I am beyond angry, frustrated and exhausted at this point. My emotional, mental health, physical cup has been constantly over flowing with water and now it feels like that same water has heated up and boiling over.
During my last god awful psychiatrist’s appointment on Jan 16th, I explained VERY clearly to him that I will NOT be able to afford all these expensive meds which don’t even work and have to come off them. This included the Restoril, at 15 mg that he made very clear that is for sleep only. I knew he just wouldn’t listen. So I did some research previously and found 3 meds which wouldn’t cause any weight issues and solely for sleep and he finally said come off the Restoril and take Bromazepam 3 mg ( I found) which was much cheaper option. However, if 15 mg doesnt work why in the hell would putting me on 3 MG work? As soon as I took them, nothing, like ZERO sleep happened.
In my case, he said the mirtazapine I’ve been on is to help with depression. I have been extremely depressed since the beginning of 2022 ever since I realized my “partner” was cheating on me with someone who lives in the USA and still haven’t gotten over it because they think nothing is “wrong with it”.
The Quetiapine was given to me to help with “voices”. Now first of all I haven’t heard “voices” since Nov of 2021. Secondly, when I did hear them the first time I was completely sleep deprived like I am now and didn’t realized (until long after my last 3 week hell of a hospital stay) that the doctor had diagnosed me with schizophrenia spectrum disorder which I don’t have! Which to me is yet another MISDIAGNOSIS put on my permanent file. Do you know how utterly soul crushing and detrimental that affects my state of mind every day for the rest of my life? Knowing that I don’t have something yet diagnosed with it? Do you understand the stigma attached to a schizophrenia?! Now every doctor I will ever see until I die will see that on my file! Anyway, he insists on me continuing to take them despite knowing I don’t have the money nor the patience to deal with someone who is not understanding that I just need my 8-9 hrs of sleep AND feel refreshed. So I asked him, “how can I obtain/take these pills that aren’t working when I have NO MONEY in the bank?” He said, “Well that’s up to you.” The Quetiapine WAS ONE of the medications that made me hypnotic at night which made me sleep walk, sleep cook/eat ( nearly burning down the house multiple times which made me have tons of arguments with my mother in the middle of the night), made me put on almost 100lbs, caused me to have high blood pressure, high cholesterol, and high blood sugar ( with my General Practitioner (GP) announcing that I am now in category of prediabetes, and if I don’t do something I will become diabetic and yes diabetes runs in my family). I believe the Aripiprazole was the other one that made me put on that weight but I am not on that any longer.
Since then my GP wrote a prescription that I use Ozempic to decrease the weight (since changing my diet, daily exercising, and drinking only water weren’t working) and she confirmed my suspensions that it was in fact the PILLS were making me stay over 205 lbs and not allowing my body to loose any more weight. Since then I ‘ve been begging her for Ozempic samples because I can’t afford $250 per pen that only lasts 1 week… yea I’m at the maximum dose 2 mg. Now all of a sudden my GP won’t give me any samples and all of a sudden my one and only source told me that they don’t supply Ozempic samples any longer either. So by then end of next month I’ll be off Ozempic too. When I explained the situation to my GP, SHE also said, “I would recommend you not stopping those medications the psychiatrist put you on.” So I asked, “Well if you have the money for them, I’ll gladly start taking them again.” She immediately changed the topic.
In the end, I’ve decided to speak with pharmacists instead because some of them seem to have more common sense than the Doctors I’ve had regarding what meds with side effects that put on weight or hypnotize me during the night. By then, it was over 2 weeks of no sleep ( averaging 0-3 hrs per night). When I reached out to the first pharmacist she immediately started sending me links to crisis centres. I said those don’t work for me, I’ve tried and they make things 10 times worst. I need to speak with someone who knows about medications solely for sleep. She then proceeded to send me those same stupid links. So I ended the chat and opened another one and explained the situation. And guess who answered? Her AGAIN and she sent me the same damn links. I said I don’t want to talk to you. I want to talk to the other pharmacist who knows my situation and get her to fax the doctor that the Bromazepam doesn’t work. She said she’s just faxed it and will leave a note to my preferable pharmacist for Friday. This was like a Monday or Tuesday morning all this went down. I said thanks and waited until Friday. The nice pharmacist got right back to me early Friday morning and said no word has come back from the Doctor so she’s about to send another fax. I said thank you and waited. Within a few hours, he responded with ” he has advised to take the mirtazapine, quetiapine with the current bromazepam dose”. Can you believe the asshole? The pharmacist also said she told him about the cost of the medications again on my behalf, however he said “but this is what he recommended to help with your sleep in the meantime. ” She said she responded to him again about the cost and awaiting a response from him again. I told her how much I appreciate her for the update and advocating on my behalf. Unfortunately, I know he won’t budge with a response to this request but thank you so much again for everything and not to waste anymore of her time trying to convince him because I am officially done with him.
