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.

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Courtesy is dead

This just in: an update to the workmen situation from Monday.

 

So yesterday, I missed my doctor’s appointment to sit at home all day because the neighbour told my mum that they needed to get into the back yard. I need to physically open the gate, which only opens from the inside, and because it shuts on it’s own, I need to do it to let them in, because sensible people generally don’t leave their back gate open for anyone to wander in, especially in an area with kids and bikies (probably the nice ones) and serial breakins in the area.

Nobody came to get me to open the gate. My mum called the neighbour (she does this without consulting me a lot, and then complains that he’s hard to deal with) and he said a time. Nobody came, again, and I explained to my mum, again, that I need to physically open the gate for them.

I saw them leave and nobody told my mum anything, nor did my mum get through to the property manager to confirm anything. We thought they were done, and were generally relieved.

Continue reading Courtesy is dead

Lack of Lived Experience

TW: medical stuff, ableism, lack of understanding from medical professionals

 

In this post I am going to list things and what people say and try to explain why it’s totally inadequate and ill-informed that they said it. It’s a processing post, because I can’t separate the hurt from anything rational because this all feels so totally irrational to me.

 

You don’t have many pimples anyway, you can just use pimple cream!

People don’t only get pimples on their face. Pimples on the face can be covered with makeup. Judging acne only from what’s on the fact is therefore flawed. I have pimples down my torso to my waist. Some of them form deeply and last for months.

Pimple creams are acidic and generally carry warnings about not coming into contact with clothes. For pimples generally in areas where there are clothes, pimple cream is not an option if one can’t afford new clothes.

The fact that I have pimples again distresses me because it is a symptom of my body not being the way it is in my head – there are not-mine hormones and not-mine shapes. It isn’t compassionate to say ‘but they’ll go away with time’ because that is measured in years, if at all. It isn’t compassionate to say ‘but pimple cream!’ because that expects me to spend money I don’t have and incorporate a daily/twice-daily thing that is focused specifically on this symptom I should not have. Making it a bigger part of life doesn’t make it less distressing.

 

You can have a Mirena! We’ll just knock you out for it.

I said NO to the Mirena. I am here because I had one forced on me and it has screwed up my body and now it’s not mine. Being unconscious for insertion doesn’t change the fact that once one wakes up, it is in there and has a constant presence and greatly unwanted side effects. Being unconscious for a procedure doesn’t take away the before and after. It doesn’t take away the knowledge that strangers are poking in body parts that one pretends aren’t there. You don’t get to be unconscious for the time when you’re preparing for it.

And, since I was very clear about my history and what I wanted and why, suggesting it at all implies that the doctor isn’t paying attention.

 

But it will go away with time, you just have to wait.

Wait how long? With debilitating anxiety? Exactly? Can you put an end date on this? And what am I meant to do in the meantime? See how I’m explaining how this impacts me? And you expect me to live like this because it might go away later?

 

But you haven’t had a period, that’s great!

Yes, I know it works. That’s why I didn’t want it changed in the first place. But it was. And because you’re refusing me a permanent solution, I have to put up with you suggesting constant non-permanent solutions, which do not work for me and you follow up with but I can’t have them yet because I’m too young (what the hell) and you won’t let me type to you. I have to put up with all of the above.

I also have to put up with a permanent migraine and a bunch of side effects which you’re totally minimising. But, you know, sure. Not being able to see and being constantly terrified is great and I can’t think of a reason to justify that even to be sarcastic. But go ahead. Sure.

 

 

We can’t be sure why you want this.

Well, refer me to someone so you can get a report that says so, since you’re quite happily ignoring the one (two) you already have. Also, you’re the one who decided that it was the only way to get it done and hasn’t bothered listening to the whole ‘I am in a lot of pain’ part. And perhaps if you even let me communicate with you, yeah, that would help.

 

I Can’t Even

TW: gender dysphoria, anxiety, ableism, discrimination, mentions of rape/pregnancy, discussion of reproductive organ stuff

 

I just got home from the gynaecologist. I didn’t make it home before spouting into big ugly tears. I didn’t even make it out of the office, though I fought valiantly to keep them just in my eyes.

