#or at least see if my gp will prescribe me the meds i used to be on

[kitchensunflowers]

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[just-some-sad-kiddo]

I can’t remember if I journaled about GI last time, so I’m just gonna recap. The last time I went, we played that sunshine game again and then we did some activities about consent and whatnot. I had a big autism moment where I needed to stand in the corner and dissociate for 20 minutes, but the staff were all really supportive.

I called Kyle and we caught up for a bit. I found this website where you can look up people’s voting registration so we went and looked up our teacher’s and some celebrities. And that’s how I accidentally found Gerard Way’s address. Oopsies. 

I also finally found Mr. Rasmussen’s age, a mystery which we as a class had been trying to solve for years. 

So, there’s an issue with my medication. Basically, the doctor won’t accept our diagnosis because “we dont just hand out drugs to kids here hee hoo!”. Yeah, pretty bitchy thing to say. I know. 

So the GP is gonna send a letter to the NHS asking if he can prescribe us and if he can’t, I basically have to get reevaluated. 

I have less than three weeks worth of meds, so obviously I’m gonna be out by the time that letter even gets written because things take forever here.

I was really excited to have a productive summer. I was really excited.

So I guess I’m gonna going to pop caffeine pills like candy and take every supplement that I can order on Amazon and see what happens. It can’t wont me, right?

I have been having serious joint paint since we moved here and there are so many variables that it’s impossible to know what’s causing it. My back hurts so bad every time I wake up that it takes me minutes to shake it off. Whenever I stand up after sitting down, my ankle (yes, the fucked up one) hurts and I limp for a while. Worth seeing a doctor about? Maybe. At least it’s free. In America, they’d tell me it’s growing pains and then charge us $1000. At least we don’t have to pay for the gaslighting here. 

[icanonlybe-human]

It’s nice to have someone to finally talk to about all of this.

Aunty N is an aged care nurse, this entire side of the family is into health care of some kind. 2 are physios, 2 are nurses. My cousin, while she’s in the infant ICU as a nurse, she has friends who specialise in mental health wards. Doctors can prescribe the meds and talk about how much they studied the brain, but the nurses deal with the real shit. Both Aunty N and my cousin agreed that my GP putting me on 7 tablets a day for my mental health and having a psychologist who is telling me to just keep doing what I’m doing when I’ve been doing that for 8 years and have progressively getting worse… having those two means the part of the mental health system I am using is currently failing me.

They said I need to see a psychiatrist. At least once. And yeah, the waiting lists might be really long but if I make the booking now, at least I can have that appointment to look forward to.

I think I agree with them, and I think I’ve been having those thoughts for a while but wasn’t giving them the thought they deserve because it would mean more money. Aunty N pointed out that all of my impulsive buying recently has probably been from the manic depressive episode. And putting that money towards caring for myself, is probably better in the long run than a pair of glasses.

Aunty N had a palsy episode a couple of years ago, basically a form of a stroke. And for the first time, I heard someone compare spending money on my problems to fix them, as the same as spending money for Aunty N to be able to talk properly and not have nerve pain. It kind of woke me up, that this is a problem with my body that deserves to be fixed by the health care system. Not something to put a temporary Band-Aid on.

I’ve got a doctors appointment on Wednesday and I’m going to demand a referral to a psychiatrist. The last time I mentioned it, with both the GP and the psychologist, I have been basically ignored or questioned why. I’m sick of being sick. And if that means screaming at the GP for him to understand, then so be it.

I deserve to be heard. I deserve to be helped. I deserve to be healed.

[clatterbane]

Among those prescription issues: Even the pregabalin/Lyrica for nerve/phantom limb pain vanished off the last request form, along with the tramadol--when I'm 95% sure they were both previously showing refills available. So yeah, I've been feeling great day to day. 👿

I don't think you're supposed to go off any anticonvulsant (the pregabalin) suddenly either, never mind the tramadol. Though thankfully I haven't noticed any issues besides basically untreated pain for the first time since the surgery. (I have needed to fill in with some OTC co-codamol, which is better than nothing but yeah.)

Not quite there yet, but looks like the pregabalin was doing more than I thought! 🙃

Really hoping that was "just" some kind of glitch. They really are not nearly as goofy about pain meds here. Even if they were? It makes even less sense that the new GP would just suddenly with absolutely no communication decide to yank me off the anticonvulsant for nerve pain with basically no abuse potential, unless you really really like feeling sleepy and stupid. And only a few months after a freaking amputation. ¯\_(ツ)_/¯

There's just enough medical PTSD anxiety there to have helped me put off getting onto eConsult to try and get it straightened out, though. If I don't ask about it, they can't tell me no! 🙄😵

(So now I can also get worried about a reaction along the lines of "See! If you really needed That Poison, you would have been on the phone immediately!!!")

Anyway, another issue was that they for whatever reason decided to prescribe little enough insulin per month that the pharmacist expressed "surely this is wrong!" surprise when Mr. C went in to pick up the last batch.

AFAICT, usually it just gets prescribed in multiples of a full box of 5 pens. And pharmacies prefer not to split boxes. I've been prescribed a whole two (2) pens a month. 🤔

At least at the current dosage requirements, that's been enough of the long-acting Lantus. Though it's always a good idea to have at least one extra (unexpired, perishable) insulin pen on hand, just in case. Sometimes they're faulty, sometimes they break, sometimes you lose them.

The shorter-acting Novorapid to use with food, though? Toward the end of the month, that started running low enough that I had to ration insulin like I was back in the US, and of course also what I was eating. 👿 And I had to try and get the repeat prescription request in as early as I dared.

I would have run completely out of fast-acting insulin the day that the pharmacy did finally get and fill the prescription. Before the whole month was up. ETA: And after about a week of rationing already.

(We hadn't heard from them yet, but Mr. C decided to check there, just in case, before going on an emergency run to raise hell at the GP's office. They had apparently just filled it, and hadn't even had time to bag it up yet.)

Besides that close a call being a Very Bad Thing? Maybe especially dealing with someone who was just recently in the hospital with DKA? (A.k.a. potentially very deadly insulin deficiency. 😩)

Needing to ration the insulin, and restrict food, is just about the last thing I need in my life. Especially with all the ED baggage. I barely escaped a serious relapse, by the skin of my proverbial teeth. And things were already dicey enough for months on end now, with all the ongoing triggers I can't do much about.

(Including "just" skating on the edge of clinically underweight. May well be over it by now. Plus, hello swallowing bullshit making it hard/unpleasant/kinda scary to eat. 🙄 Which damage AFAICT did indeed come straight from the DKA episode, but probably more on that later.)

Plus, you know, diabulimia is also an unfortunately common thing. And I can well imagine that actually needing to ration insulin could be a contributing triggering factor there, especially for someone who already had existing ED issues. Some others are actually mentioned through the link.

So many aspects of just dealing with diabetes day to day seem like they couldn't have been designed better to trigger/exacerbate disordered eating if someone had tried on purpose. And that's besides the fucked up attitudes around T2 in particular, with medical professionals definitely not exempt. 😬

(To make it clear: I really, really DO NOT want to go down any road like that. At all. Even if I hadn't already come within a hair of dying from consequences of badly treated diabetes--and lack of insulin!--just a few months back )

And of course I don't feel like I can say a word about EDs--much less in the context of personal triggers--to any medical professionals. 😑 We finally seem to be at least largely out of All In Your Head Land, and I really DO NOT want to risk getting sent back there.

(Oh yeah, I also need to get both lancets and needles changed to a more appropriate type. Plus more test strips a month, which thankfully we have been able to supplement out of pocket no problem.

They've been prescribing painfully long insulin needles, along with the same awful painful disposable single use lancing devices the hospital was using. Instead of the lancets to go with my meter lancing device?

Only really anticipate any problems with getting enough strips out of them for free, though. Assuming I'm not dealing with a complete butthead like the last couple of GPs. 😵)

I suspect the main problem with most of this is--other than the pain meds--is that they've just been automatically prescribing exactly the same that the hospital pharmacy sent with me when I got kicked out to that nursing home. I did attach a note to the last physical repeat prescription form that got turned into the doctor's, so not sure what's up with that. No changes or communication.

Anyway, apparently I really needed to bundle several vents together, which have been building up for a while! They are kinda connected.

But, here's hoping that this new GP will actually listen to (polite, reasonable, very basic!) concerns and requests regarding my prescriptions. And not be that kind of asshole to deal with right off the bat, before I've even had an appointment! (Because Pandemic Time.) That prospect has got me kind of concerned, though.

[naamahdarling]

Cheap rosacea hacks!

What’s up, fucks?

I’ve got pustular rosacea and it’s the pits! Basically, it’s turbo acne, comes with huge painful cystic acne, and it’s horrible.  It has a disgusting name, it’s disfiguring, it’s painful, it’s just . . . Jesus Christ, I hate it so much.

