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Old 08-06-2010, 12:50 AM   #1
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RSD ignored... especially if you don't have money

I lost everything because of RSD....my career, my fiancee, my life savings, my dreams. And NOBODY will do anything about it. My RSD was caused by bad foot surgery. It spread and is now full body. It took me 4 years to get it diagnosed because I was treated like a mental patient by the very doctors who harmed me then said I could not possibly be in pain.

I have recently asked some specialists to help me probono since I am now broke from all of this mess. They all said "sorry we can't help". That means "we WON'T" help since you cannot pay us lots of money.

I have no faith in the medical system anymore. I am tired of drugs that make me sick and get me addicted...but cannot get off them without MORE trouble. I am tired of never being able to reach anyone, tired of not getting treatment (the state hospital I have been reduced to going to doesn't cover Pain Management).

Meanwhile the doctors who did BAD surgery on me messing up my joints...which then led to RSD...are living it up with their private surgical centers and nice lives. I tried to sue them but no lawyers would take the case because in their words "the award caps are too low thanks to the insurance companies...there isn't money in it for us to do on contingency".

I BEGGED a specialist in TX this week to help me and he said "sorry we cannot do charity".





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I cannot stand this pain. I don't need more pills that make me throw up or twitchy or not able to sleep. I need the PAIN fixed. Then the mental stress will go with it. Pretty simple concept eh?

If I do end up ending my life to escape this pain I am going to write down the names of everyone who denied me help with the title "This happened because you refused to help". I want everyone who denied or ignored me to KNOW they had the chance to help and chose not to. I want them held accountable for their dismissals.

Am I angry? Hell yes I am angry. That is a natural reaction to be harmed and made ill repeatedly by supposed medical professionals and then ignored once you run out of money. So is depression. Pain sucks and makes us angry and depressed...I bet someone spent a lot of money on a study to prove that obvious gem.

Shame on all of you who turn a blind eye to people like us who are DYING from pain. Shame on you for labeling us nutters and blowing us off. Shame on you and may YOU get RSD and have to live with this misery as a punishment. Anyone that thinks that is mean can take my pain and see how you would feel in my shoes.

I am tired of being ignored. I want to live but I cannot live like this. For years I have gotten worse and worse and USUALLY a doctor caused it.

Do you know why we sound crazy now? Because YOU MADE US THIS WAY by ignoring us, misdiagnosing and mistreating us, by putting your egos in front of our well being, by denying us care if we have no money and making stupid excuses why you "can't". THAT is what drives people mental...that and constant mind numbing pain that you cannot imagine. I cannot sit, stand, pee, poop, eat, walk, sleep....do ANYTHING without pain and limitation. The people who ignore us and abandon us have no idea what we suffer. They should all be ashamed.

I need help and cannot get it. I need pain relief more than you docs need a new BMW or set of custom clubs . I had the money to live but you took it all making me worse and worse. No apologies, no refunds, now no help. YOU did this.

Last edited by Administrator; 08-13-2010 at 11:16 PM.

 
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Old 08-06-2010, 07:15 AM   #2
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Re: RSD ignored... especially if you don't have money

Hello, I am sooo sorry for your pain and you are not alone in this. I also had foot surgery, and was ignored by my podiatrist and told everything I was feeling was normal and it cant possibly hurt that bad and that the pain was something I would just have to work through.
I went to another doctor an ortho who suspected right off the bat rsd so after xrays mris and numerous other tests to rule out anything else He then sent me to pain management my dr is wonderful he is honest and sorry to say some people do go into remission but most of us live our lives with meds, nerveblocks, spinal cord stimulators etc.. to manage the pain but not as a cure, there is hope though we do live with this have you tried to apply for disability or tried your local medicaid office or free clinics?
contact a social security disability lawyer to help you start the disability process dont give up hope there are many people on this board who having been fighting this fight for along time and may be able to offer you some great advice I am fairly new to rsd my surgery was this past Dec I was dx in april.
wishing you well
Kelly

 
Old 08-06-2010, 06:24 PM   #3
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Re: RSD ignored... especially if you don't have money

I have applied for SSDI but it takes over 3 years in my state to get the court date for the first real chance at approval. I will not survive that long mentally. I avoided that for a very long time because I didn't want to suffer the process. I lived off of my hard earned savings and still had hope I could improve. I know with my age and the current state of economics in this country I will be denied. That's how it works. It has been humiliating so far and I have already seen how much of a bureaucratic joke the system is. Even if I got it right now it wouldn't pay for the super expensive options that are the only things left. It is not even enough to live independently on really.

For years I just "sucked it up" and got by. Now things have deteriorated to the point that I cannot do that much longer.

Funny how many RSD cases start from podiatrists doing foot surgery isn't it? I now know both of my series of foot surgeries were unnecessary but at the time I was trusting of the so called "professionals". The same people who turned on me to protect themselves as soon as things went bad.

Then when you naturally get upset and depressed they try to pretend you are a primary mental patient...rather than having normal mental reactions to pain. I have tried so many bandaid mental meds and jumped through the hoops because "what have I got to lose?". But NONE of it helped and most made me sick and feel worse. And somehow they act like that is MY fault. They right you off as mental rather than addressing the problem. They cannot admit fault for anything...all they see is self protection.

My life was stolen from me...literally everything I have earned. From people to things. Then the people who were supposed to do something about that (lawyers, courts) couldn't be bothered. I have proof of everything and was ignored because once again of "money".

