Hello all! All I have to say for now is that the megas must flow 
As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:
“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
Mask up, love one another, and stay alive for one more week.
My kiddo missed 2 hours of their school field trip because the transportation company contracted by the district sent a bus with a broken wheelchair lift
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People like that are one of my pet hates in life. I’ve had the same nonsense, mostly about the effects of my cancer meds.
“Oh look, that person has cancer but they achieve more than you do, make more of an effort.” Yeah that person has a completely different cancer, with different meds and different side effects to me, is it any wonder they have a different outcome?
“Look that person has cancer but they are always smiling and cheerful, not miserable like you.” Yeah well they also have a supportive family, plenty of money and all the help they need. They aren’t alone and living in poverty, fighting a benefit appeal while begging for food.
Or issues with my stroke, “What do you mean you can’t lift that furniture/do heavy labour/other intense physical effort. You are 30 years younger than me and I have a bad knee, you should do it.” Um yeah I’ve also had a stroke, I can’t even walk properly any more and my left side is so weak it gets injured from normal daily activities. I struggle to even put on my own socks. No I can’t carry your bedside cabinet down the stairs or carry a huge sack of soil out to the garden.
they are always smiling and cheerful, not miserable like you
Also, while some cancer patients might be happy, this could also be a facade. I’m sure I’m not the only one who has acted happier then I really am.
I really hate the assumption that just because someone is younger you can pawn off your work onto them. I’m physically able and willing but at least ask and be grateful, you aren’t entitled to this. At least be nice.
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my father just told me he’d be super depressed if he had to “live my life forever”
“stop being disabled or stop being happy” i guess?
I had the unfortunate pleasure of meeting Big Pharma’s New Golden Goose today. Or rather, it’s the plantinum goose, insulin is still the golden goose. As it turns out, ozempic makes a lot more profit for Big Pharma. A relevant, yet minor detail is that ozempic and insulin share some chemicals. While ozempic is not necessary for survival for a large group of people on this planet, insulin very much is. Chemically produced insulin has been modified so much since its inception that it is, at this point, possible to develop allergic reaction to some of of them. Guess who has had an allergic reaction to quite a few insulins over the years? Exactly. Now, guess next which insulin I have no allergic reaction to? Yes, the one that is produced by the company that makes ozempic and is currently churning it out in gallons. And to conclude, guess now which group of people has to conserve insulin for a few months not because of the prices (alone) but also because their survival is not as lucrative as some people wanting to take almost the same chemicals to lose weight? Exactly, diabetics like me.
This shouldn’t be this way. I don’t mind people having access to ozempic, nor do I mind them using it to lose weight. What I do mind tho is that profit made with this drug is evidently more important than keeping people alive that really don’t have to die anymore in a “modern” society. Nobody needs to die of diabetes anymore, heck, nobody has to go blind because of diabetes anymore, nor do they have to lose limbs from this shitty disease. There’s enough medical expertise, medication and care to go around and save everyone from long term follow-up diseases. But no, again, profit is more relevant than anything else.
This is appalling. Just when I think I can’t be shocked any more. Sorry you have to deal with this shit. Depending on medication for survival is awful enough already. I can’t imagine the stress of having to pay for it too. This world is sick.
Thank you sweetie, I appreciate it
The good news, after a couple of hours of calling different pharmacies, I finally found one that could actually get their hands on one last package of insulin. So I’m set for some time. Let’s hope that by mid-June, the company will keep their promise of restocking their insulin reserves. Or alternatively, just fucking produce more of the substances.
I go through a similar thing with my thyroxine, but not due to cost, it’s because there’s only one brand that agrees with me and sometimes it’s out of stock, sometimes the pharmacy just ignores my request for this brand and gives me a random one, which takes ages to sort out and the whole thing is a nuisance. I try and stockpile a bit for times like these. I’m glad you got yours sorted for now. I hope the insulin company gets their act together.
Me too, and thank you
The thyroxine is so difficult to adjust to. Had a family member who had to take it too and it took them years to figure out which brand actually did the trick. It’s horrible, how little care is being taken to make sure people get the medication that works for them.