It’s expensive to treat with prescription meds and despite how painful and embarrassing it is, insurance likes to say that it’s “cosmetic” because it involves “acne.”

Fuck insurance.  Neither rosacea nor acne is “cosmetic.” YOU deserve care.

I want to share with you two CHEAP things that have made a huge difference for me during mild/moderate outbreaks.

I am not saying do what I did.  I am merely telling you what I did, so that you will have this information to do with as you like.  Preferably, you take it to a doctor and they work with you

Metronidazole gel and selenium sulfide can be used to treat pustular rosacea.

Metronidazole gel, usually prescribed as Metrogel, is a prescription-only formulation, so I had to wrangle a scrip for it.

Selenium sulfide is found in dandruff shampoo, and it’s (comparatively) cheap as hell.

A doc prescribed me metronidazole gel for my rosacea the first time I broke out, and it ended the breakout for two years.   When it broke out again, I couldn’t afford it.  Damn.

Thankfully, the vaginal formulation is covered by insurance and according to two of my doctors (GP and my dermatologist), using the vaginal formula on your face won’t hurt you.  (Just uhh just don’t do it the other way around.)  So I did.  And it was effective!

It’s prescribed for BV, and there is usually at least half a tube left after a course, so it’s not impossible to get hold of. Your doc, like mine, might be willing to write you a scrip for the vaginal formula.

It is also possible to get a scrip for the stuff over the phone IF you have both a vagina and a good relationship with a vagina-qualified doctor.

Now, I would never suggest you lie to your doctor when you could just ask outright, hey, give me the metronidazole for the vagina, please. Like, you COULD call and say something like “Hey, I’m having some symptoms and a weird smell so I did one of those test kits and it says I have BV. I’m booked for the rest of this week, but can you call me in a thing and I will make an appointment TODAY to come in on Monday if it doesn’t clear up?” and then cancel the appointment or just not make it. But that would be wrong and abusing your relationship with your provider. Enlisting their help willingly is definitely the morally and legally better way to go.

I hate that I have to say this but if you have trouble getting your doc to see the light, or merely do not at this time have a vagina, please don’t be tempted to enlist a vagina-totin’ friend with an accommodating doctor to do this for you even though they almost certainly would, because that would be both illegal and wrong. Seriously. Very bad, don’t do that. Giving prescriptions to people they weren’t prescribed to is, again, illegal.

The other thing I tried is Selsun Blue dandruff shampoo, the kind with selenium sulfide in it.  There are other kinds, but you need the selenium sulfide kind so check the label.

I read that it had been used for skin conditions like rosacea so I bought some for eight bucks, used it like a face mask (apply, let dry, wash it off), and saw improvement in around a week.

During mild to moderate outbreaks, these two things, metronidazole and Selsun Blue, were AS effective for me as azelaic acid (Finacea) and dapsone (Aczone), both of which were between $60 and $150.  I would stack these up against any topical agent.

Sometimes rosacea won’t respond to anything but antibiotics, I just went through that like a month ago, but this is absolutely a less stressful treatment to your system than a shitton of doxycycline, and it’s easy. So maybe give it a try first, and resort to more expensive and difficult to obtain methods after.

Again, this is not medical advice, this is just information for you to look into and share with your doc. Don’t do bad things with it.

[spidergwenistrans]

I'm sure lots of people have talked about this already, but I think it's really shady the way only parts of transition healthcare are ever covered by so many insurance providers. I'm talking both public and private here.

I want to be very clear about the fact that I'm arguing we add any additional roadblocks or gatekeeping to transition care. All I want to argue for here is that more options be available.

In Ontario, I was able to access HRT through an informed consent process, which means I proved to my doctor that I understood the limitations, side effects, and risks associated with estrodial and cyproterone, the meds I take.

I was lucky, this wasn't my GP's first time with this, so he knew what to do, I didn't have to educate him on the basics of it. He has his limitations, and eventually I want to see an endocrinologist about progesterone, and long term management of my hormones, especially post bottom surgery.

In lots of places, it's way harder to access even HRT. In the UK for example, my understanding is that you need to see a specialist, and GPs are generally unwilling to prescribe HRT even in the interim before seeing a specialist.

As far as I know, the UK is the only publicly funded health care system that covers gamete preservation for trans people, though it's not a part of the system I hear much about. Obviously the UK system has lots of issues, but on paper it sounds like it should be the best one to be trans in.

OHIP (Ontario's system) won't cover HRT for lots (most?) people, because OHIP doesn't really cover medication for anyone from 26-64(?). It does allow your doctor to prescribe you hormones, which was a big win. It also allows bottom and top surgery to be covered, but each has to be approved individually, according to the page listing the requirements.

The fact that top surgery to remove breast tissue has to be approved, but breast reduction is covered automatically, and all you have to say is that it prevents you from living the life you want (essentially, there's a specific wording, but any good surgeon will coach you during a consult, as my friend learned).

I don't want this to read as me thinking we should add gatekeeping to breast reduction, I just want to call out the double standard here.

Meanwhile, all of the trans affirming surgeries require 2 seperate assessments, by 2 health care providers, stating you have a diagnosis of persistent gender dysphoria. They also have that classic requirement: "have completed 12 continuous months of hormone therapy (unless hormones are not recommended) you have lived 12 continuous months in the gender role you identify with (for genital surgery only)."

These are a big improvement, for Ontario at least, over what they used to be. We used to be required to see a psychologist, which meant a 6+ month wait list just to get an initial assessment, followed by probably several appointments, hen being sent back to your GP before finally getting a referral to a (the, at the time) surgeon.

Under current requirements, I could probably see my doctor, and then a nurse practitioner with his office and get my surgery approval submitted in less than a month. Of course, that doesn't mean I'd be seeing a surgeon all that quickly, especially right now.

I'm supposed to talk to my doctor on Tuesday about getting this process started, so that's exciting, if a little terrifying, it feels like the biggest step in my transition so far.

I'm kind of rambling here, the thing I really wanted to talk about was what isn't covered.

There's no support for gamete saving, which kind of amounts to a form of mass coerced sterilisation, since many of us can't afford to save our gametes on our own, especially before we even start transition, and we know the hormones will probably make us infertile as long as we're on them. I know for me, I don't think I could tolerate the 3+ months off hormones required to produce viable gametes again.

I probably could have waited a couple more to start if I'd been trying to save gametes then, but there was no way I could afford it on my own, and I'd be wanting to start them for months at that point, and only waited until I came out to my family. I'm personally not that upset about never having children from my own gametes, it doesn't bother me that much, it's not being able to carry them that hurts more. But my personal feelings about this don't mean that I shouldn't have had the option??

The other thing that isn't covered, which really bothers me, is facial surgery. I know that masculising face surgery is in a very different place than feminising face surgery, but I'm going to speak from the perspective of a trans gal that wants FFS, I can't speak to wanting FMS, trans masc folks who know more than me feel free to comment, or link to other people talking about it. I don't think it's exactly my place to talk about it, and I really just don't know very much anyways.

Bottom surgery being covered is so incredibly important to so many of us, but the idea that bottom surgery should be covered, but face surgery shouldn't is wild to me? Ultimately, they're both somewhat cosmetic, but you know what else is? Brushing your teeth. Bad tooth health will eventually ruin your life, and so will dysphoria, so why can't we cover a surgery that would deal with a major source of dysphoria?

FFS procedures are not especially new or experimental, lots of cis women have some of these procedures as well. From a safety-via-passing perspective, FFS is probably more important than bottom surgery for at least some trans women.

I don't mean to say that we should all have it, or that anyone's priorities are wrong, personally even if both were free, I would still get bottom surgery first. I also don't want to imply that passing should be a goal, requirement, or something everyone, or even anyone should strive for. But, it's sometimes useful to frame things for the cis people that still get to make these decisions about our bodies, to be able to understand why it matters to us when it does.

In an ideal world, trans kids won't be forced to go through the wrong puberty, and hopefully some of these surgeries will be less and less necessary, but I don't think we'll be there for a while, and even if we get there, there will probably always be adults who realise their transness long after puberty.

[terrisha-of-the-abyss]

Ignorance+Arrogance= Worst Doctor I've EVER Met!

WARNING LONG POST/RANT

I had an early morning doctors appointment today, I was seeing a new doc since my regular one was away at the moment and I need some scripts for the Christmas holidays, and trying to get anything during Christmas is a pain in the ass! So yeah new guy, new to the clinic, apparently well liked by everyone who has seen him so far ...

Instant indicator for me that I'm not going to like this guy(I thought he was just going to be one of those falsely nice overly friendly types)

Nope, he's a new age, anti-medication douchebag!

I have never hated a doctor in my life, but i can honestly say that I loathe this bastard with the passion of a thousand dying suns!

