough as there was enough notice. (what is it with people assuming that no paid work = free time central? I did actually have to cancel things to attend today).

 

So, because I was tired, and my brain feels bigger than my head and light makes it have stabby pulsing pains, and my stomach is so tender and my back is shocky just from one layer of clothes (let alone the four for outside clothes), and because there was a tiny incident on the way there… I got lost. So I know I was in the right place, because not only did I get directions off Google Maps before I left, I was following the street directory. There was a psychologists’ office there, even. But, apparently, not the one I was meant to be at. They weren’t expecting anyone who signed. “Is someone coming to talk for you?” they said. Then ran down all the names of the psychologists there, none of them matched the letter. One of them ran to the one next door, who were also not expecting anyone. The address was on the window.

 

… I ended up going across the road, getting my meds (they didn’t ask for ID! I am hoping that entire thing was scrapped because it did not work, but honestly, it’s probably because I really do look that terrible today), and coming home.

 

If I could talk, I would have gone down to the office and made a scene. But last time I was there, they wouldn’t let me type, so that was pointless.

 

Instead I came home. I have ice on my ankle – I sprained it a few weeks ago, and it doesn’t like that I’ve gone from going out once a week to every second day (last week it was every day). I am deciding what to say.

 

Now it is time for the if… then… part

If they decide that missing this appointment, which they made for me with no respect to my stated needs regarding time, and apparently sent me to the wrong place for, means they reject my claim, then I can appeal. I made a good faith effort to attend and I have done everything else they asked. And as I said, before, tribunals are my territory.

If they schedule another appointment, and send me a letter in which they yell at me for not attending, then I will cry for the entire short notice period, and I will go walk around until I find the right office, and reschedule it for a time that doesn’t require me to skip a night’s sleep, and if they deem that not reasonable, then, well, I did try. And if I miss it, or you know, pass out and sleep through it, then they had notice, again, of my condition.

If I write a letter and send it to them, because I’m not making it to the office now on my ankle and with my head how it is, then they know that I tried and to double check their mail merge to make sure the address is correct. And, they have a record that I tried, so if they reject my claim, then it looks pretty stupid.

 

At least, I hope.

 

But I know IMEs are frustrating. I know this from both sides. Why not make it easy by, you know, including a map? Or, like, the phone number of the actual office and not the central cube monkey interstate phone number? I could have sent a message to the office that way, or had my mum ring for me (and put up with the consequences). Talking people could have just rung up and been like ‘yeah I’m at the lights on this street help where are you?’ which I know people do because I’ve been the one giving directions.

 

And, naturally, I have things to do now so I can’t go to sleep. If I do not make my regularly scheduled fandom post, I will get emails asking me whether I’m dead. I would dearly like a break, but that literally happened to the person I took over from, who was meant to be gone for a few weeks (it’s been six months). My boys need me tonight, although I’m not allowed to have a favourite player any more because if they get injured I end up with the same injury and it’s happened too many times now for it to be coincidence, though I don’t really know why.

 

So yeah, that happened. The reason I’m calm? I’m about to crash, massively. The simplest summary for my triggers is ‘being yelled at and my money/house threatened for things that are not my fault’. This hits that. And when I crash, it will be a mess.

 

That isn’t an if… then… at all.