I wish…

TW: medical procedures, pharmacists, dysphoria, anxiety, disordered eating

 

I wish I could say I’m so angry right now. I want to be. Unfortunately, my anxiety has been so high I’ve basically gone back to how I was before I started getting things under control. Basically, one of the things I have learned is that when stress and anxiety build up and last a long time, my brain resets to how it was before I got out, got into treatment, and started working back to normal. It’s almost as if my brain learned how to function in extreme stress and forgot how to work normally. With the higher general level of anxiety from the Mirena, and so much drama to deal with between my disability claim, trying to get the Mirena out, and dealing with people, I can see the old things sneaking back in. Comfort food, pre-made packaged food… of course, everyone thinks things are great because “you can talk today!”. Well, no, that’s not how it works; sure, sometimes in that kind of stress, my brain makes words come out, but I don’t know what they are or if they make sense, I still can’t understand what people are saying, and basically it’s my brain going “oh things are normal now cool!” when really, it’s not normal at all.

 

Today, the Mirena came out. I saw it, a little ivory thing that looked like a crucifix until the doctor threw it in the bin. I have my Implanon back, although that’s misleading – it’s a shiny new one, specially ordered for me from my favourite pharmacy, carefully inserted in the correct position. I sent everyone a photo of my bandaged arm, with the caption ‘YAY!’. It’s not quite like my first one, when I had a bruise the length of my upper arm. I was working at a Catholic school at the time, and the way some people looked at me was hilarious.

“It’s an implant that releases medication for my migraines,” I said, which was entirely true, though not the entire truth.

 

Since the Mirena went in (and yes, I saw it go, so it must have been put in there), my breasts have grown. I don’t fit in my corsets any more, so my back is constantly sore, because I can’t lace enough to have back support. I knew I had an infection before I had the symptoms down there, because my piercings smelled and some of them had discharge. That, I was able to get medication for. Naturally, that was easy.

On Tuesday I sat down with a bowl of pasta and a movie – my reward for going to speech therapy. As usual, I rested the bowl on my lap and against my tummy. That hurt. Apparently, also because of the Mirena, that area is swollen and tender, much more than it was before (and which the Mirena was meant to fix, except there wasn’t actually any endometriosis, according to the gynaecologist). I have no idea how long that will take to go away. It’s really, actually, only because it came back that I noticed how much it had all gone, much in the same way that not having periods for four years made the concept of bleeding there so much worse. You adjust to these things, happy about them at the same time as you don’t really notice them, and then they’re taken from you and part of your identity is gone. I mean, sure, it’s entirely possible that not ovulating because of the Implanon had nothing to do with the way my body changed, and that it was entirely because, you know, I stopped eating, picked up dance again, but I doubt it’s a coincidence that it all came back so quickly exactly from the day the Mirena went in. The one thing that is exclusively related to the Implanon, the magical freedom from acne, is very clearly back. I have holes in my cheeks and back that are a centimetre wide, and not even because scratching is a thing I do and being stressed means I do it a lot, but because you can’t not bump your face or back when you put clothes on.

 

So the Mirena, doer of evil, is gone. Because it was even there, the joy that it is gone is a thing I must fake, because if I do things that show how I should be feeling, perhaps I will feel it too. I had comfort food, after – a small serve of chips from one of three places where the chips don’t make me throw up and my throat swell. Really, it was because I was in no state to drive home. I didn’t expect that, because both times I’ve had an Implanon insterted before, even the time with the bruising, I was able to drive home immediately, irrespective of anaesthetic or pain (because let’s face it, I like pain, and this is blatantly obvious in real life). When it was taken out, my arm went numb for days, because the local anaesthetic interacted with the general anaesthetic, and certain people (let’s call them nurses, because people who work at hospitals aren’t supposed to say things like this in case it becomes circumstantial evidence in a legal action) verbally expressed confusion at why a local anaesthetic was necessary for someone under a general. (The anaesthetic isn’t for the pain, because the pain is nothing. Having your septum pierced is worse, trust me. The anaesthetic is for the muscles, because the Implanon sits deep enough that a reflex action during insertion can affect the Implanon’s placement and therefore its effectiveness. And, I suppose, it helps if you don’t like pain.)