Originally went in and did the usual when you meet a new doc, "Oh Hi, I have MS just in for some scripts."

First off he didn't ask about what kind of MS (Balos and Remitting Recurring MS currently) Important be cause he had no fucking idea. Pretty sure her didn't even reat my file.

Second immediately after looking at my medication list said he was not giving me scripts for any of it. Started lecturing me about how I shouldn't be taking any of it, he thought that I shouldn't be on my main medication and to take something that will do the exact opposite of what they are doing currently, he also went on about how he didn't believe in prescribing pain medication*.

The former was of course referring to my immunosuppressive medication Aubagio and wanting to instead give me some Immuno-Boosting "organic" medication instead.

For my MS.

An autoimmune disorder that causes my immune system to attack my brain..

He wanted to make that more active....

And Finally he said my other doctors and specialists didn't know what they were doing, and went on about the power of positive thinking and mind over body.

I have seen the best neurospecialists in my country**, I have had my medical reports sent overseas to some of the best neuro specialists in the world**. My medications that I'm currently on are a result of their combined efforts to keep me alive, and this arrogant, small time general practitioner*** piss stain thought himself more capable, more educated, more brilliant than some of the most brilliant, educated and capable minds in the world!

So I decided to explain exactly what my types of MS are doing and some of what I've been through up to that point. I told him that my balos is an incredibly rare autoimmune disorder that there is less than 70 people world wide who have ever been diagnosed with this condition, I told him about the golf ball sized hole in my brain caused by the balos and that my medication is currently the only thing keeping it from getting bigger and killing me. I told him that I probably wouldn't be alive currently if I wasn't on the medication that I was on and that changing it would very likely kill me.

I didn't tell him about the random jolts of pain caused by the permanent scarring from the balos.

I didn't tell him about how I had to relearn how to use my left arm after having massive seizures around my 18th birthday.

I didn't tell him that i had gone temporarily blind in my right eye for a year.

I shouldn't have to smack him in the face with my binder of medical history! Its literally on my file. If he was too lazy to read it, thats FINE, at least ask fucking questions before trying to over haul my medications and potentially kill me!

If I weren't as informed about my condition, about what I'm taking, if I hadn't done hours of reading and learning about whats going on, I probably would have listened to him, I would have listened because he's a doctor. I probably would have listened to him and changed my meds and I most likely would have DIED!

And that scares me because these bastards are everywhere and there are people who don't know all that much about their ailments or their medication or who don't see specialists, or who don't understand fully what their specialists tell them, they may have been too young or too old to understand fully when they were diagnosed and they listen to these anti-medication, anti-prescription, internet trend following assholes and they Die.

They die needless deaths and I just can't .

I just can't believe people can be so ignorant when you have someones life in your hands.

I can't understand how they can be so arrogant that they disregard years of studies to push their own opinion onto their patients.

I can't find the words to express my sorrow for the people and their families affected by others blind arrogance and selfish ignorance.

**=*= for notes in the post =*=**

*Lyrica and endone for chronic pain from my MS and permanent scarring from a massive brain hemorrhage when I was 18.

** My condition is incredibly rare, most of my doctors were practically salivating over the medical results. Last I checked there was less than 70(68 maybe 65? I think) people worldwide with this condition, that may have changed.

***I mean no offence to General Practition Doctors. I have had some absolutely fantastic GPs in my life, if it weren't for my current and go to GP I probably wouldn't be alive. I was just emphasizing that he was in no way a specialist in any feild particularly the feild of MS.

[kyidyl]

Anxiety/Life update

AKA: Kyidyl pretends Tumblr is Livejournal.

Today was a bad anxiety day. I think it was a confluence of things. I had an appointment with my new gp (primary care doc.) on Monday, brought a print out of my chart from my US dr. that included my adhd and panic disorder/anxiety dx. Found out that they straight up don’t prescribe Xanax in the UK, full stop, so I can’t have a refill on it. She put the idea in my head that I might already be addicted to it, even tho I didn’t think I was before considering her words (I don’t take it every day, and often will go several days in a row without it.) I think she might be right now but I have no idea what it feels like to be addicted to something. I do know that mentally I don’t feel prepared to leave my apartment and accomplish things without it, and I think that’s a sign she could be right. Either way, it’s immaterial because I have like 10 pills left or so and I’m not getting more so addicted or not there’s nothing I can do. She did, however, put me on Zoloft - which is apparently what they use here to treat anxiety (idk what they use in the states other than benzos, because that’s all I’d ever been given.). So it takes a couple weeks to have that build up in my system and I started on Monday so what I’m hoping to do is ramp that up while ramping the Xanax down and hopefully meet somewhere in the middle.

BUT. One of the side effects, and according to the pharmacist - who is, herself, on Zoloft - it’s temporary, is diarrhea. Now, you should skip to the next paragraph if this kinda thing grosses you out. Anyway, having the shits is a huuuuuge trigger for me and is essentially like what kicked my anxiety into high gear back in June so I’m glad she told me about it so now if/when it happens I know that a, it’s temporary and b, it’s because of the meds not my intestines being fools. But I’ve been worrying about it and my panic attacks come with INTENSE abdominal cramps so you know, self fulfilling prophecy and all.

The other thing is that I started feeling pretty homesick today. Now, if I had to pick two things that I consider to be most core to the causes of my anxiety it’s a, feeling like I don’t have a home and b, feeling like I’m physically sick (I’ve had life threatening illnesses before so like I tend to catastrophize minor illness.). I have made myself literally sick due to homesickness before. Both of which are centered around the fact that I’m a control freak who thrives on information and logic and since surprise illness is a lack of information for me and homesickness is a lack of logic...I think you can see the problem. So basically right now the things that I find to be the most difficult to deal with are happening at once and I woke up this morning feeling jittery; like I had electricity dancing under my skin.

I kept my appointment with my councilor anyway, and rode in not one but two Ubers in traffic (cars and lines tend to be bad places for me because they make me feel trapped.). It sucked but I did it anyway so I try to keep that in mind but it’s still been a hard day. Then the fire alarm went off (it’s been doing that on and off all day in some of the neighboring apartments, but it went off in the whole building today.) so I just had to like leave...no prep at all. No mentally preparing myself, no nothing. Luckily it was over quick, but like I was already on edge and it was just another thing.

On the upshot, AC: Oddessy comes out tomorrow. :D At least...in the us it does, I guess I should check the uk release date or make sure I can get it unlocked for me to download on my Xbox account...

...also there’s people outside the pub down the street singing Adele to each other and honestly I kinda love this city.

[traumablogforme]

Wow, uh, I haven’t been on here in forever, it feels like at least. So, oof, where do I begin? I honestly don’t know but uh, here’s some venting shit, MASSIVE TRIGGER WARNING: There is mention of SA in this and abuse. It also mentions SH behavior. If you cannot deal with that right now, please move on.

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So I haven’t been on much due to an abusive relationship, it started about 2 years ago. (Some background, I am polyamorous. I have my fiancé and my and my fiancé now ex) my ex moved in with me and my fiancé and everything was fine, good, dandy, everyone got along and we all loved each other. Few months after my ex moved in he started arguments, would yell, scream, and storm out. All over small things, like asking him to do the dishes. He would pit me and my fiancé against each other, by saying stuff like ‘oh fiancé or me said your not doing anything or your being a POS and forces me to do stuff and yells at me all day’ stuff like that. So we would argue about it and then leave each other alone and he would swoop in and comfort the one that he didn’t get all riled up and be like ‘see this is what I’m talking about’. We moved places and it continued. We got into countless arguments were he would threaten to leave, he would manipulate us by saying stuff like we never loved him and we forced him to move all away across the country away from his family and how we never do anything for him. All of which wasn’t true. He got stuck out here at the beginning of Covid, but I digress. It got to the point where the other people living with us noticed something was wrong, and they wouldn’t stay there with us, they would go to their partners house just to get away from it all. There was fights every day, he called me pathetic, no good, useless, etc. It got to the point to were I was thinking of just hurting myself to be able to have control over myself for once. TRIGGER WARNING: SA Then it happened, he wanted to do the deed and I didn’t. He kept pressuring me, telling me that if I loved him I would do it and that we haven’t done it in a long time and you never want to be close to me, you think I’m ugly, you don’t love me, etc. so I gave in, let him do what he wanted and then went back to normal everyday shit. This happened at least once every other week, for a year and a half. I didn’t know at the time that was assault, I just felt obligated to do it because we were in a relationship. Fast forward a few more months and we are packing to move. Me and my fiancé bought a house, and ex was coming with us. He didn’t help pack, move boxes, or even unpack. He just wanted to sit there and do nothing. He thought it was all boring and pointless, just like he said with household chores. If it doesn’t benefit him, he doesn’t do it. Finally I reached my breaking point and told him he needed to get help or leave. He got help, but I don’t really believe he went to IOP, he never came back with new coping skills, paperwork, nothing. That went on for about 6-8 weeks and he stopped going, stopped seeing his therapist, stopped seeing his psychiatrist. (His GP had been prescribing his meds and he never came home with any new scripts or meds). So at this point it is October of 2021 and I’m done. We just had an argument over going out to do stuff, which I didn’t want to do so I told him he could go by himself and he flipped. ‘You never do anything with me, you are always in your art room, your always avoiding me, you don’t love me, I should just leave’ I had therapy that day after that fight, I told my therapist everything, she was the one that told me what he was doing was abuse and SA. So I called my friend and told her to come get me, I called my fiancé and told him we needed to talk when they got home since they went out shopping. I sit my fiancé down and tell him everything and told him we need to break up with him, I’m the one who has to do it because my fiancé has abandonment issues. I break up with him and tell him everything he’s been doing and it’s all of a sudden ‘I’m sorry, I’m sorry, please don’t leave me, I can change, I can change’ over and over, ‘you can’t leave me, your not allowed to leave me, I need you’ he’s sobbing, throwing himself to the floor, begging me, and I’m standing my ground. I told him he needs serious help and I can’t do it anymore. (Part 1)