 

Let’s recap the situation:

I am genderfluid (they/them), asexual, and very not interested in having children. I very dearly above pretty much everything else in life, including singing with Sir Russell and not having to ever talk to my mother again, want a hysterectomy-oophorectomy.

Continue reading I Can’t Even

Hot Girl Privilege

TW: ableism, discrimination, discussion of medication and being triggered

 

This is what my pain medication situation looks like right now:

January: Pain specialist does a superficial examination (which triggers me) and says he’ll give my psychiatrist a script to give to me, and will see me again after that so he can see how I’m going with it.

Yesterday: Psychiatrist refused to give me a prescription because he didn’t think it was appropriate, so I have to wait a month to see the pain specialist again for another examination.

 

I decided to experiment. Since I’m stuck with my current medication for another month and instead of ‘try not to take it’ I was told ‘do not change anything’, and I had run out in anticipation of having a prescription, I needed to get some more.

This is what happened last time I went to the late night chemist.

Today it was later, I was presenting feminine (because lazy-default is a maxi dress, corset and jacket with heels and my hair in a single or double braid), and the assistant was masculine-presenting.

I had no trouble.

This could also be attributed to the fact that my eyes look like my makeup ran to panda eyes and my right leg buckles every time I put weight on it, like, when, you know, walking.

But the people before me was getting different brand same thing, and I caught the tail end of the lecture, and they had to disclose their appointment schedule, treatment plan, and symptoms.

I just had to go ‘no’ to the ‘are you on any other medication? do you have stomach trouble?’ routine.

I wonder, I really do. Last time I was presenting more andro, and there were female-presenting staff. The pharmacy where I go every Friday and if I get my days mixed up and run out? Is run by a man. He only asks to make sure he gives me the right brand.

How much of my luck so far has been because I’m apparently quite attractive when I present female? Is it as much as the ‘female under 30 must have psychosomatic pain’ preconception?

 

I don’t know. I don’t know how to test for this. It just happens too often to be entirely disregarded.

 

 

A disadvantage of this, however, is that apparently specialists won’t be alone in a room with me. The pain specialist, despite me saying no, I did not want this, brought in one of the admin people to stand in a place i couldn’t see while he made me bend and told me to take off my shoes “so I could balance better” (nvm that i fall over without them). It is worth noting, too, that the psychiatrist specifically asked me if this was okay to put in the referral and I specifically said no and stated that it was traumatising for me.

The psychiatrist asked me how the appointment went, and I stated this and that it was against my wishes. The fact that he deliberately ignored me telling him I did not want a chaperone, and that the psychiatrist specifically included ‘do not have a chaperone’ in the referral is suddenly forgotten, and the fact that I’ve been having nightmares for the last three weeks directly because of this is totally dismissed. If I do not go back to this pain specialist, I do not get better meds, and I don’t get another referral. Apparently this is because the last specialist I went to was a bitch who pulled my hair and also refused to respect me saying ‘no’ to her dislocating my shoulder because she decided I needed help to move around, and the psychiatrist thinks she’s a nice person so therefore I must be making it up, so I now have to have someone watch me go through this so that I can’t make more things up.  (This is what he said. I was pissed.)

(Who on earth thinks having a random stranger come and supervise while a doctor makes you run through positions and pushes you around isn’t humiliating and capable of being a trigger for someone? I don’t get it. My plan is, if he tries again, to walk out. The thought of it getting to that point? Well, the nightmares aren’t going to stop, are they? And I thought I wasn’t sleeping properly before.)

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.

Tech let me down!

TW: disability discrimination, mention of miscarriage and the trigger warning debate

So I have a story to tell you. It starts with my computer blowing up on New Years Eve, and will end in a few days when my new computer is set up and accessibility-modded. In the middle, we have people treating me like I am stupid (either because of my brain not making words, or because I’m currently unable to pass as anything but female), and we have being banned from Officeworks by virtue of being unable to talk.

 

Yep.

 

 

Continue reading Tech let me down!