I have been treated so inhumanely that I can't take any more. I am planning hunger strike in February. Beauty of a hunger strike is that it is a constitutionally protected form of protest. Can't be forced into any hypocritical mental health treatment. Designed to not help anyone. No where to go for help around here. I need to die before I run out of meds
Probably going to die: I have been treated so... - Pain Concern
Probably going to die
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Dale8
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Dale8....please don't do that. We're here to help. I know EXACTLY how you feel. I don't know your pain, but I know I've been living in hell for months and been to everyone and done everything and still am no where. Please don't go on a hunger strike. Talk to us. I'm in the US also. I'm here if you want to talk.
Thanks for the concern. I am crippled and in constant pain. Extraordinary pain. I have a super human pain tolerance to begin with. That doesn't mean I like it. That doesn't mean I should have to tolerate it. The current opiaphobic climate is just going to make things worse. I am going to hunger strike. Have tried everything else. Disabled are supposed to die. Unwritten, unspoken policy. Wouldn't be politically correct to admit it. But the medical industrial complex has made it crystal clear to me.
Unbelievable! My mom is 44 and in a wheelchair and disabled! And you put disabled are supposed to die!?? We just got her over the depression from her disability and you put that on there?? That was a sick thing to put! I think you need professional help and should go to the hospital and tell them you want to die! I am cutting my mom off from this site because of your writings! That was really dumb and rude!! You can ask for help! But some of your comments are just sick and irrashinal! Please phone the suicide hotline? There actually really good people to talk to . But please don't post comments like that anymore?
I don't know if it's worth replying. I don't say that as my belief. Rather the message conveyed to me by the larger able-bodied community. I did not know when first disabled that I had become a member of a despised minority group. Too many able-bodied feel we are a worthless drain on the economy and as such don't deserve to live. A lot of them don't mind letting you know that is how they feel. I know this attitude is present in UK as well as I have read a lot of things where people in UK have opined on this. I thought that was quite clear that I was talking about a too common attitude that makes our lives harder and not expressing my own beliefs or morality. Sorry if you didn't get the sarcasm.
in reply to Dale8
Dale there is a time and a place this is not it that time or place. There are many here who suffer with intense constant pain depression and anxiety myself included and you need to understand that when you post stuff like that how it can affect others.
Saying disabled people should die? Seriously man you need to go and get professional help, do your hunger strike and take your body to that place if you must but I don't agree that you advertise the fact here with a LOT of vulnerable people some of which are very young and in need of help understanding and support.
Shame on you
I disagree with your opinion of the UK, Dale8. I live in the UK and the able-bodied community has never made me feel "despised" or that I "don't deserve to live". Society's scroungers have made the benefits system hard to access for those of us who are genuinely disabled, and the government is obsessed with cutting expenditure in all areas, but able-bodied people are overwhelmingly decent and have never suggested that I am a "worthless drain on the economy". Indeed, I find able-bodied Brits to be supportive and sympathetic.
I wasn't talking about UK mainly. I know your system is way more decent than ours. But have read writings from people from many countries who have encountered these attitudes. Definitely exists here. I am mainly speaking from my own personal experiences and the difference in the way I have been treated since I became disabled.
societies scroungers as you put it. is not the reason its hard to get benefits there are many military soldiers left without limbs who cant get benefits. Despite disabled people spending an average of £550 ($775) a month on disability-related costs, they are still treated as an economic inconvenience by the government. Around half of disabled people say they have struggled to pay bills because of the extra costs they face, and one in 10 people have turned to a cash or pay day loan.
"I'm a diabetic and have had to purchase blood glucose monitors and test strips. Other conditions mean I am also regularly purchasing disposable gloves, aprons and disinfectant," Turner-Smith says. "Breathing equipment costs £700 and my air flow mattress uses a lot of electricity. My bills are astronomical, with electricity costing over £200 per month and water £75 per month."
The cuts to PIP come alongside several reforms which have impacted disabled people. Cuts to council adult social care budgets – which have been slashed by more than £4.6bn since 2009/2010 – mean more people with long-term conditions will be forced to shoulder the cost of their care.
Two weeks ago, it was announced that cuts to Employment Support Allowance (ESA) will see claimants lose £30 a week if they are judged to be disabled but fit enough for "work-related activity". A number of high-profile Conservative MPs voted in support of slashing ESA – even those who are patrons for disability charities.