[dxmedstudent]

What is your impression/impression of your colleagues towards physician associates, particularly American PAs that come to work in the UK? I'm currently exploring options as my husband can transfer to the UK for his work. We've both always wanted to live abroad for a time. However, as I look more deeply into the interwebs, I get the feeling that PAs, particularly American, aren't well received. Thoughts?

Hello! Long time no see. Sorry for the late reply. I actually went back to forums and had a re-read after getting this ask because I wanted to present the arguments (whether wrong or right) that I saw. I hope it helps, though I want you to remember that not everyone feels this way; people who don’t have any strong feelings just don’t bother debating things like this online. In real life, I’ve heard very little negativity about PAs from other doctors. I think most feel pretty neutral about the whole thing. But I don’t want to sweep things under the carpet. Personally, I’ve only ever worked with doctors’ assistants (more limited duties, mostly helping out with odd jobs, bloods etc, no clerking) but I have no problem with the idea of PAs, as long as their role is clearly defined so that everyone gets what they need. One of my good friends from biomed went to PA school after graduating, and I think she’s having great fun. So I want to approach this with the attitude that PAs are our people, too.  I’ll be honest, the topic of PAs seems to still be pretty be divisive amongst the medical community, from what I’ve seen on the big junior doctor forums. I’d say that there are people who are very pro-PAs, and others who are less enthusiastic. Though the reasons why are complex.

I don’t think the reception is anything to do with people being American, in the sense that i’ve never seen PAs’  nationalities be described as an issue. Despite occasional jibes, Americans are generally well liked here, and I’ve never overheard negative comments about a colleague’s Americanness. Is that a word? Feels like it should be. I’m actually sure US PAs might even be assumed to recevie a more comprehensive one than our own, if only because our own PA profession is very recent; we didn’t have PAs at all when I was younger. US-based training tends to be well-respected, as far as I know. The reasons for tensions between doctors and PAs here are many. First of all, PAs are a very recent invention. They have only been around for several years in the NHS. As such, we have a system that was built without their role, meaning that in order to have PAs at all, we need to make sure to carve out a role that does justice to what PAs can do, without taking away important opportunities from senior nurses/nurse prescribers/ANPs and junior doctors.This means that a lot of hospitals structure the role very differently, hence what a PA at one hospital does might not be the same as what a PA at another hospital does. This means if anyone wants to be a PA in the UK, it’s worth really shopping around, if you can, to see if you can get the most support and best role for you. I’d be really careful to make sure that the role made it clear what support is available for decisionmaking. PAs should have oversight from at least a registrar, ideally. I’ll come back to this later, but if anyone is making clinical decisions, it’s important that they are supported appropriately; I’m against giving nurses or paramedics or PAs or pharmacists prescribing privileges, just enough responsibiltiy to get them into trouble, but not giving people the right support for if they aren’t sure what to do. As a doc, having senior support is a big part of my job, and I think any one of my clinical colleagues deserves this, particularly if the government are trying to save money by getting them to do more doctors’ jobs so they don’t have to hire as many docs. And where PAs have in theory to get more junior docs to sign off on their decisions, lots of juniors aren’t comfortble with that idea. Because you generally have to be a bit more experienced before you can take repsonsibiltiy for others and their work. An FY1 or FY2 ‘supervising’ a PA wouldn’t be appropriate for either. And deep down msot of us docs feel that bringing in more ANPs, bringing in PAs, allowing pharmacists and paramedics and nurses to prescribe, a lot of it isn’t ultimately created with the interests of the clinician in mind. Ultimately the government does everything it does to save itself money, and given what they put junior doctors through in recent years, we are very, very bitter and wary with ANY government scheme. A lot of people worry  that bringing in PAs is just a way of the government trying to provide people to do doctor jobs on the cheap, without supporting them or training them up properly. And given that they’ve structured nurse training in such a way that trusts try to get by with as few senior nurses as possible, because it’s cheaper to have lots of HCAs and lower band nurses, I think all NHS workers have reason to be wary.   I’m going to spend most of this post outlining some of the issues that people have brought up in various threads, which aren’t necessarily issues I myself share, but I feel I have to discuss why some people are still adjusting to PAs cropping up. Not all doctors like the way having PAs works in practice, at least where they have worked. Some people grouse about the pay, because some of the PA slots advertised give a higher salary than you get for the frist several years of being a junior doctor, whilst most of them don’t do nights or oncalls, and have to take less clinical responsibility.  On the surface, it doesn’t seem fair; why should someone working better hours, and taking less legal responsibility be paid more? But I don’t believe in bringing everything down to the lowest common denominator; if anything, it should be an argument for better pay for nurses, doctors, physios, pharmacists etc.  In reality, I suspect they have made a few posts that pay unusually well to entice senior nurses to train up as PAs, and sort of get the ball rolling. The numbers are much smaller than the number of docs and nurses, so they can afford to pay more. Also, my colleagues have a point that that’s a PA’s final salary and that the job role is more limited, whereas junior docs (in our system, at least), get to train up to do different things, and eventually earn more.  Some act like PAs get a bad deal, others are envious; I think both jobs can be good if you’re the right person for that job. I’m sure it’s a better role for some people. Now, a small part of me can see why my colleagues are concerned. When you’re stressing about fulfilling the things you NEED for training, because otherwise your deanery and seniors will totally make out that you’re an inadequate doctor, it puts a lot of pressure on you to get your procedures and cases signed off.  I’ll be honest; medical training as a doctor once you graduate in the UK is minimal; we do our own exams. We have to arrange our own attendance at clinics (which is compulsory), we have to make sure we can get to compulsory teaching. We have to make our own opportunities to do the procedures we need to do to get signed off, see the cases we need, etc. We need to mke our own opportunities for audits, publications, etc. Apart from the occasional nice senior, literally nobody helps you to get all the things you absolutely need to do done. And that’s on top of the usual ward rounds, saving lives, dealing with pts and relatives thing, whilst often being extremely busy and understaffed. And rotating around every few months, so that nobody in the hospitals you work at Junior doctors are genuinely exhausted, overworked, and scrabbling around to get the opportunities they need to get by. Some of my colleagues report working in hospitals where because the PAs were permanent (not rotating) staff, they were given preference for audits, projects, research, procedures, surgery etc to the point where junior doctors felt sidelined and unable to get the training they need. Where they felt that rather than PAs taking on some of the “jobs everyone doesn’t like doing”  on top of clerking, they were given preference for the things both they and docs like doing, but also that docs NEED to do. And I’ve been in situations where I’m tired, struggling to get what I nee to do done, and I can see where they are coming from; I remember having an unpleasant evening, and wondering they were giving a GP trainee a chance to do a lumbar puncture when they’ll never need to do one in their line of work, when there are trainees in the dept that will need to do these procedures independently soon, but never get the opportunity. Of course, I reined in my childish brain, but the reason I felt that way wasn’t really because of my lovely colleague, but because of my stress at the lack of opportunities I got, which the system dictated I needed, but didn’t help me with. I’d never begrudged or been jealous of a colleague before so it was a low moment for me. But I’m sharing it because even generally nice people can feel jealous or let down if the system pits people against each other. And in scenarios like that, it’s not the fault of PAs at all; it should be up to hospitals planning their rota to ensure not only that staffing is well covered, but that trainee docs get enough opportunity to do what they need to do. And that PAs aren’t screwed over. I think blaming other employees is wrong, when the real culprit is a system that pits people against each other or doesn’t give people what they need to get things done. Now, there’s also a bit of rivalry between PA students and med students, more so than grads. Some PA students seem to go into it with the attitude that “It’ll be just like being a doctor, but you graduate faster”, and med students being med students, some of them will treat other clinicians with smug, unearned superiority. I have no time for either of these imposters, personally. Med students who think they are better than everyone don’t make good doctors until they get taken down a peg or two. We’re part of a team, and we can’t do what we do without nurses, physios, pharmacists etc, even PAs if they are part of our team. And people choosing beteeen the two courses shouldn’t think, wrongly that PA school is just the easy way into medicine, or “basically makes me a doctor”, because it’s dangerous to assume a level of competence or practice you don’t have. And because if you don’t understand the role you’re getting into, you may well be disappointed if it doesn’t meet your expectation. I think med students and PA students like this let both sides down, but I hope that real life will knock them into shape. The good news is that a lot of my colleagues on the group report that they’ve worked in places where having PAs worked really well. I think a lot of people would love having more people on the team to help. I’m certainly not against PAs if they are well supported. I think it has a lot of potential, and I’d like to see hospitals develop it properly. Where there were enough opportunities for both, and where PAs . I saw a lot of people say wonderful things about PAs, and defend them when things on the thread got more negative. I have hope for what our PA colleagues will do, I just think we’re still going through a transitional period with its own teething problems. We work well with nurse prescribers, with ANPs and with pharmacist prescribers; I believe we can work well with PAs. I just hope that trusts and the govt will do well by both docs and PAs, and that the relationship we eventually build will be fair to both sides. I suggest doing your research to see the kinds of jobs beingoffered, because they might not be as varied as they are in the US; some places definitely seem to offer jobs for PAs that are mainly paperwork, minor jobs with some phlebotomy, whereas other trusts have scope for clerking or more varied practice. And I would want to make sure that there’s an appropriate level of senior support for decisionmaking.