Yeah even with this brand I still have problems and don’t feel good (but the others are much worse). It gives me heart problems, brain fog and the endo says likely contributed to or even caused my stroke and the food intolerances and autoimmune issues I’ve developed. But doctors don’t care, they just want their paycheque. What angers me is I wasn’t even warned about these known side effects in advance. I didn’t even make an informed decision to have this treatment.
A lesser issue is that I have bad eczema (so bad it gets really infected and I’ve ended up in hospital countless times because of the infections) and the eczema cream that works for me seems to be no longer available. The pharmacist hasn’t been able to get it in months. And usually they tell you when they can’t get something and offer that part of the prescription back so you can try to get it elsewhere. This time they didn’t even bother mentioning that they couldn’t get it again, or give the script back. Just opened the bag to find it wasn’t there again.
It’s always the same, isn’t it. I hope you can get the brand you “get along with”, or possibly find one that doesn’t mess with you at all.
And making informed decisions is so essential but seemingly never really possible with what doctors refuse to tell you or just “forget” or leave out. It’s insane to think we live in a world where these side effects are known but disregarded when people need to be informed.
When I was diagnosed with thyroid cancer, it was actually a relief rather than devastation because I had known there was something seriously wrong with me for a long time but no-one had been taking me seriously. So I didn’t do the typical thing of breaking down crying. I felt no emotion at all other than relief that i finally knew what was wrong with me. And rage that i had been dismissed for so long. And because I had been ill for so long, I didn’t even care about living any more. So I wasn’t like the people you see on TV who get diagnosed with cancer and are so desperate to be saved they will try anything, accept any treatment. So I wonder if the doctor left out the side effects because he thought I might not accept any treatment and just accept death if I knew how bad the treatment would be? Still should have been my choice though.
Someone came through with the rest of the money for the car repairs! My tendon is worsening, but I’m going to try wearing shoes tomorrow and see if my feet have healed up enough to tolerate them.
really happy to hear that
i hope the discussion around the mutual aid comm isn’t stressing you out :/
It is a bit. Some of the proposed rule changes seem like they will make it more difficult to get help.
yea, i don’t really use it but it just seems like… uh bootstraps brainworms? like you got this much money so you should be fine? idk its rly weird
What provoked this whole thing anyway?
As far as I can tell allthetimesivedied made a meta post about another user. I’m not entirely sure what happened between that post and the pinned one, guessing some back room discussion among mods and admins.
i have 0 idea
Feeling very isolated presently. My IRL friends are always on the other end of a phone; there’s hardly any time to see them in-person. And sometimes we go a long time without texting. My brain is too much of a mess to go out and meet people. I’m almost always afraid if not straight up paranoid, so it’s hard to establish connections with people. I got into ham radio, but it’s hard to bring myself to talk over the radio, and the things that interest me more like packet radio and radio BBSes and such are dead as no one does that anymore. Try to go online to find people who do it, and I’m met with “just use the internet.” I don’t like online games usually because people can be super toxic, and I’m too soft to handle that usually. Even on here I get nervous and disappear for weeks or longer, and nobody’s even been mean to me on here.
CW: medical mistreatment, rectal surgery, medical abuse
So I had my surgery today for my hemorrhoids. Apparently, as I learned on my way out of the hospital, they were a lot bigger than I or my doctors thought. They were removed completely, and my ass has to be left open to heal during use. The pain is worse than anything I have ever felt in my life, and I probably have endometriosis. Pain killers have little to no effect, I’m lying on the ground at home and can’t eat or drink apart from some water. I wanna die, plain and simple. And this is the good news.
I am, bc of a genetic disposition, very tolerant of pain killers and anesthetics of any sort. I mentioned that multiple times before they put me under. Couple of minutes later I wake up again, a breathing tube already down my throat, and everybody getting ready. I grunt, as I am unable to speak with a tube lodged firmly in my mouth, and the specialist looks at me to say “You shouldn’t be awake.” I grunt again what I hope will sound like an “I know”. Doctor Obvious goes about upping the dosage and I’m passed out again.
Then suddenly, I wake up again and notice the light of the surgical floor directly above me, as I’m being pushed out of the operating room. The nurse notices and tells Doctor Obvious “She’s awake again.” And Doctor Obvious is like “That fast?” and I chime in “Yeah, I don’t think I should be awake yet.”