So as of the 10th of Jan 2023, I have not gotten a good nights sleep. The most I’ve received is 0-3 hours per night. Its torturous, draining, seeing double vision, dropping/tripping over things and it’s pretty difficult to drive. To put the icing on the cake, it’s now mandatory for me to see the asshole psychiatrist in person. So on Feb 13th I will be driving over 25 minutes and paying expensive parking to see this asshole. I’ve honestly hated this psychiatrist and this current GP from the start but the TWO of them being so insensitive and heartless at the same time like for me is TOO much.
Oh and by the way I called and tried to make an appointment with my previous psychiatrist (at least she tried listening to me) to see if I could get her back and according to the receptionist she said, “you haven’t been here for 3 years and all your files have been sent to my current psychiatrist plus she’s not taking new patients. And even if I put my name on a wait list which is over a year, I won’t get her and get who ever is available.” So I gave up on that plan. Then when I asked my GP about sleep medications she said she doesn’t deal with that and then out right refused to put my name for a new psychiatrist wait list even though its a 18 month wait. When I asked her to my name on it anyway, she said “No”. I said “No?” She said “No. I don’t want you going without a psychiatrist when you already have one and don’t want to burn any bridges.” I had to get off the phone with this bitch because I have no idea what bridges I have with anyone. She’d rather have me stay with a fucking psycho who refuses to believe my financial situation, who will categorize me as difficult/uncompliant patient and who will try to push more misdiagnoses and unaffordable non working drugs on me that will eventually kill me. She did however suggested to send a referral to a sleep clinic. But to me that sounds like a bunch a tests I will have to endure and no actual prescriptions for medications. I even went to a walk-in clinic and tried to explain to the doctor and she told me I have no file, no history on you so I am not sure what your expecting me to do. Try sleep hygiene but other than that go to the crisis centre. Sigh, so either way, as of right now I have no doctor who understands my need for sleep so, what’s the point to going to them. I literally have no body that can help me.
My new plan is to go to this psychiatrist on Feb 13th and tell him NOTHING except for either increasing the dose to maximum or put me on something else completely different that I can afford. If he says no, I will leave and call service ontario to help me find another health care provider/s who knows how to deal with autistic adults with sleep deprivation/ chronic insomnia because clearly these two could give a fuck less about my autism and difficulty sleeping and how it effects EVERYTHING I do, down to my reasoning, emotion, logic and thinking. And if he some how says yes and gives me those increased dose or new medication and they do work, I am still going to call service ontario and ask them to help me find another health care provider and just wait. I am suffering anyway on my own. The unfortunate thing is, there is no timeline. They even told me they can’t give me a general time (ex. like a year or 2) as to how long it will take to find a new doctor. Either way I am screwed sleep wise for an unknown amount of time. Tomorrow makes 1 full month of sleep deprivation and I wouldn’t wish this on anyone but hey, who cares.
Lastly, yesterday while I was crying about loosing my last rabbit, I got a random text from my mother accusing me of being disrespectful, ungrateful, extremely entitled, and treating her like she’s not a human. First of all, I have no idea what she’s talking about and secondly how can I do ANY of what she’s accusing me of, while I’m constantly sleep deprived, have double/ blurry vision, keep bumping/ dropping into things and literally have no energy to get out of bed? Once again, some autistic adults shutdown/ meltdown when their world keeps crashing down, in constant miscommunication and literally everyone telling them no. And I have been having multiple episodes of these symptoms multiple times a day. So I responded, “As soon as I hear from the government about my financial situation, I’ll find another place and she won’t have to deal with me anymore.” Apparently that pissed her off even more because she wrote another hurtful text but honestly I literally don’t have the energy to respond. Thanks Mother, kick me when I’m already down. So now, the first time in my life, I have absolutely no one in my corner. I don’t know what’s gonna happen to me but, if your struggling I hope you have someone you can turn to. Maybe you’ll have better luck than me.
Take Care,
Ren
Once You've Met One: Advocating For Yourself 