[renfys]

Mental Health Mum: Coming Off My Anti-Depressants

At the beginning of April, I started to come off my medication. My depression had hit a four year low, and my anxiety a four year high. To be honest it was all because of work. That was the root of my issues, and I realised then that my medication was no longer fit for purpose.

I’ve been on Seroxat (the generic name is paroxetine but I’ve always been given the brand for some reason) for about a decade. It was one of a few different medications I’ve tried for my anxiety and depression and at the time it made the difference. I didn’t really notice any side effects, but my anxiety was better and so was my depression. Not markedly so but enough to survive, to get by, without being suicidal or agoraphobic. My social phobia was really bad back then. It took a little while to get into a groove with them and adding Tegretol on as a mood stabilizer a few years later helped. I wasn’t diagnosed with BPD formally until a few years after that even but my GP seemed to think I needed them.

The Tegretol definitely helped with some of my outbursts. I came off that about a year ago because I just didn’t feel like I needed it anymore. The BPD diagnosis still stands, it’s never going away, but the worst of the symptoms have settled or subsided.

Medication Is A Good Thing

I was one of those people who didn’t want to comply with their medication. Because anti-depressants were bad. They changed you. I believed the stigma.

Needing medication for mental health problems is not a bad thing. There is nothing wrong with taking anti-depressants, mood stabilizers, hell, even tranquillisers if you need them. They are not “mind benders”, they do not turn you into zombies (and if they do, you need to either change the dose or change the medication). You may or may not be on them forever. Some are addictive, more aren’t. They save lives, they change lives, they can make the difference.

The first one you try might not work. But it might. What have you got to lose by trying? And what do you have to lose by supporting your friends or family who are taking medication?

The stigma around medication helps no one. And no, medication isn’t going to make everything better, but it can help and sometimes that’s enough. Given the state of mental health care in the UK, it may be your only option while you sit on a long-ass waiting list for counselling, therapy or whatever else you need.

People take medication for headaches, hayfever, diabetes, heart conditions, more and more and more physical symptoms alike. Taking medication for your mind is no different. I take painkillers for my headaches, and beta blockers for my panic attacks. I’m not ashamed of it. And I shouldn’t have to even clarify that point.

Coming Off My Meds

I’ve played with the idea of coming off the Seroxat for a little while. I wasn’t sure I really needed it anymore, let along such a high dose. I’ve had some GPs say I couldn’t have more than 60 and some say I could have 80mg. I hit 60mg pretty early on and stuck with it for most of my time on the medication. What had always put me off was the fact that any time I missed a dose or two (or a few) the withdrawals were a bitch. The headaches come first, then complete physical anxiety attacks, then suicidal ideation.

I wasn’t keen to experience any of that.

But it wasn’t really helping anymore, in fact, it was making my OCD worse. I’m not formally diagnosed with OCD that I know of (you lose track sometimes), but I had mentioned when I first started taking it, that it was making my OCD worse. I noticed on February how bad my eating issue had gotten (I’m a very fussy eater). Any dinner with meat in it was becoming very difficult to eat and impossible to enjoy.

So I needed a change but I had to get off the Seroxat first.

From 60mg to 20mg

The worst of those withdrawals haven’t happened this time around. At least the bit where I end up in a pit of despair. The headaches every time I went down a dose were awful, not migraine bad but enough that I actually asked for a box of 100 of my painkillers instead of the thirty I get from time to time. They passed after a couple of days, but I had to take the prescribed dose of painkillers (1-2 every 4-6 hours when required).

The anxiety was bad too, it’s only the last two or three weeks that I’ve not woken up to a panic attack or in the middle of a panic attack. My GP had already prescribed me a beta-blocker propanolol which works on the physical symptoms of a panic attack. So I’ve been taking one of those most mornings since April.

Coming down to 20mg was pretty easy, things got harder after that. I was going down by 10mg every two weeks; slower than my doctor had suggested actually. When I hit 20mg the anxiety got worse, but that was compounded by work and money issues again. I stuck with 20mg for a while so I go to some job interviews and then tried went down to 10mg.

Ten, Five, Zero

A selfie from May.

I tried going from ten to zero but that was awful. The anxiety was just unlivable. It really affected us all and it just wasn’t fair to my wife and kid. They shouldn’t have to suffer when I am. The propanolol helped but I can only take 40mg of that a da because it lowers your blood pressure and mine is on the low side of normal most of the time so any more would make me dizzy. I’ve got a lower dose tablet now cause some days even the 40mg made me dizzy.

So I went back on the ten for a little while, to get my head straight again before I started snapping the tablets in half and taking 5mg. That went okay actually, same as before. Headaches and panic attacks. I let my mind and body get used to that dose for a bit while dealing with life (work, interviews, toddler).

Now it’s been three days with zero Seroxat. I went from 5mg to 5 mg every other day to none because life is evening out and I feel really, really sick. I was dizzy on the days without Seroxat but not having had a propanolol to cause it. I kept going though cause I was so close and not it’s been three days and I can’t shift the headache but that will pass soon. The dizziness isn’t as bad a sit was, it doesn’t help that I finally caught the stomach bug that is going (my son had it last week).

I’ll stay off it though. People have been saying I shouldn’t be doing this now but I’m sure the worst is past. There’s never going to be a better time than now to get off it. There is no good time to change medication, come off it or start it. You just have to do it, would’ve appreciated a little more support in doing it though. It’s taken me three and a half months to do it.

Different Medication

I won’t be seeking more therapy, counselling or any other services from mental health. I’ve had therapy a couple of times and plenty of counselling. I’ve got as much as I’m ever going to get out of it. I had an OT for a while too. Recently they offered me a mindfulness course but I refused because I didn’t like the woman who offered it to me (she was dismissive and condescending) and I don’t think much of mindfulness.

I don’t know if I’ll try something else though. I don’t feel nearly as bad as I did in March and when I originally thought about coming off then I didn’t think I need them or anything. I’ve talked about it with the GP but right now the beta-blockers are good enough for the physical symptoms for now and we’ll see how things go.

If you have any questions about any of this or about my experience with other medications or my diagnosis please don’t hesitate to get in touch. Leave a comment or use the contact form. I will talk about any of this and help in any way I can.

Links

Mind

Mental Health Resources

Antidepressant Seroxat tops table of drug withdrawal symptoms – The Guardian

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[fidgetninja]

Med Log: Equasym Day 175-176

Medication: Equasym XL (UK) / Metadate CD (US) / Intermediate-release methylphenidate; 20mg morning dose, 10mg afternoon dose

Well hai there! It’s been a loooong time since I made a med update, but that’s partly because it’s been a long time since my meds/dosage has changed.

I moved cities in the summer and thus had to be put on a waiting list to go to another clinic. It look a looong time but a few days ago I finally got an appointment. It’s not a proper ADHD clinic and tbh I’m a bit despondent over the place, but that’s for another post. For now, at least I can get my meds tweaked again (GPs aren’t allowed to tweak, only prescribe an already established dosage).

20mg in the morning doesn’t last me the whole working day, so getting a booster dose is very welcome! The 10mg in the afternoon I’m not sure is enough for me to effectively concentrate in meetings and stay on task, but it’s certainly at least made me feel calmer and less overwhelmed in the afternoon, so it is doing something. 