"In the past week, the government has confirmed cutting disability unemployment benefits and announced changes that will make it harder for some disabled people to qualify for the Personal Independence Payment," says Mark Atkinson, chief executive of the disability charity Scope.
"At the same time it has also announced that it is considering a longer-term review of disability benefits. With the chancellor stating he is looking to find further spending cuts, disabled people have been anxiously awaiting the budget." and this is just the start.
Similar problems here. Everything changed. Nov.8. These two states(California, Nevada) both legalized recreational marijuana. Expecting great influx of people relocating here. Landlords, hotels, rooming houses etc. all jacking up rents and rates dramatically and the amount I get monthly from social security has actually gone down.
I agree with you on this, I live in the UK and able bodied people go out of their way to lend a hand.
i live in the UK and the only thing people disabled are mad about is the welfare state, i don't know any disable people who are not happy with their lives and i don't know where you get the idea that people in this country have a problem with disability, i have heard of none.
in reply to Sherish
I agree wholeheartedly with your words here. Well said
Hi there, can you at least tell us what you would like to achieve? if you had the help you need instead of this inhumane treatment you have suffered where would you be? I would really like to know.
Blessings
Are you meaning help in terms of medicine?, or shelter? or help to care for yourself?
All of the above. But forget about it in a Darwinian capitalist system that has no use for disabled people.
I was in the same position, lost my job, my home, custody of my son, ability to drive, ability to walk and living under a bridge. I felt like you, i slowly managed to turn it round over 1 months and whilst my disease and disability have got worse my "situation" has been ok for 4 years now. I dont know anything about how systems work in the U.S but i hope some can point you in the right direction and give you some constructive guidance.
Blessings.
Very short and to the point post but you give us nothing to work with.
Are yiu in pain? Long tern chronic pain? On neds? Or what.
Yes of course we are here to help and support but hard if you don't tell us why.
x
I am crippled for life and in constant pain. What else do you need to know. I have a condition that is not that common. The only other person I know of with the same diagnosis was Art Buchwald. Ironically at the same time. I was in hospital reading about Art Buchwald going through the same thing. He had the same reaction I did. Just let me die. They brow beat me into agreeing to dyalisis. Art didn't do the dyalisis and ended up getting leg amputated and then died. The damage never heals and is a whole different level of pain. And now they want to cut off pain meds. No thanks. Death for me, thank you
OK fair enough but on this forum we are not qualified to deal with someone wanting to take their own life.
We can offer support, advice and a shoulder to lean on as many here have lost limbs through chronic pain and still very much with us.
I live in Spain and our treatment of chronically sick people is very different from the US. but we still have the same amount of care and compassion. I realise evrything with you is done with paying and insurance.
Do you have any family or friends who will help you? Someone close who will listen? With your very rare condition is there a support group? I don''t know what to suggest. Yes of course you are angry. I am blind, lost my sight over 30 years ago when I had young children and a Military husband. I was angry. Why me? But I soon realised no one was going to do things for me. I took the bull by the horn and met life's challenges head on. Recently moved out here from the UK with my now
severely disabled husband...he broke his back whilst serving with the Royal Navy. . Lfe is hard - damned hard at times but we would change nothing.
If you want to chat then I am happy to listen. As a Military wife there isn't much I haven't seen or experienced. It makes me what I am
x
But I soon realised no one was going to do things for me. I took the bull by the horn and met life's challenges head on. this is why he is going on a huger strike.
in reply to romana1
romana1
Food for thought. What is a Hunger Stoke going to accomplish? Dale8 is asking how to get media attention. There are other resources do do this effectively. This would end up being a bunch of people just "perking" in for a moment and off they go. Probably someone would just call the police. If Dale8 thinks Broadcasters are going to send a crew out with what's already consuming our television screens, I don't think he will get the attention we all need and that is help with managing our pain with opiod medications. The cry for help here is abit louder and I'm sorry to say here, with a wrong tone added. I pray and wish from the pits of my gut that Dale8 gets the Adequate Pain Relief We All Need. It seems to be in short supply for many of us. My pain wouldn't allow me to even go outdoors to support anything close to this.
Pain to the extent of Intractable Pain is really, really under treated for many of us. Our pets get better pain relief from our Veterinarians. Wouldn't you agree.
I'm not trying to be rude. But they or anybody won't care if you go on a hunger strike. They will just say. Oh well if that's what he wants to do? Let him!!