They bring me to the wakeup room and the slightly burning sensation in my bum rapidly evolves into searing pain. I tell the nurse there, and she gives me a second shot of painkillers. They don’t work. I tell her again, and she’s like “But it’s all in, it should be working by now.” And I say “Well it isn’t.”
In walks my savior, another nurse, who snaps at the one treating me, “That woman has a genetic condition that makes her metabolism work through pain killers faster, she needs at least double the dosage,” which she promptly got me. She cheered me up a bit, helped me dress and was overall just a kind human being. We were even cracking jokes at some point, so much so that all other patients were giggling as well while they were waking up. I like to think they had a nicer time waking up.
Then my doctor who did the operation showed up to do one last check before discharging me. Turns out, the bleeding hadn’t stopped and she needed to do something about it. She and the nurse were prepping me for a short “fix” to the issue and the doctor tells me, “It’s gonna sting now” and she goes ahead and rams a 5cm needle directly into my bleeding, open-wound rectum. I screamed, I cried, you can imagine the rest.
The nurses tried to console me, I shoved them away, even kicked at them while screaming. There was no painkiller, no local anesthetic, nothing. I refused to talk to the doctor afterwards, just kept yelling that I want out. They discharged me, eventually, but not after asking me to stay over night. Doctor finally realized that I didn’t trust her at all anymore, and she suggested I go home and lie down on the sofa to relax. My parting words were “I don’t have a sofa”, and then I walked out.
Final words with the kind nurse who showed me out, “This type of thing should only be done with an anesthetic, I do not understand why the doctor did this.”
I’m considering sueing the hospital at this point, but that really depends on if I can survive this pain and not go mad from it.
oh god, im so sorry that happened
Thanks for the hug friend. I can barely type with the pain, but thank you
6·3 months agoIn walks my savior, another nurse
Holy shit. When basic stuff makes you seem like a saint. Shit is wrong with the entire system.
Really sorry that happened. Hope the recovery is fast
Thank you, I hope so too but I’m really scared of taking a shit tho lol
And yes, the system is completely broken. I’m just glad she was there and someone did the basic stuff.
Update: I had to be operated again today, I’ll spare you thr details but I really feel like shit.
I am out now, not doing too hot but doing okay. Thanks for sticking with me comrades
autism, loneliness, negativity
Really getting to me tonight the way other people can form friendships and bonds. In a way that I seemingly can’t or is a lot harder. I blame autism for a lot of it. I try and just don’t seem to get as far. Maybe I need to try more. I don’t really know how. At least I’m usually more comfortable being alone then most people are because that’s probably going to continue being a theme.
I just wish I didn’t feel so alone. I want- something I do not have. Time to go forget.
I started seeking out other people with autism to befriend (online as i can’t leave home much), and it’s a lot easier for me. And also acting generally pushy and outgoing
Though now I have the problem of putting up with shit I really shouldn’t too much
I smoked the weed that lets your ADHD disappear and allows you to spend an hour and a half cleaning the house. Hell yeah
which weed is that?
Whatever cheap stuff my friend bought off of a guy who offered her a threesome, I don’t know what the strain is called. I will say I don’t recommend it because every other time I’ve smoked it I got really paranoid and couldn’t function for an hohr
ah darn, thought there was weed that I might actually enjoy
My landlady’s car needs new brake pads and discs. Quoted at £400 and neither of us have any money. It’s undrivable. With the mobility issues from my stroke, the fact that I’m still recovering from foot surgery, inflamed tendon and the fact that the nearest bus stop is over half a mile away anyway, I am now literally trapped indoors until we can raise the money for the car repairs. I thought my life sucked before, but now I am an actual prisoner, can’t even get to medical appointments, landlady can’t go and buy food or pick up our prescriptions. Just when I think things can’t get much worse, they do. I hate being disabled!
I’m so sorry that things only seem to get worse :/ I really hope that someone is able to come through with the money
Thank you.
One of my classmates had both her first patients die on her leading up to her exam in patient care. She’s swinging between a mental health crisis and condemning nursing as a profession (Because of the nurses she was working with). Don’t know how to help her. So I’m just letting her vent, probably gonna invite her for ice cream after her exam
Well, someone here helped me to join dignitas. Finally dignitas spoke to me about discounts (they won’t discuss potential assisted suicide unless you’re a member) and… it’s not going to work for me. The thing is, it turns out they do give big discounts to people on low incomes, you provide your proof and if you have no income/no disposable income they say they will even do it totally for free. The problem with that is you have to pay for your own travel and accommodations.