This new place I only see someone every 3 months (ughh) so I’ll have to wait until January, but atm I’m thinking that another 20mg would do me well. My body seems to metabolise meds quickly, where I feel a strong negative impact on not-too-high doses and then the meds wear off far more quickly than stated. Whilst it sucks I have to take two dosages throughout the day, I prefer taking two 20mg pills spaced out than one 40mg pill that makes me feel drowsy and nauseous.

Honestly, I don’t have much to say about side effects. These meds are my life now and are very uneventful (which is v much welcome after all the side effects I got off other meds/dosages). I think they sometimes give me dry mouth but I’m not 100% sure on that.

Med positive effects are subtle and once again my new ‘normal’. I don’t think I would’ve done as well at work without them (and tbh I wonder if I would’ve been fired / quit from exhaustion/stress/burn out). I don’t ‘feel’ different. I just notice (if I consciously reflect upon it) that I’m more present in conversations, can stick to a task far longer, flit between tasks less, and procrastinate less. I also fidget a bit less. However my ADHD symptoms never fully go away - definitely not - but I’ve learned to accept that. Meds simply make them more manageable. 

[clatterbane]

Just reminded with the honestly much higher than expected ability to keep advocating for myself in the hospital coming up? As compared to the more usual experience of sensory overload and eventual medical PTSD causing meltdowns/shutdowns, and too often making me lose communicative speech in medical situations? (Unfortunately leading to more PTSD from the kinds of treatment that can get you, yeah. 🤨)

After I landed in the hospital with that long-building crisis over the summer, I kept getting impressed at how well I was managing to keep looking at least halfway functional and stubbornly keep speaking up for myself, in what would normally be terrifying circumstances. And kinda were still, but I could mostly handle it and keep chugging along.

Besides feeling halfway out of it and (unpleasantly) goofy as hell the first couple of weeks after the emergency surgery, likely from all the meds they had me on? I figured that I had pretty much just burned out on the overload and fear, and come out the other end at least temporarily in possession of very few fucks to give. Kind of like when I forcibly got burned out on my fear of needles, during another (traumatic) surgical stay in high school.

(I also totally expected that to catch up with me later and seriously bite me in the ass, once I was back in a safer situation. Rather like some of the things Mel wrote about hir Emergency Speech Mode. So far, so good with that, at least. *fingers crossed*)

I still don't know how much of the difference may have had to do with any of those factors--or additional ones which haven't occurred to me. I do know that my traumatized autistic ass has mostly been able to keep it up in medical settings, so far, and (I think!) come across as less of a flake who doesn't deserve to be taken seriously.

(I also have to suspect that masks have been helping me there, tbqh. If half your face is covered, nobody else can see you doing Wrong Face! 🙄 Not going to help with Wrong Body Language, but hey. ETA: I am also sitting in a wheelchair, which may well make a difference there.)

Anyway, I was also interested to find out recently that, besides nerve pain and epilepsy? Pregabalin is also apparently used specifically to treat anxiety.

It is also known to keep blood pressure from spiking as much with exertion, or I'm guessing anxiety. Maybe helping with the lack of PTSD white coat factor when I was in the hospital, yeah--and being off it then possibly helping with that latest blood pressure scare at the GP's office. 😑

Since I've been back on the stuff, along with tramadol, after their getting unaccountably stopped for over a month? I have noticed that I already seem to have fewer fucks to give. After only like a week, which is apparently roughly how long it tends to take to start working for pain.

And thankfully NOT in a scary "suddenly I just don't care about anything (and can do basically nothing)" sort of way, like has happened in the past with some psych meds.

Using pregabalin before trying some other drugs to treat anxiety really does strike me as an "opening walnuts with a sledgehammer" type approach. Unless there is some very specific, good reason to avoid using less heavy-duty options.

(Where a blanket "Benzos Are Now The Devil" policy--like the default here in the UK now, thanks to some earlier inappropriate prescribing--would not qualify. Similar with prescribing it for non-neuropathic types of pain that it isn't even intended to treat in the US more recently, because Opioid Madness. Not to mention neuroleptics for anxiety. 😵)

And that is, indeed, speaking as someone who has been diagnosed with/treated for just about every anxiety disorder known to humankind. Even if at least half of it was really coming from autistic overload. And has taken every major category of psych meds over the years, usually way more than one from each class.

But, as an unexpected and unintentional side effect, which at least so far hasn't been coming alongside other intolerable ones? I'll take it.

[psychotic-spectrum]

My experience with medications (long post ahead)

I’ve seen a lot of posts where people tell their experiences with psych meds, and since I’ve tried tons of them, I wanted to make my own post, and maybe help people in the process. All these experiences are individual and they might not be the same for other people, it’s just a guide.

My current diagnoses are BPD and schizophrenia-schizoaffective disorder. My previous misdiagnoses have been depression-anxiety, GAD, bipolar disorder type 2 and a dissociative disorder.

I’m gonna post the generic name of the medication and then the brand name, I’ll use the most popular brand name because in that way people would be able to identify them, but usually I use different brand names where I’m from.

Modafinil (Provigil) It was the first psych med I ever tried, a doctor friend of mine gave them to me after realizing I fell asleep everywhere, even sometimes standing up. At that time it was sold over the counter so I didn’t need a prescription. It was wonderful, I could have so much energy to work, to study, to go out at night, it was a life saver for me because that same year I started to study law and I was also working at the same time so it didn’t matter if I didn’t sleep because I still had energy and I could focus. I still use it today but the similar armodafinil.

Venlafaxine (Effexor) It was the first antidepressant I ever took, it was prescribed to me after I went to see a psychiatrist that had zero empathy and he diagnosed me with depression after talking for about ten minutes. I was really stressed when I saw him, but he decided I had depression even though I didn’t experience any symptoms of depression. He also gave me a “deal”, one box of Effexor and the next one free. Still I took it and it was terrible. I was sleepy as hell and nauseous, I couldn’t eat, I might‘ve lost at least a kilo in the month I took it, and it did nothing for my stress. I stopped taking it after a month and then I felt better.

Escitalopram (Lexapro) It was prescribed to me first by a GP after seeing my colon and stomach problems wouldn’t go away with medication, so she thought I needed something for my mood (I hadn’t been diagnosed with any mental illnesses at that time). It was kinda weird. It made me sleepy but I felt high, like as though I’ve been smoking weed, I felt pretty relaxed and I liked the effect, and I had no side effects. My friends said I talked weird, like a typical pothead, but it was the medication! I was on it for about a year.

Fluoxetine (Prozac) I was prescribed fluoxetine after a visit to another GP due to my colon problems, at that time, I had already seen a psychiatrist because I was in crisis and I had started self-harming (but I didn’t say it to her), she diagnosed me with GAD and increased my escitalopram. I was also seeing a psychologist on and off. When I went to see this GP, she said that fluoxetine was more effective than escitalopram for anxiety that caused my colon problems. Fluoxetine was great, I felt I had more energy, less appetite and I felt happier (by that time I already had mental health issues), but later when they prescribed fluoxetine for BPD, I was in such a high dosage that I started to feel numb, with no emotions. I remember seeing Steven Wilson, one of my favorite singers and feeling like I couldn’t cry with his songs. Later the dosage was reduced. I still take it nowadays but a low dosage. It helps.

Clonazepam (Klonopin) By the end of 2011 I was in a complete breakdown and I started having panic attacks. A doctor then prescribed me clonazepam and it was fantastic, I loved it. My anxiety was gone, I could do the things I wanted to do, concentrate, my mind wasn’t so active. It made me sleepy but it was tolerable. I stopped taking it because I grew a tolerance towards it.

Risperidone (Risperdal) OMG, I have a love-hate relationship with this medication. It was first prescribed for BPD, to control the self-harming urges. It was my first experience with antipsychotics. At first, I hated it, it made me really sleepy and foggy, it was hard to wake up, but I felt I improved a little. The downside? The weight gain. I could never get my pre-medication weight back. I’ve been on and off it since 2012, and now I take it every day for schizophrenia. It has done wonders for my psychotic symptoms, and I no longer feel foggy or extremely sleepy, I got used to it, and it works. It makes me more stable, so there’s no way I’m gonna go off this med, despite wanting to lose weight. It’s more important to be stable than thin. But the current side effects are: akathisia, zero sex drive and I stopped ovulating, so I can’t have kids right now (not that I’m looking for kids at the moment anyway)

Quetiapine (Seroquel)Oh boy how much I hate this drug. It was first prescribed after a psychiatrist changed my BPD diagnosis into bipolar disorder. At first, I was so unwell that I liked being almost unconscious from the drug. I couldn’t wake up on time, I fell asleep at work, everywhere I felt like I had no energy whatsoever. The year I was prescribed this med (2013) I started working two jobs and I had to take tons of coffee and modafinil to be able to perform in those jobs. I grew intolerant towards it, until one day, without asking my doctor, I simply stopped taking it, and I felt so good. I had energy again, I didn’t fall asleep everywhere, I didn’t need coffee 24/7, but I started experiencing weird psychotic symptoms. My doctor then decided to switch it to risperidone, but I was in such a low dose that didn’t help with my symptoms. But I was feeling fine so I didn’t really care at that time.