You are probably right, but I have been treated so aggregeously unfair and inhumane. Beyond inhumane. Beyond unjust. How else can I protest this? Thousands are not coming out to protest with me. And I truly would rather die than go through this again. Went through it in 2013. Condition worse now. My car was running then. Not now. So this time will even be worse.
can you tell us what time of inhumane treatment you have had? and what is your disability? that will really help us to help you better or support you better
That sounds excruciating Dale8. I am sorry you are going through this.
Art Buckwald had stopped dialysis for renal failure due to diabetes, is that what you have as you don't tell us?
I am not diabetic. Diabetes is not a prerequisite for kidney failure. I am talking about kidney failure with(I'm not sure on the spelling) rhabdomyolysis. That's what causes the permanent damage to my legs and feet and nervous system. And to the guy from Spain. We don't have care and compassion on the west coast of the USA
in reply to Dale8
Dale8
Rabdomyalisis is a very serious condition. It is a Neuromuscular Decease which requires a Neuromuscular Specialist. Dale8 have you seen a Neuromuscular Specialist?
If not, you need to. The quicker the better.
Dale8 if you have been Diagnosed with this it will be in your Medical Charts.
Whom ever Diagnosed this has this information. Was it indeed a Neuromuscular Specialist? Specialists of this nature are often not in "Regular Hospitals" but they are in "Teaching Hospitals". Your Blood Results will show extremely high Creatine Counts. If you get with a Neuromuscular Specialist you should be able to get adequate Pain Relief. Many Physicians will know about it but don't know how to treat it. DO you use a Pharmacy Regularly.? If you do, call your Pharmasist. They are the ones who know how this is usually treated. The Pharmasist may print out medications used to help people like you who have Rabdomyalisis.
You may be are treated very in humanely because a "common" cause of this can be from serious Alcoholism.
Both Physicians and Nurses often will not want to take the time out to help you because of "attitudes and pre-conceived opinions".
No, you do not have to be an Alcoholic to have this serious Diagnosis. Absolutely not.
Post us back Dale8
Your need for medication may see a whole new world before you even think about having to go on a hunger sttike or suicide mission. it won't solve a thing, nobody really cares anyway- but I do.
I'm so sorry your illness is getting to a point of that you feel that death is the only way out,it sounds like your caught up up the worlds biggest mouse trap,I know you sound a strong person however please can you say that the medication you have is no longer available to you ,or does it no longer work for you? The only reason I'm asking is have you exhausted all types of medication,or are you also caught in a financial position where you can't afford medication,as I live in the UK and our health service is set up in a different way,I understand where you are coming from with what your saying,but you'll be putting yourself in a situation where others are wanting to help you,have you got any family and discussed how you feel? I feel life is a gift and please try every way to avoid your decision,but I'm truly sorry the way you feel,bye for now
in his post above he tells us that The damage never heals and is a whole different level of pain. And now they want to cut off pain meds. No thanks. Death for me, thank you.
Hysterical opiaphobic here. Medical industrial complex has encouraged suicide. Disabled are supposed to die. It would be easier to just commit suicide and end it quick. I am hoping that this is the start of shining a light on a dirty little secret. How they push vulnerable disabled people into suicide. We are supposed to die in America. Any ideas on getting press publicity. Get the word out about lack of compassion and how they are really just killing us off. Even a news story posthumously. If one person doesn't have to suffer the way I have my death won't be in vain.
Dale you dont sound like someone who is feeling sorry for yourself at all. People who have suffered agonising pain will understand why your doing this and i hope that it gets your pain reliefe re instated. god bless you. love and prayers grace xoxo
yes dale,care and compassion is what you want,so much for the land of milk and honey,I know things are bad in the US,and unfortunately the "system" don't give a damn about individual needs,so if your ever wanting to blow off on this page people will ALWAYS listen,thankyou
Any way any of you can think of to get media attention. I can prove they intend that people who don't have a lot of money and disabled are pushed over the edge intentionally. In the States there are two toll free numbers for suicide hotlines. They both go to the same place. They try to get you to say that you are planning on suicide. Then they will take you to a mental health facility where you will be locked in. They will give you a type of drug called SSRI(selective serotonin reuptake inhibitors). One of the main side affects of these meds is suicide. So why give someone who is truly suicidal a drug that has the side affect of suicide? Why do they do nothing to help with problems that make you suicidal. Pain and disability in my case. They are abusive and just want to make money off of human suffering. Suicide hotlines will verbally abuse you then hang up on you. Why are suicides on the rise in the USA? I hope someone can get a media outlet interested in my story. Even after I die. If nothing else to shame the United States for perpetuating this policy. Which is exactly what they're doing. From time to time I even get someone in the system to admit it. That is hard to do. They do not like to admit it even when it is painfully obvious.
