DisabledAceSocialist @ DisabledAceSocialist @lemmygrad.ml

Partially sighted stroke and cancer patient, learning to walk again, going

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5 mo. ago

If they won't write letters for your claim, can't you try telling them something like: Since you won't help me go on disability and I can't afford to survive without a source of income, you are leaving me no choice but to stop taking the medication so I can keep on working?

Oh sorry to hear that. Do you have anyone who can accompany you?

This bit " Are we doing everything to make sure people in the city know how to access this critical care?" particularly pisses me off. He's implying that it's the family's own fault that this happened, that there is all the help needed out there, the family just didn't access it. Never mind that they'd asked the authorities for help twice and didn't receive any.

It reminds me of in the UK whenever a disabled person has their benefits stopped and starves to death, the news reports are always full of victim blaming, saying that there's so much help out there, the disabled person just didn't access it. When, actually I know from experience, there is nowhere enough help and whatever authorities you contact just refer you back and forth to each other.

It seems most countries just have the appearance of help in place so that people who are doing alright can sleep at night, imagining that there is help available for the less fortunate, when there really isn't.

It's absolutely falling apart. Then again, the whole country is.

Sorry to hear that. I'm in a similar situation. But we are here for you and you can have us as your social outlet. Are you able to walk outside at all?

For example he recommended a nausea medication but I looked into it and you shouldn’t take it for more than 5 days because it can cause irreversible motor damage lmao.

This, unfortunately, is what it is to be on meds. You take one for your medical condition, but that one causes side effects, so you take another med to deal with the side effects. Then that med causes side effects, so you take another to deal with those side effects. Before you know it you're on so many meds you need help keeping track of them. It's a ridiculous way to live. And the doctors don't care because it isn't them living like this.

There are very few professions I have less respect for than the medical profession. It took them three and a half years to diagnose my cancer because they refused to do any tests. They said I was "too young for it to be anything serious." They accused me of being a hypochondriac, suggested I must be depressed, or have chronic fatigue syndrome. Anything other than do their jobs and find out what was wrong. I suffered immensely that entire time, so badly I tried to commit suicide. And then they treated me like an attention seeker. Now they know I'm seriously ill and disabled but still very few of them do what they can to help me keep a roof over my head, or stay fed. Truly awful people.

I'm probably the comrade who advised you that would happen. Yep, this happens to me, every time. Only the GP and mental health practitioners will write sicknotes and letters for benefit claims. None of the others I see - endocrinologist, neurologist, oncologist, stroke clinic, will do it. They all say "That's not our job, we don't do that."

Once, after much pleading, I managed to persuade the physiotherapist to write one for me. But he didn't want to do it, and made sure the note he wrote was useless.

My evil ex-therapist, who I've written about before - wrote me a good letter for my benefit appeal. But then months later when I no longer wanted to attend her sessions she got angry (I'm assuming because she doesn't get paid for the sessions I don't attend) and said she would inform the benefits people that I haven't been going to the sessions (because my attendance at her sessions, plus the letter she wrote, would help me win my appeal). I pointed out that I already have to beg for food while I wait for the outcome of my appeal, and if I lose the appeal altogether, then I'll have no hope. I'll become homeless, and commit suicide. She did not care at all. She said "if that happens, I'll give you a phone number for a homeless shelter."

I'm a partially sighted cancer and stroke patient undergoing months of multiple foot surgeries. It's the middle of a very cold winter and I can't wear shoes. Can you imagine being homeless and probably moved around from shelter to shelter - if they even have any beds available - carrying my belongings from place to place in this condition? She did not care at all. it didn't affect her so she didn't care what happened to me. Just like she didn't care that i can't afford food now, and when I told her about this site and how people donate food vouchers to me, she was appalled and contemptuous about me begging strangers for food and told me to "Stop doing that." OK I'll just starve then.

These medical professionals do not care about us. They only care about their paycheque. It would take them 5 minutes to type and print a quick note about our conditions, and that would make it easier for us to stay fed and housed. But no, they are too mighty and important to concern themselves with the homelessness and starvation of the proles. Most of these specialists earn around £100K, or even more, a year. Live in nice houses, have foreign holidays, send their kids to private school. What do they care if you or I are on the street or in a homeless shelter, hungry and freezing? It doesn't affect them.

So just mention a few friends on here and just don't mention they're online.