 

You remember how I talked about the new system the Pharmacist’s Guild sneaked in? Well, today the doctor was running late. She knew I was anxious, because it was obvious to everyone; the receptionist didn’t make me wait in line to be checked in, and nobody sat near the weird shaking person wearing a mens rugby top and a skirt. She apologised when she called in the person before me, half an hour after I was meant to go in, and then again when it was my turn. She was going to leave the Mirena in, last week, but today she just said it was coming out. I had taken in a letter saying that I was afraid of keeping it in, and how much longer it would take to wear off, and I probably rambled about different hormone mechanisms and side effects. She talked through everything, gave me safe signals to use and did not say a word about the teddy bear being squished in my hand. She talked me through everything, miraculously got the speculum right the first time instead of the normal this-is-too-short-you-have-such-a-long-vagina-it-looks-so-nice routine that would send me into either tears or a dissociative episode. It was all done, and she said I could go. I didn’t even have to pay, because my shiny new concession card meant that it would be taken care of by the endangered species known as Medicare.

 

Except she was running late. I’d passed out about 8am, and woke up with just enough time to get dressed and go, as if someone was watching the clock and maximised sleep and preparation time. One dose of my meds lasts between 2-4 hours, and I should have been home right on the 4 hour mark.

Except she was running late. Instead of being home, I was walking out of her office, a little disoriented, a bit fuzzy, barely holding on because makeup means no crying and there are people so no crying. It was rush hour, too, so there was no way I was actually getting home in the same twenty minutes it took to get there. So, after dodging roadworks and finding a park, I went to a pharmacy near a safe takeaway place and a supermarket, about half an hour (therefore a two-part drive for me) away from my house.

I walked in and was met at the door. It was so quiet I wondered if they’d closed already, but reminded myself of the time; it was fine. I went to the back counter and handed over my note. It was fine… it was fine… the pharmacist took my ID and disappeared behind a counter. While she was there she was talking to another customer – they needed extra medication to take with them on a trip, and the pharmacist was discussing with them how much they would need and how best to sort out the prescription to accommodate it. Then she went back, got the box, and came back to me.

“How often do you get migraines?” she said. I signed to her and she pushed a pen and a face down empty script at me. My shaky hands weren’t very good, but I got my phone and typed to her. I explained that they were hormonal, I had just changed birth control, and we hoped to have them back under control soon.

“If you have them a lot you should see a doctor,” she said. I typed that I had just literally come from the doctor.

“Well, you should get a prescription, then. You can call your doctor for one.” For an OTC painkiller, which, you know, is over the counter. If it was prescribed, it would cost the PBS rate, and therefore be more expensive, and all the other reasons they don’t prescribe it, like trusting me to manage it myself since I don’t have another option. I took the easy route, and typed that I couldn’t talk to call the doctor.

“I can call for you,” she said. “I can call a doctor to come to your house, if you’re in that much pain.”

Wait… what?  She had written out all the dates that medication had been given to me before, and shoved it in my face. “You had a 30-pack on Tuesday.”

Well, yeah, actually, um, I put that away as an emergency pack. It is a thing I learned from my parents with money, but it works with medication too – I keep an emergency pack hidden away, so if I run out on a bad day, I don’t have to drag myself out and drive somewhere when I can’t see to drive. Instead, I just typed to her that I didn’t want to run out over the weekend. You know, since I just had a minor operation and I’m meant to be resting, and if I keep going out every day I’ll never save enough spoons to do the dishes.

“We’re open every day,” she said. “If you’re in that much pain that you need more, you have to see a doctor.”

Like the one I just came from? I typed. The one who is monitoring me?

“You have to have a prescription.”

I typed “Will you give it to me today or not?”

She said no, and I walked out.

 

I went across the road, to the one I went to the other week, where they took my ID and kept it behind the counter while they waited for the pharmacist to get back from lunch. Today, she looked at me, didn’t ask for ID, and told me to take two with food.

I walked out, sat down on a bench, and took two. Without food, because I couldn’t wait that long.

