DisabledAceSocialist

joined 5 months ago

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.

[–] DisabledAceSocialist@lemmygrad.ml 3 points 1 week ago (2 children)

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.

[–] DisabledAceSocialist@lemmygrad.ml 10 points 1 week ago (2 children)

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.

[–] DisabledAceSocialist@lemmygrad.ml 3 points 1 week ago (5 children)

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.

[–] DisabledAceSocialist@lemmygrad.ml 3 points 1 week ago (7 children)

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.

[–] DisabledAceSocialist@lemmygrad.ml 16 points 1 week ago (2 children)

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.

[–] DisabledAceSocialist@lemmygrad.ml 2 points 1 week ago (3 children)

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.

[–] DisabledAceSocialist@lemmygrad.ml 5 points 1 week ago (14 children)

How about something like:

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 am unsure whether this is an oversight or intentional. 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 antibiotic creams. 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 have received no response. 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. However as the GP surgery won't prescribe more than 8 tablets a month, I am unable to take it daily as a preventative, and so still suffer migraines. 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 usually 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 any response. 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. Please confirm that i will continue to receive my topiramate prescription.

OK thanks. I'll try writing up the draft tomorrow with only discussion about my health outcomes.

He knows I don't have any income at the moment, but thanks for the idea, I'll keep it in mind and maybe use this if my benefits get sorted.

 

I am so exhausted by how difficult it is to get medical treatment in the UK when needed. I recently had foot surgery, at the moment I'm having my surgical dressings changed by the practice nurse twice a week. She cleans the wounds, puts an iodine patch on to help clear the infection, and redresses them. While the treatment is free on the NHS, the dressings aren't, I have to pay for those. So much for the NHS being "free at the point of delivery." I had to buy a box to take home too, for when the wounds are no longer so bad and I start to change them myself at home.

My next appointment for a dressing change is on Thursday but today one of the dressings came off. The wound it was covering is deep, oozing blood and orange/yellow fluid, and was totally exposed. I called the GP surgery and explained the situation and asked for a sooner appointment to get it changed. They said there are no appointments and the nurse is too busy to see me, I'll have to phone in the morning and see if I can get one. Appointments are released at 8.30am, but they all get snapped up at once. So many people need an appointment that at 8.30 everyone starts phoning or turning up in person and always, by the time I get through, they're all gone. The only reason I have the twice weekly appointments I do is because they're post-surgical appointments that were booked in advance. So I'll try but I know there's a 0.0001% chance of me being able to get an appointment sooner than Thursday.

So, I dressed the wound myself with one from the pack I had to buy. I don't have iodine patches to put on it, and I can't do it in a 100% sterile way like the nurse can. The surgical wounds already got so infected that about 9 days ago I ended up having to go to the emergency department (because, again, only way to get seen as the GP practice said they had no appointments and wouldn't squeeze me in.) I'm worried it'll get infected again now, and the dressing I've done isn't very comfortable, I'm worried it might be too tight but I had to wrap micropore around it to hold it in place.

It makes me so angry when I see British people bragging to Americans and other nationalities about the NHS. It's shit. Almost impossible to get an appointment and having to pay for your own damn bandages. And all the cost-saving measures they make only end up costing more in the long run.

2
Poem (lemmygrad.ml)
submitted 2 weeks ago* (last edited 2 weeks ago) by DisabledAceSocialist@lemmygrad.ml to c/quotes@lemmygrad.ml
 

They hang the man and flog the woman

Who steals the goose from off the common

But let the greater villain loose

Who steals the common from the goose.

 

Life is just becoming untenable. It's bad enough being ill and disabled, dealing with chronic pain, endless hospital appointments, multiple surgeries and seeing my life slip down the drain because I'm not well enough to do anything worthwhile. But I could live with this. What I can't cope with any more is poverty.

It's one thing going through benefit appeals. OK my money gets stopped for months during the appeal, and I rack up debt and have to beg for food on here. It's hard because I usually get ignored on mutual aid so had to start asking for help on here, and I'm always worried that people on here will stop responding too. So living with constant threat of hunger too. Having to eke out each morsel of food carefully. But I could live with that for a while until my benefits get sorted, since it's temporary.

But now the government say they are cutting disability benefits drastically, to the point I will not be able to live on them, AND they're making it virtually impossible to claim them AND they're forcing claimants into work placements. Multiple doctors have written me letters of support saying I'm totally unfit for any type of work whatsoever, and need help with basic daily things. Yet I still got 0 points on my last assessment. So there is no way the DWP will take the doctor's word for it that I can't work when these new rules come in (and the government say they're being implemented in 54 days.) I know I can't work any more, it's not even a debate.