We can be your online support group. But what proof do you need to give the doctor? Do they need to meet your friends/see photos of you with them? Or is just telling the doctor about them enough?

OK thanks. I'll send it as it is.

Which country are you in? In my experience, (in the UK) specialists like haematologists refuse to get involved in benefit claims, they say it's your GP's responsibility to deal with that. But maybe it's different where you are.

Oh, I forgot. Should I mention that the reason I'm writing this in a letter is because it's impossible to get a GP appointment now (the receptionist always turns me away, sometimes saying they have no appointments, or trying to fob me off by telling me to go and see a chemist for a prescription instead. You can now only get practise nurse appointments.) Or would that seem too complaining/combative/passive aggressive?

Oh yeah, I definitely need to give it a read through first, thanks. I think I'll drop it off on Thursday since I have to go there for a dressing change. Thanks so much for all your help, I really appreciate it. I will let you know if I get a response this time.

So sorry this happened to you. IME finally accepting that you're disabled for life and that you can't do the things you used to any more, isn't the hard part. The hard part is how society treats you for being disabled, unemployed, a burden to society, etc. What country are you in? Some of us here might be able to give you tips and support with the disability benefit process and whatever other help you might need.

Dear Dr R,

I have noticed that lately I have been prescribed only half the amount of Dermol 500 cream and e45 eczema repair cream I used to receive. I was previously prescribed two bottles of each a month but now receive only one. I would like to ask that my future prescriptions are for two bottles each rather than just one. I need to use Dermol 500 as a soap substitute daily over my entire body, followed by e45 eczema repair cream as a mosituriser and one bottle simply doesn’t last for a month. Prior to being prescribed these items, I was using ordinary soaps and body washes, and it aggravated my eczema to the point that I had open sores that regularly got infected. This resulted in frequent trips to both hospital and the GP surgery and regular treatment with both antibiotic tablets and topical antibiotics. Since switching to these items, the eczema has remained in remission and I have not had any skin infections from it nor needed antibiotic treatment for it.

I have also previously written to the surgery about my rimegapant prescription, but they have not responded. Previously I was taking rizatriptan for migraines, but since I had a stroke, the neurologist prescribed rimegapant because rizatriptan is contraindicated in stroke patients. I have tried all the other migraine treatments including nerve blocking injections in my head, none of which worked. Rimegapant, along with topiramate, are now the only things I can take that give any relief, and rimegapant can be taken daily as a preventative. The GP won’t prescribe more than 8 tablets per month, which is insufficient for use as a daily preventative. Migraine with aura, which I suffer from, doubles the risk of stroke, and as I have had one stroke already I would like to do everything possible to prevent another. The neurologist originally prescribed 8 tablets for me to try to see if they worked, but said I can increase them to daily if they help. They do work for me by ending a migraine, but as I don’t receive enough to take daily I still get migraines. Would you please therefore increase the number of rimegapant tablets I am prescribed?

I also previously wrote to the surgery about my topiramate prescription but have not received they have not responded. I received a letter saying that all female patients taking this medication must take birth control too, as topiramate can cause birth defects. However, I am not sexually active nor have any intentions to be, and I also appear to be going through the menopause. I do not need birth control and am unwilling to take it under any circumstances. I acknowledge the risks to the hypothetical unborn child that the NHS is prioritising above me. Please confirm that I will continue to receive my topiramate prescription.

Thanks for the advice, I will rewrite and repost tomorrow. The risks to the hypothetical baby are a doubled risk of autism and ADHD. It seems mad to me to make me suffer without migraine meds, or force me to take an unwanted drug, so that a baby who will never be conceived won't have ADHD. I'm not sure how to phrase that though.

I'm biologically female, and I've had the same issue. I once had an elderly male acquaintance start loudly discussing my sexuality in a crowded cafe, announcing to the room that I must be a lesbian since I didn't have a romantic partner. He went on and on about it until everyone in the cafe was looking at me and laughing.

Thanks. if you're getting extra symptoms like aura, then it's migraine you're having. You can even get a migraine without a headache at all, sometimes I just get the aura without the pain. You might want to see if you can try something like rizatriptan or rimegapant, as I believe taking opiates can make headaches and migraines worse if used too much.

Thank you for the offer but I'm on so many meds already with so many side effects i don't want to take another one. It's one of the reasons I don't want to be put on birth control.