 

But if it was that obvious that I was in pain from looking at me, why just get on the prescription (for a non-prescription medication) roundabout? It’s like giving someone a prescription for cold and flu medication, or ice. I mean, sure, the pharmacist can’t know I’ve tried everything, but to get on the roundabout and keep me there, when she had no intention of actually providing the medication, and to send someone to my house? I don’t know if I’ve mentioned this before, but nobody is allowed in my house. It wasn’t always that way, but now my house is the one place that is mine, and is safe(ish). That’s just rude, really. And to be like ‘welp, come back in a few days?’ Because resting when you’re in pain rather than making it worse by traipsing everywhere is not a thing, apparently. That makes me weird, maybe? I’ve had pharmacists put barriers up before, but it’s always been enough to say ‘yeah, I’m waiting on a referral’ or ‘we just tried this, but in the meantime I need to stay with what is working’. I’ve even gone the ‘look, my psychiatrist wants me to stay on it and is monitoring me’. But it was just like nothing was good enough for this one, and of course, she has my name and address and can pass as me to various government entities. (Did you vote? I did a postal vote. I was asked to work at the election but apparently my offer was a mistake, because it was for a role that required making announcements and I asked about their accommodations and that’s what they told me.)

And, if it was that serious a thing, then wouldn’t every pharmacy do it? And for that matter, wouldn’t they actually, you know, inform people about what they’re doing with this information? I only know because I dug around online, and then, of course, today. If it was that important that I didn’t get the medication which I required to, you know, drive home (the hypothetical doctor hasn’t shown up, by the way), then how could I literally stumble across the road and get it? I mean, okay, sure, sometimes I fudge it by picking a nice pharmacist, and more often than not I keep my sunglasses on inside (because light is bright, don’t you know), and half the time I’m making sure I don’t run out on the occasions I decide not to leave the house for a few days, but still. I’m even more confused by the whole thing. I would probably be less confused if it was one of those instances where I was not in desperate dire need of it – today? No way. I have a hole in my arm which is bleeding, I had an evil mind-controlling device removed from its temporary refuge in an organ which isn’t mine but lives in my body (meaning that the pain there is on its way to spiking and nothing I have access to will stop it), and I had a lovely film over my eyes making everything blurry as if looking through a very oily bubble. Oh, and I’ve had a chest cold for going on two months AND I have a yeast infection AND an infected mosquito bite and a bunch of open acne sores and… my brain doesn’t work right when everything’s normal.

 

Compounding this – when I found out about this, I did my best to let people know, because I can see certain sequences of events occurring. For example, someone goes in to a pharmacy to get cold and flu medication and a certificate to get a day off work because they, you know, have a demonic cold from hell that stuffs with their brain and makes them feel like they’re cotton wool wading through fairy floss. They don’t bring their ID, because they get their kids’ asthma puffer from there and the staff know them. They get neither, because they have no ID, and when they get home they pass out and don’t get to go back, so their partner has to bring something home with them. Then because they missed a day of work without proper documentation, they get fired, because it’s their third warning or they’re already on a PIP.

As a result, I have a bunch of people telling me “it’s because they care for your health!” and “try not to be offended, it’s so they can make sure it won’t kill you”. You know, all the bits that are taken care of by the standard “do you have any stomach issues? are you on any other medication? do you have asthma? take no more than six a day” conversation. If it’s a place they remember me (which, I’m distinctive, so it happens, what with my gender presentation and the fact that I don’t talk and my note eventually gets doggy eared), occasionally they check “you are seeing a doctor? you’re taking a lot, you know it’s not the best medication for migraines”, at which point I get to explain exactly what I’ve tried and what the consequences of each are, and they kind of get scared and give it to me to make me go away. This tends to happen a lot more with older male pharmacists, so I assume this is at least partly personal, because 80% of the time with female pharmacists, I put my hand over my tummy and they go ‘oh’ and hand it over, either offering me water and a place to sit, or wishing me luck. (I haven’t come across any obviously non-binary or otherwise. That would be probably the most amazing thing ever, to find one who would just get why I don’t want ovarian pain, ever.) None of this makes sharing my personal data without asking me necessary for my health. I don’t understand, honestly, why anyone thinks that’s okay, nor do I understand how a policy that actively targets people who are more likely to be functioning with diminished capacity is allowed to continue. (We have an election tomorrow. Guess what isn’t an issue? This policy. The entire healthcare system is in jeopardy, anyway, but still. If I could pay $5 to see a doctor who would give me a script for something else that would work and wouldn’t make it so I couldn’t see or move, that would probably be better than this. My postal vote looks like chicken scratches and probably won’t count, though.)