sounds more like a nasty and controlled state,that wants to as always governments do is use the drug as a smoke and mirrors and this is perfect cover up for euthanasia,or murder,I liked the comments,but some people might not of agreed for me to ticked the like box,but I believe that sometimes as society demands nobody wants to hear about suicide,as I witnessed my friend who I found hanging,its a taboo subject,and every one for one reason or another has sometimes has to face up decision's we as humans have the inherent gene is to save life,so it goes against the norm to take a life,certain countries as your probably well aware off have assisted suicide,so then there's all the political correctness involved,who manufacturers the drug,which country supplies the medication and ultimately a doctor to make you leave this planet,a signed piece of paper by yourself,and I can't imagine in a place where your head is at the moment,and perhaps alot of people are uneasy broaching this subject head on,but you've laid your cards on the table and even if a little information comes forward from this forum that could change your mind I would dearly recommend that you try your best to digest any information,your mind is strong,but sounds like you body is weak and suffering,so I shall leave you in peace for now as I've seen this subject has generated plenty of conversation,thankyou
Dale8
This saddens my heart, and all of us as you can read. We understand your pain and struggle. Hold on for a little bit longer, better treatment is just around the corner. Is there anyone that can help advocate for you?
Dale
What meds provide you with pain relief? I am under pain management and have no issue getting the pain meds I need. You need to find a new doctor. With out my pain meds the quality of my life would be far worse. With the meds I can work full time and enjoy many of things I did prior to my incident.
Stay alive. Life is a gift and sometimes you have to fight harder than the next guy to realize it.
Jerry
I don't know where you are. I am getting that health care is far better in UK than here. It is a real problem here particularly for low-income people. I have no emergency room here where I would feel comfortable going in for any reason. Doctors in the States are mostly driven by money. Nothing wrong with that but when they are all multi-millionaires and billionaires you get the wrong kind of people in that profession. The system here allows them to get rich whether they are good docs or not. They can get away with anything except stuff involving controlled substances. Which makes it hard on people in pain.
i have secondary breast cancer that has spread to my lungs and sterum, also i had to have half of my right lung removed as they couldn't get to the tumour on that side to see if it was lung or secondary , unfortunately for me it was secondary breast, of which there is no cure, they can only try to control the secondaries, i have my 6th chemo on the 20th and at my 3rd chemo scan some of the tumours had shrunk, but one has grown bigger, i get all the pain relief i need, i have been dreadfully sick on the chemo and thankfully the next chemo is the last, than a scan will show if its managed to kill off or shrink the rogue that has grown. Anyway, because i know i only have a limited time left on this earth, hopefully a few more years, i live life as full as i can, i'm only 54, but i have a fantastic hubby and family, do you have any family Dale? Sounds like you need a lot of support, and if your short of money, set up a page to raise money, people will help you that way if you can't afford the meds.
Dale8
You've had many replies with offers of help & support yet you've totally ignored them. We're a pain forum but always 'hold out the hand of friendship'where we can with any issue but you're seemingly only interested in saying how the USA doesn't care about the sick or disabled.
Why are your pain meds being withdrawn? most on here can only support you at basic level so what pain meds were you on and for what reasons are they being stopped?
Your condition is rare but to be honest, it's irrelevant; if you're in pain, that's what we're interested in. Many people on here may have been close to ending their life or at least may have considered it due to their inability to withstand the pain any longer. These are the people that in essence, you should be interacting with. It is however a two way interaction in that one responds to the others' posts appropriately - not a one sided, " I'm in a worse headspace than you" scenario so please 'listen' to what support is being given.
You posted on here for a reason.......