You have to travel to Switzerland for multiple interviews with doctors who will decide whether to help you or not. So the costs for this would be: taxi to train station, train to airport (potentially very expensive), airport shuttle bus, plane ticket, transport from Swiss airport, hotels, food etc. And depending how far apart your interviews are, you might need to stay in Switzerland for a while, and it’s an expensive country. Depending on how long you have to wait between being accepted and doing the deed, you might need to go back home and return to Switzerland for the actual suicide, meaning paying all these costs again. If you stay in Switzerland while you wait, you then have to pay hotels, food and whatever for that whole time. Dignitas don’t pay for this, you have to pay yourself. But with what income?
If you have enough money to pay for all this then you have too much for a free suicide, surely? In which case you have to pay the £15K cost of the suicide yourself. So yeah, it won’t be happening for me unless some miracle happens in the future and I come into a lot of money. I’ll have to struggle on for the foreseeable future.
Oh friend, I’m so heartbroken to read this. The fact that it hinges on the travel costs is absurd, at the same time, I really don’t want anyone to have to consider this option. I get it, I really do, but the thought of someone being in such a bad place that death seems the only bearable option is terrifying. I know you’re doing all you can, I know that the help you get is not enough, but it still scares me to think that you would… leave.
I will not tell you what to do, and since the travel cost is so expensive, there’s literally nothing to do but suffer on rn regardless. I’m so sorry it is this way, and I wish I could give you a hug and find a way to make it better.
Having you as a friend does make it a bit better.
.I never expected it to come together really, I mean I had no idea Dignitas even offer a totally free service. I had heard they do discounts but I thought it would be something like 20% off, so out of reach anyway. I was so surprised to be told they could do it free, but then they added at the end of the message that the entire travel costs and hotels would be on me, they don’t help with that. If only I could get my benefits awarded for the full maximum 10 years, I could maybe save a bit, but in that case I might have to pay the full cost and I don’t think I could save that much. Life is just a neverending obstacle course, there is always something in the way.
And my achilles tendon is getting worse, not better and I’m really trapped by it and worried about how long it will take to improve. Because of my leg and foot issues I’ve been basically imprisoned for months and into the foreseeable future, it’s really not helpful to my mental health.
I’m happy to hear that, I just wish it was more than emotional support I could give
It’s amazing they would offer this service for free at all, I didn’t think that was possible either. Saving something off of your potential benefit payments to be able to travel there sounds risky, but if you think it could work… I don’t want to encourage or discourage you from trying, as this is ultimately your decision and your life, and none of my business. But I do hope you find a solution that is best for you.
The tendon issue is just another headache. I don’t know about how flexible/mobile you are in general, or especially after the stroke, but is there maybe some careful mobility exercises where you don’t have to put your full weight on your leg while using it? I’m asking because there’s some yoga exercises that helped me with tendon tightness. Given that your issue doesn’t just have one root cause, however, take this suggestion with as many grains of salt as necessary.
From reading the dignitas site, it seems like a vocation for them rather than a business. They really believe in people having the ability to access this service. In fact I think by law they aren’t allowed to profit from assisted suicide and can only take payments that cover their costs. The person at the top apparently uses his own money to make up shortfalls. But i guess expecting him to pay all the travel expenses too would be unviable.
I saw the podiatrist about the tendon a few days ago and they gave me an exercise to do, and told me to massage it, and an orthotic. They said if it is not better in two months, go back. But it still seems to be getting rapidly worse. I wish so much i was able bodied.
I’m still doing my exercises and today when massaging my sore bicep I actually felt some muscle growth
More like blockoswole
The day before my final undergrad exam ever is a very bad time for my brain to kick into extreme executive dysfunction . And yet here we are. My energy level is so messed up, I keep going between to lethargic to move and too energetic to sit still
Worked all evening to finish a deadline and now my body is completely giving up on me. It feels like my skull is trying to leave my head. I’m proud of my assignment though, probably one of my best works ever.
Sorry you don’t feel good but well done for getting your assignment done.
Thanks :)