Lithium Since I was diagnosed as bipolar in 2013, my doctor said I should take lithium, I didn’t want at first, mainly due to the stigma associated with that drug. It was supposed to make me more stable, but I never felt stable with it. I also gained weight and I got acne. It did give me energy though, but since I took it with quetiapine, I didn’t really noticed it that much. I was on it for a year or more, until I went to the hospital and they stopped giving it to me, without knowing that my diagnosis was about to change.

Haloperidol (Haldol) I was first prescribed a low dosage after I started having auditory hallucinations, and it was great, the hallucinations stopped. Since I was only on 1 mg I didn’t have extrapyramidal effects and my muscles weren’t stiff. I stopped taking it later and replaced with a higher dosage of risperidone. When I was hospitalized, they started giving me 5 mg in the morning and 5 mg at night, and I felt completely numb. My brain had shut down. I had no motivation; I felt everything was plain, nothing excited me and also I had extrapyramidal effects. I felt dull, like my wits had gone. I took it the month after I left the hospital and I asked it to be switched to another antipsychotic. Now I take 1 mg prn when I feel psychotic and I haven’t had any side effects.

Lorazepam (Ativan) I started taking it at the hospital, they gave me 6 mg a day. I must admit that I love it. I feel my inhibitions are gone, I don’t feel so anxious, I have no problem showing my self-harm scars and it relaxes me as hell. But I get reaaaaly sleepy. I was supposed to take it when my anxiety was through the roof, but now I take it every day and I crave for it. I take 2 mg a day in the afternoons, and it makes me happy and high. I’ve become dependent on it and I don’t plan to change that.

Lamotrigine (Lamictal) When I was diagnosed bipolar, I took it as a mood stabilizer together with lithium. I didn’t experience many side effects, but I felt like the pill blocked any negative feelings, it’s like, a negative feeling popped into my mind and I could feel the lamotrigine blocking it. I took it for about two years.

Alprazolam (Xanax) When I grew tolerance towards clonazepam, I was prescribed alprazolam for anxiety. I took it every day and it made me feel really good, relaxed, and not as sleepy as with lorazepam. However, I also grew tolerant towards it so it was switched to lorazepam.

Aripiprazole (Abilify) I remember I went to see my psychiatrist almost crying for the gain weight I was getting from Risperidone, and I had done some research and read that aripiprazole was weight neutral. It is extremely expensive though, but I had insurance at that time so I didn’t care. I was only two weeks with it before my hospitalization. After I got my diagnosis of schizophrenia, and since I wanted to stop taking haldol, my doctor prescribed me the highest dosage of it (30 mg), but I still had to take risperidone. Even though it wasn’t that effective with psychotic symptoms, I felt no side effects while on it. I had to stop when I lost my job and my insurance, because I just couldn’t afford it.

Amisulpride (I don’t know the brand name) I don’t have much experience with it, only that I had to take it for a couple of weeks due to increased psychotic symptoms. It made me sleepy and foggy, I can remember.

Bupropion (wellbutrin) Being taking it since 2015, I like it a lot. It gives me energy and helps me to focus, at first I felt tachycardia as a side effect but it didn’t last long. Since I’m on so many meds, I can’t actually tell what it really does, only that it makes me feel good.

Armodafinil (Nuvigil) It was prescribed to me after I grew tolerant towards modafinil. The effect is quite similar, and I feel no side effects. Sometimes, if I’m too medicated with other things I can barely feel the effect. I think it’s more like a placebo to pretend I have energy.

And… that’s it I guess? My current meds are Risperidone 4,5 mg, Fluoxetine 30 mg, Bupropion 150 mg, Armodafinil 75 mg, Lorazepam 2mg, Haldol 1mg prn.

If you have any questions, just send an ask or reply to this post.

[broke-bitch-diaries-blog]

Can I just get well already? It’s been two days.

I knew the week I was having was too good to be true -the universe had to fuck me over again like it always does. I’m surprised how I didn’t get all suspicious about my good luck and an even better mood. Who’s happy for a whole week? Definitely not me. So, as per usual, the universe chose to kick me in the arse as hard as it could and made me ill.

I’m not gonna lie, I haven’t been this ill in ages. I also didn’t have to do the whole adulting thing the last time I was this ill. I had my mum there to make an appointment for me, I had my dad picking up my medication and my brother making me tea up to twelve times a day (yes, I do like to use my illnesses as an excuse of being useless and having people do things for me). But here, I am on my own. It all started Friday night -woke up from a nap with a sore throat. It wasn’t bad, so I shrugged it off as a cold and didn’t think too much of it. That shit got worse in mere hours. I felt as if my throat was closing up by how badly it was swelling. It was time to face my fears and check if I was once again visited by the tonsillitis fairy. I took my broken mirror, turned on my phone’s flashlight and opened my mouth as wide as I could. And there they were -white spots of pus on my tonsils. Instantly, I got annoyed, as I realised that I’ll need to make a doctor’s appointment and go pick up meds and actually take care of myself, like the adult that I’m supposed to be. With a slight feeling of dizziness caused by a fever, I stomped downstairs to go pick up my mug and salt. Gargling salt water was always one of those things you do when you’ve got tonsillitis, sinusitis or even a sore throat. I have no idea why, but it kinda’ works. For like a second. Then everything sucks again.

In the morning, I woke up feeling like a human bin-bag. As soon as I sat up, I started coughing up blood and pus (probably should’ve grabbed some tissue before I coughed all over my onesie, but I didn’t think about that). Disgusting. Thought about going to my GP -those fuckers weren’t open. Didn’t know what to do. My friend offered to call 111 -a non-urgent health line. The lady that talked to me was not only super nice and thorough with her questions, but she booked me to see a different GP in a health centre fifteen minutes away from my house the same day. Unlike the hospital, she thought it was serious and that I couldn’t wait until Monday when my GP actually worked. While I was still feeling like complete shit, I got dressed, drew on some eyebrows so I didn’t look that horrible and left the house for my appointment. Not gonna lie, being sick and trying to understand where Google Maps is taking you isn’t a fun experience. I honestly thought I was lost when the app told me I’ve reached my destination. All I needed to do was look to the other side of the road. Took me about three minutes to even think about doing that and another two to find a crossing since the streets in that neighbourhood were hella busy. 

So, I walk into the health centre, tell the receptionist I have an appointment at three. She asks me to sit down and wait until I get called. As I do that, an angry chav starts screaming her head off at the receptionist, calling her and the whole health centre idiots and druggies, telling the poor receptionist that if she goes into the bathroom and dies, it’s gonna be on her. She tries to enter the toilets -locked. Someone’s in there. Seconds later, a guy storms out and screams at the chav to fix her attitude and runs downstairs and out. While she goes into the bathroom for a second, the receptionist runs to get some guy from downstairs. While she’s out, the chav leaves the bathroom. Who’s the only person in the area now that the receptionist left? That’s right -me. She fixates her eyes on me, lifts up a piece of aluminium foil in her hand and proceeds to tell me how the guy that left was smoking heroin in there and she needs to tell the receptionist. Thankfully, before I have to answer, the receptionist comes back and deals with the situation. Turns out the chav was right. The guy did smoke heroin in there. At this point, the situation has my full attention -what an amazing neighbourhood. Soon enough, I get called in. I tell the doctor that I think it’s tonsillitis. He confirms my suspicion, tries to pronounce my last name at least three times before giving up, prescribes me antibiotics and lets me go. 

As I’m walking back through my neighbourhood and towards Tesco’s, one of my neighbourhood junkies compliments my coat. How nice of him.

Get my meds, get some extra stuff from Tesco’s, get home, fall on my bed, realise my flatmate’s kids are over again, get annoyed at them being loud, do nothing because of my fever. I literally angrily laid in bed until they shut up (one of them is screaming in the shower right now, as I am writing this. Isn’t it weird how the kids are eleven, but their dad still stays in the bathroom when they shower? Should I call child protective services? This is not normal back at home. Seems kind of paedophile-ish, not gonna lie). Eventually, took some meds and fell asleep. Spent the whole day sleeping. Keeping in mind the fact that I was too dizzy to make food that whole day up until forcing myself to do so at around 10-11pm, imagine how confused and disoriented I was after my nap. Ate canned ravioli, threw up from the pain that swallowing the food gave me, went to bed.