On top of cancer treatment and a stroke, I'm currently recovering from my last foot surgery. I can't even wear shoes right now, and they said the recovery could take up to 4 months to be complete. I need another foot surgery and I've been given the date - 24th April. That's three months from now. That means just as I recover from this surgery I'll be having another one and have to go through the whole thing again. And this recovery has been horrible - as well as being unable to wear shoes I ended up in A&E when my surgical wounds got infected and it's still infected. I have to get the dressings changed by the nurse multiple times a week and pay for my own bandages because the NHS don't pay for that! I got the money for the bandages by begging on here. And that alone puts me at risk of getting in trouble with the DWP. AND I have to constantly fight to keep my meds as they're always trying to stop or reduce them on cost grounds, never on medical grounds.

I just feel that this latest news about disability benefits is the final straw. When this is implemented I don't see any way out but suicide. I am scared of course, I tried once before and just ended up in intensive care for 5 days. I'm worried about making another mess of it. This sick world does everything it can to make the most reliable and painless suicide methods unavailable, while making people's lives more unbearable so they want to die, but can't.

I'm thinking my only real option is drowning. I live right by the sea and have some diazapam tablets, maybe I can take enough to knock myself out so the drowning won't be so bad. I should stress I am planning to do this in several months when the financial situation becomes clear, not right now so I don't want any do-gooders phoning the police on me or any shit. I am only writing this so if the time comes people will know I did this purely for financial reasons, because the government have bullied me to the point of having no other way out.

I will not accept being out on the street, or moved from shelter to shelter. In fact I asked my shitty therapist about sheltered accommodation, you know what she said? She said you have to pay to live there, it's not free. I said so what about when I'm not in receipt of benefits, such as during appeals? She said then I'd be evicted. There is no security or safety, anywhere.

I am tired of this. The immense stress of benefit assessments and appeals is bad enough, but this new government have taken away all hope of a survivable future. It's already exhausting and stressful begging for food and never knowing whether I will get a response or not, but this new situation means the end of all hope and a life of permanent destitution and homelessness.

 

This pisses me off intensely. We're treated like burdens when we need help - "Can't work? Fuck you, you leech, we're stopping your benefits." Need medical treatment? I've had multiple medical professionals complain to me about how much my meds cost the country and try to stop giving them to me - not on medical grounds but purely on cost grounds.

But can we be allowed to die peacefully with dignity? NO! The only deaths we're allowed are starving to death like Mark Wood and Errol Graham, who starved to death after their disability benefits were stopped, DIY suicide like Jodey Whiting, who killed herself in despair after her benefits were stopped, or die of exposure after becoming homeless like Richard O'Brien and Ian Roberts. And many, many others.

The state treats me like such a burden I have to beg strangers for food. So politicians need to stop pretending they care or that they don't see us as a burden.

 

Two evil fascists like each other. What a shocker!

 

Two evil fascists like each other. What a shocker!

 

I hate the way they don't mention the fact that a huge chunk of the benefits bill is pensions. They try to make out it's all lazy people not working.

 

Sainsburys is closing its cafes and hot food counters to save money, meaning 3000 people will lose their jobs, while Sainsburys made a profit of £277 million last year and paid its two top bosses £7 million between them.

 

It's been shown that cutting disability benefits will move hardly anyone into work - it will just result in the disabled being unable to afford what they need.

Studies show that over half of disabled people in the UK already go without essentials, as they can't afford them on the pittance they're paid. Yet the government threatens to cut the disability benefit by half to save money. And make it more difficult than it already is to claim benefits. Now of course this will result in suicides and death by starvation and exposure, which the government doesn't care about. But it will also lead to increased crime - shoplifting, dealing in drugs/stolen goods/black market stuff, etc, just to survive. Such a stupid and short sighted policy.

Make no mistake - this isn't really about saving money, it's purely ideological. They don't want to pay for useless eaters to live, plain and simple.

 

It's been shown that cutting disability benefits will move hardly anyone into work - it will just result in the disabled being unable to afford what they need.

Studies show that over half of disabled people in the UK already go without essentials, as they can't afford them on the pittance they're paid. Yet the government threatens to cut the disability benefit by half to save money. And make it more difficult than it already is to claim benefits. Now of course this will result in suicides and death by starvation and exposure, which the government doesn't care about. But it will also lead to increased crime - shoplifting, dealing in drugs/stolen goods/black market stuff, etc, just to survive. Such a stupid and short sighted policy.

Make no mistake - this isn't really about saving money, it's purely ideological. They don't want to pay for useless eaters to live, plain and simple.

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