 

But what do I know? I’ve also, in my quest to practice communicating with people, been yelled at for feeling uncomfortable with a video game storyline where someone actively sexually harasses a junior employee in a workplace, in a game which also has the main characters ‘face themselves’ by showing them alternate personalities which are afraid of people perceiving them as sexual-based cliches (e.g. one character is afraid people will think he isn’t manly or heterosexual because he likes to sew, and compensates by projecting a biker image, another character is afraid of being viewed as a sexual object and her alternate is a stripper…). Apparently these aren’t sexual at all, and I’m just misunderstanding, which if anyone would explain what I’m not understanding rather than call me names and then go “I’m just trying to help you!” when I point out that they’re not helping by calling me names, maybe I would get. (The game is also, I suspect, aimed at teenage boys, who would, naturally, have a rather different perspective and likely not view these things as having a sexuality-based or gender-based aspect, and I admit to abbreviating my thoughts rather than come across as an SJW, though I did disclaim that being ace I may not be correctly understanding. I suspect the name callers are either teenage boys or played the game as teenage boys, and take someone not being a rabid fan as a personal affront. You know, patriarchy and rape culture. Except, somehow, this is the one forum in all existence where the default assumption is that I’m male. I kind of enjoy that.)

 

So I should be angry, but I’m not. I’m not even tired, though physically I’m fatigued. It’s not really depressed, because it’s not that I can’t feel anything, because I’m aware of highs and lows, however muted they are, and it’s not the kind that passes the “I felt nothing would be okay again” checklist. It’s just that my brain has had enough, and this is what happens when my brain has had enough. It shuts down, sending the stress and anxiety and the emotions through other parts of my brain, so that every word has to be retyped until it looks like it’s not misspelled, I don’t even remember that I’m meant to talk when people ask me stuff, my bad knee – the one that’s had period pain for the last two and a half months – buckles and won’t hold me up, so I end up collapsing and have to crawl around. If I eat, it hurts and then I throw it back up, because that’s just how that works. If I sleep, the nightmares come, and I don’t rest enough for it to fix itself (hence the meant-to-be-mindless video games, because TV and gaming often uses less brain than sleeping does). I’ve been functioning through this stress, where even that is a trigger, because having to function through that sets off a flashback and it cycles around, and my brain is tired of all the extra work to get much much less done.

Except, you know, I have a migraine, and all this pain, and my brain has had enough, but the pharmacy is open every day, so I can just go get meds whenever, right? I would bang my head against something, but at least part of this migraine is a concussion from doing just that, which is how I know the Mirena anxiety is not normal.

If anything, I’m just exhausted, ready for the fog to come back down and everything to go back to being carefully, precariously balanced.

(I feel like taking a note, next time, that says “If I was a drug addict, I wouldn’t be dragging myself here to ask for painkillers that are legal over the counter medication. First, I would take all the Endone that I’ve been prescribed and haven’t touched because I’m allergic to an inactive ingredient, then I would call my ex-boyfriend whom I dumped because he wanted to put me on ecstasy and move me into a cage in his bedroom, and I would offer to trade him sex for drugs that actually work. He would say yes, and I would be too out of it to care what he did, and then you’d see me back here as a both an addict and a domestic violence victim. I would really prefer to avoid that outcome by taking this medication which only barely makes the pain so I only notice it most of the time instead of all the time, and which is the only thing I have access to which doesn’t make thing worse. I can promise you my use is being monitored by two medical professionals and that if I had a choice I would not take it, however if I do not take it I will be in so much pain I will not be able to function. Please note that exposure to high levels of pain over time actually affects the way the brain interprets pain signals and it is generally considered better to dull pain rather than encourage an outcome where pain sensitivity is increased. I have experienced this pain for thirteen years now, and chronic pain is usually diagnosed at 6 months.”
I don’t think it would actually work, but it would probably be amusing to me, if my brain was up to that at some point. Not today. I don’t even know if this entry makes sense or has a point.)

 

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