Started this morning by throwing up as well. How exciting. My whole mouth and throat were filled with pus and bits of blood, so, as soon as I woke up, I ran to the bathroom and threw up. Twice. Throwing up when you’ve not really eaten anything in the last 24+ hours really isn’t pleasant. Still didn’t eat anything but soothing lozenges after that and napped up until I had to take my meds again. Not gonna lie, I still feel horrible, but at least I made some stew, which was soft enough to eat and I didn’t throw one bit of it up. Success!

A normal brain would go into survival mode at this point, telling the person to eat as soon as possible, right? My dumb eating disorder brain kept suggesting that not being able to swallow the food or keep it down is a good thing since it results in lower caloric intake. And still, I’m not letting the ED thoughts win. I know I have to eat if I want to get well by Tuesday (which is extremely important since I have an exam that day). Sure, I’m not gonna be fully cured of tonsillitis in three days, but as long as I can concentrate on my exam and actually get a decent grade, I should be good.

Fucking hell, this upcoming week is gonna be hard. At least last week was good, right? Gotta keep things balanced.

-D.

[cripthevoteuk-blog]

Disabled in Theresa May’s Britain #35: Alex [CW: suicide]

From Cardiff

I am a Canadian who moved to Cardiff for a job. I was diagnosed several years ago with primary hypersomnolence, a rare neurological sleep disorder that means when I am not medicated, I often end up sleeping 16, 18 or even 20 hours at a time. When I received my job offer, I had been taking modafinil for my condition for about a year. Thankfully, even though modafinil prescriptions are usually only provided a month at a time because it is a restricted class medication, my sleep doctor in Canada gave me a 3 month supply just before I left, to tide me over until I could get a new prescription in the UK. Little did I know that I would not receive another prescription until six months after I had arrived in the country, and that it would be another two months before I received a prescription at the right dose. 

I registered with a GP surgery during my first week in the UK and made an appointment as soon as I was on their patient roster. I informed them about my health condition, said that I was taking modafinil, and mentioned that I was starting to experience some side effects and would like to explore other treatment options, but wasn't sure how best to go about this. My GP said she would look into it. I never heard anything back. About six weeks later, I made another appointment with my GP to remind them that I needed to be referred to someone who could treat my sleep disorder. The GP I saw that day told me there was no such doctor in Wales. (I later found out this was not true.) I asked her what my options were then. She repeated that there are no sleep doctors in Wales. I asked if the GP surgery would be willing to provide me a refill for my modafinil if I had my sleep specialist in Canada fax them a letter. She said no. I asked if I could be referred anywhere else in the UK then. She told me that is not permitted (I later found out this is not true). I asked whether I would need to see a doctor privately, and how I could do this. She ignored me, and said she'd have to refer me to a psychiatrist because they're the ones who deal with the kinds of medications that are used to treat my condition. I went home and waited for my referral to go through. 

About three weeks later, I got a letter in the post with an appointment for a phone consultation the following week. I stayed home from work that morning to take the phone call. The woman on the phone asked what my concern was and I told her that I had a diagnosed neurological sleep disorder and was in need of someone who could treat me - or at least refill my modafinil prescription, as my supply of medication was by now running very low and I was rationing it to every other day, which was making it difficult to perform at work. She told me they couldn't do that. She was actually calling from the Access and Assessment and Brief Intervention team from mental health services. 

The psychiatrist to whom I'd been referred had taken one look at my file, and concluded that it had nothing to do with his practice, but decided that since I had a history of depression he may as well refer me to an intervention team. After I assured the woman that I was in need of neurological treatment, not psychiatric intervention, she told me I should make an appointment with my GP and request a neurology referral. I rang my GP surgery immediately and requested an appointment later that day but they told me only urgent appointments were available. When I told them that I was in urgent need of a correct referral to obtain the medication that keeps me conscious, they told me that did not qualify as urgent. 

I rang them at 8am the following morning and thankfully got in to see the doctor that day. It was the same doctor who had given me the psychiatry referral. I told her what the woman on the phone had said to me, and requested a neurology referral. She told me there was no way a neurologist would prescribe me modafinil but when I insisted she rolled her eyes and said she'd see what she could do. I waited another four weeks and heard nothing. By that point I was restricting my modafinil to two days a week, and resorting to working from home quite a lot because it enabled me to nap when I needed and work odd hours whenever I happened to be awake. With four weeks passed, I rang the referral department at the hospital to find out what was going on. They informed me that my GP had provided a 'standard' rather than an urgent referral, so my wait time for an appointment would be approximately one year. I rang my GP and said I wanted to speak with her. I was told she was unavailable but that she would call me back later in the day. I did not hear back. 

The next day I called again and was told by the receptionist that the reason I had received a standard referral is because "urgent referrals are only for suspected brain tumours." I asked if they understood that I had a two week supply left of the medication that keeps me conscious, and that without it I was unable to work or to function since I was, well, unconscious. They told me that didn't qualify as urgent. 

The next day I made an appointment and was seen by a different doctor at the same surgery. She repeated that urgent referrals are only for suspected brain tumours, but said that she could request an 'expedited referral', which would happen at the discretion of the neurologist. I asked her to please do that. 

Five months after arriving in the UK, I completely ran out of my medication. I went AWOL from work for a week because I wasn't aware enough to realise I should probably ring them to let them know what was happening. I couldn't make it out to go grocery shopping and I couldn't be sure I'd stay awake long enough for food delivery to arrive, so for a week I subsisted off of a block of marzipan I had in my cupboard. When I finally woke up a bit toward the end of the week, I rang my mum in tears and thankfully, she offered to fly to the UK to help me. I called my GP and told them I hadn't eaten or bathed in a week and apparently that was enough to qualify me for an urgent appointment there. 

The doctor I saw that day told me that I'd just have to wait for my neurology appointment (fortunately, I'd finally received one, that was to take place two weeks from then). He wrote me a sick note to cover me for a month of absence from work. Two weeks later I had my appointment with the neurologist. When I told him I'd been experiencing cognitive deficits related to my condition, that it was impacting my ability to work, and that I was concerned, he replied "you sound fine right now; I'm not worried." When I mentioned that the modafinil had been causing some side effects and asked about the possibility of switching to another of the meds commonly used to treat primary hypersomnolence, he refused. When I asked why, he said "I won't prescribe those for hypersomnolence." I later learned this was likely because they are second-line medications and the way they are budgeted for means that doctors are discouraged from prescribing them. He said that the best he could do was prescribe me my modafinil at a quarter of the dose I'd been taking, and that hopefully that would mitigate the side effects. (It did not. It did however mitigate the actual useful effects of the drug. However, it would be awhile until I even received that prescription.) 

A week after my appointment with the neurologist, I'd still heard nothing from his office or from my GP. I rang my GP and they said they'd heard nothing from the neurologist and could do nothing until they did. I rang the neurologist's office and his administrator informed me that he hadn't yet prepared the recommendation letter, but that he’d had an accident and would be off work indefinitely. When I asked what this meant for me receiving my prescription, she repeated that he'd be out of the office indefinitely. I rang my GP back and they said they would ring the neurologist's office to see if they could fax his notes from my appointment to my GP. The next day I rang the GP again; they'd left a message with the neurologist's office but hadn't heard anything back. The next day I rang again; they’d still heard nothing from his office. This began a two week period where I and my mother rang the neurologist's office multiple times per day and never heard anything back. A week in, the receptionist changed the outgoing message on the voicemail to request that patients not leave multiple messages. 

Two weeks in, my mum went to the neurologist's office and refused to leave until they faxed my records to the GP and rang the GP to confirm they had received them. It took my mum two and a half hours to convince the receptionist to do this. It took five minutes for the fax and the phone call. The next day, I finally had my modafinil again, though at such a low dose I was still having to ration it, and was only able to return to work part-time. 

My parents ultimately supported me to see a sleep specialist in London who prescribed me modafinil at the correct dose, enabling me to return to work full-time after three months of absence and one month of part-time. During that four months, I was suicidal. I was terrified of losing my job. I was terrified by the resurgence of my symptoms. I wasn't able to do basic things like buy or make food, or shower. I was terrified by how utterly powerless I was in this situation. I was terrified and angered by how little anyone seemed to be interested in helping me. I don't know what would have happened if my mother hadn't been able to come over, care for me, and fight for me. I am incredibly privileged that my parents were able and willing to support me through this - though it's worth noting they have now had to delay their planned retirement by several years because of the cost of mum taking several months off work, flying over and caring for me, and paying to see a private specialist. I felt incredibly alone whilst experiencing this, but as I have become more familiar with the experiences of other disabled people dealing with the bureaucracy of a severely underfunded, devolved NHS, I am realising what I experienced is quite standard. We hear a lot about how they are trying to kill us off by denying benefits, but the dismantling of the NHS is the second major battlefront of this regime's war on the disabled. They are denying us healthcare so that we will disappear.