RJC
don't know what meds your currently on,and in all honesty the only ones I know of that are powerful enough for people suffering with terminal illnesses are the opiates,fentanyl patches,which come in different doses,these are a morphine patch which release morphine into the blood stream,or after that its in a liquid form,taken orally,now I presume every country has its own regulations to say who and if at all receives morphine,and even each individual's health has an impact on wether you can be able to receive it,as the drug can mask a heart attack as of its potent strength,so there is pain relief out there,but unfortunately like with all medication it can have side effects,so it's madness in this day and age that you should suffer in pain,even though my situation is not as bad I'm in constant pain with peripheral neuropathy,and yes I have a high pain threshold,and anything to do with nerve damage it's just nit easy to sort out with painkillers,more or less impossible,there are lots of people who suffer here and even with pain killers etc,try and support each other in different ways,sometimes a snippet of information might give you different ideas and lead you down a path of life,that you might have missed,thanks
Hi Dale
I live in Pennsylvania. Are you a lady or a man? Anyways, no one can feel your exact pain. We all have unique pain and other issues. The body does not want to be in a constant pain state. Part of the battle is mental. You have to believe you will improve and get better. The mind is the most powerful drug. Human made drugs can be very helpful too. You need to get a grip and get through this. Many of us have been to hell and back more than a few times. So comparing who is in more or less pain really doesn't matter. I understand your mind set but you get through this tough time. You will get better and look back at this difficult time as just another one of life's journey. You have a purpose like all of us here. You can fight hard and help others. Don't ever give up. Keep strong and find a solution -one is out there but you must find it. No one will find it for you.
Jerry
Hi Dale.
I'm live in Montgomery county. The doctors here are good and caring. At least my doctors. He is in Bucks county. I don't know your full situation or bio but I would suggest finding a new doctor who is compassionate and can responsibly help you and find you some pain relief. I had 24x7 severe nerve pain in my legs and feet for a solid 18 months after my spine surgery and fusion. I'm still managing my pain but it has gotten better. The meds I take and I've been through so many kinds are helping. I have to be very careful how I exert myself to not aggravate the pain. I also use a foot massager to help stimulate and heal my nerves. There is nothing so bad as nerve pain. I hope you get better care and find some relief. I know how hard it is and I've often use to think of ending it all but I never wanted to give up because I have a family depending on me and also for myself. I have a lot to live for, and do do you. Where do you live now? Does anything help give you relief?
Jerry
I live in Reno now. I know exactly what you mean about mental power. I really shouldn't be able to walk. Left foot totally paralyzed. They call it nerve palsy. Right foot partially paralyzed. Damage to left foot all the way into bones. They call it a form of dystrophy. It is really the major league of pain. I don't think I walk without God's help, but I refuse to give him all the credit. You are dealing with form of nerve pain too. One of the hardest things about chronic pain is only you know how painful it is. Only you will ever know how hard it is.
in reply to Dale8
Sorry - Doctors are not quick to "Diagnose " this
li hope coming here has been a help to you Dale, your answers are sounding so much more positive, really hope you get sorted soon, i have dreadful pain but had a fantastic pain relief nurse who sorted everything out for me, because of extensive surgery, i too have a lot of nerve pain and its horrendous, the drugs i have is fentanyl 100mg patches, oramorph, and a drug called Lyrica (100mg) its also called Pregabalon, your doctors would have a different name for it, its excellent for nerve relief, and if you have never had it, i am sure to god you would feel the benefit of it. Anyway, as we say in the UK, keep your chin up, and come back soon to let us know how you are doing, cos we care about you.
Lyrica is what it is called in the USA. It does work well for nerve pain. I unfortunately got a potentially fatal side effect from it.
Thats such a shame, as it is a first class drug
Also be aware. A lot of times doctors won't tell you. Sometimes they don't even know themselves. Lyrica has a horrible withdrawal syndrome. It lasted for months. Almost as bad as opiate withdrawal, but lasts so much longer which in my mind makes it worse. Plus with opiate withdrawal, after the worst two days it gets better every day. With Lyrica felt horrible for months.
Paton, I've just learned out through reading posts , comments , replys that you have lost your sight. For this I am truly sorry. When Dale8 replied "Love the baby cats" your reply was "not sure of the connection?" On looking at where that came from, I see romana1 has two kittens in the Picture /portfolio. I didn't get the connection either Paton. It does and for you requires Sight. God bless you Paton.
It's not what other people think is true or untrue about you and yr disability, It's what YOU think. If you know you have worth and purpose as every one of us does if you care to stop and Look, then what others think of you really doesn't matter. This is my practice every day.. ...i write a list of everything I achieved yesterday every morning. That can be passing loving messages on fb, hugging a sad person, giving a compliment, making good food for myself, dressing well....they are all achievements. Especially when yr in pain mentally and physically. I also realise how amazing I am for being so strong, having the courage to continue and yes some days at the moment it can be very hard. But I also know that if I trust in the universe everything I need will be sent to me in exactly the right time. And that's what keeps me going. It's your choice what you do. No one can tAke that choice away. But are you sure you looked at all the options. Just my thoughts. Loving wishes whatever you decide to do.
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