This is not a phase...I am not grieving and in the anger stage and will pass it...I am at the end of my ability to function and survive. And not a single person I have reached out to for last ditch treatment has had the kindness and decency to help. None. That makes me angry.

Last edited by ihtgdfp; 08-06-2010 at 08:13 PM.

 
Old 08-06-2010, 09:33 PM   #4
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Re: RSD ignored... especially if you don't have money

A few years back I had a friend who was dying. I posted in a few places asking people to help and the only replies I got were rude things like "she should have had insurance" (nevermind that insurance costs more than most people earn in a month if you pay out of pocket and your job doesnt offer it) or "she shouldn't have gone to that country" (where she caught a fatal infection). People suck.

Blame the victim...act like actually BEING a victim is a weakness on their part...ignore them...make excuses. That is the human way. Can't miss Survivor or Dancing with the stars...have to get that new pair of 2000 dollar shoes...you know...important things.

I saved lives in my career...many...I gave and gave of myself. I never turned anyone down who needed help. Yet when I ask for it people cannot be bothered. Thanks to the docs who ruined my life and took it all...thanks to the lawyers who blew me off because it wasn't worth their time...thanks to all those people who said "if you ever need anything just let me know".

People can put up web pages begging for money for boob jobs and other nonsense but I cannot get help to save my life. I hope the excess my doctors live in is worth my life. I hope their wives custom curtains look really nice and give them comfort while I am in more pain than they can ever imagine. I see now that karma doesn't exist and being "good" is only for our own mental comfort because I never did a thing to deserve any of this yet the people who harmed me live well. Lesson learned...but too late.

I bet some mod will lock this thread just like people lock you out in real life. Can't have the ugly truth out there can we. Better to pretend and ignore. Ignorance is bliss.

Amazing

Last edited by Administrator; 08-13-2010 at 11:18 PM.

 
Old 08-07-2010, 07:25 AM   #5
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Re: RSD ignored... especially if you don't have money

Hello ihtgdfp; are you there? Please please understand that there are many of us out here that know EXACTLY how you feel; the anger, frustration, feeling like no one cares or will acknowledge your pain any longer. Money doesn't always make the dr's take your word for the pain you feel. My rsd started with a slight sprain from a work injury...I know u're going to think; oh, yeah sure hers is paid for so she's getting or got a doc that understands & believes the kind of pain we're experiencing. Sorry, NOT! I've been with the same rsd pm dr from the start; had the blocks, oxycotin, methadone (which I end up having to have a gall bladder surgery but no no it had nothing to do with the methadone), now have a spinal column stimulator that's been moved twice not counting the lead wires they moved a couple of times "trying to get the stimulation to my elbow", well, let me tell you; it's sucks here too. I really wonder where all these people get the nice understanding dr's. I get to see mine once every 3 months; in that time if your pain becomes unbearable & you call the office, too bad you have an appointment in 2 months. Last time I seen him I was having a "good couple of days"; kinda looked like my old self...the antidepressants & new sleeping pills had kicked in & I felt more like my old self so what's the pm dr do & say? 1) wasn't much interested in what I was saying about the pain in my neck from where the paddles from the spinal column stimulator has finally ended up at & by the way, has gotten to the point where I walk around (when I turn it on) looking a f'n turtle cause my head's always trying to get away from the pain & pressure that's going on where they did the partial lamenectomy to get the f'n paddles in so I'd get the stimulation to my elbow; yes, by george i've got stimulation way down to my hand that hurts along with my shoulder that just kills me BUT now the burning in my elbow is breaking thru their wonderful SCS junk thing. So i go to the pm dr. He sent me for a EMT? where they check for carpal tunnel; now remenber i'm in this 3 and half yrs. now AND guess what? no carpal tunnel; he just sends in a request yet again (4th time this yr. been turned down every time because i just sit down & cry; i can't drive 70 miles one way to the psych drs one day & drive that far the next; I'm going to kill someone on the road; have had 2 accidents in the past 3 wks. both not my fault but may not have happend at all if i had better reaction time from either my right hand has constant spasms or the meds. No i'm not on oxycotin or methadone (the drs drugs of choice here) took myself off them; one made me nutteier than i already am & the other made me sick so its now Vicodin; neurontin for the burning; zanaflex for muscle spasms (& this dr said if it were he - he wouldn't take these things. WHAT???) now psych meds because i'm in the frame of mind that you are now...what i'm trying to say is i very much understand your frustration believe or not...my injury leading to the rsd is pd for yes but it's just made me feel like a guineapig. My body looks like a stinkin road map where they've moved something from one place to another and oh yeah; did i say that the burning in my elbow burns thru the stimulation now? and guess what? The testing for carpal turnnel or the upper arm whatever didn't show anything so he's sent in a request for you'll like this...vocational reabilitation for the 4th time. Makes it sound like i'm a flake doesn't it? i'm not in awful awful pain on a daily basis now; the psych drs have tripled my sleeping pill so maybe i'll sleep thru the pain that wakes me every single night? Yeah; I can commiserate. Don't consider killing yourself...consider moving to another state...keep looking for a doctor who understands rsd; apparently from other people who post that they are out there. I'm stuck with this dr. unless i can get him to give me a referral; isn't that nice? something makes me think just how ****** this will make him when i see him in what, a month?!!! yeah; i'm thinking of giving up too & i've been extremely nieve? can't spell...to believe in the drs; today i'm sitting here willing you to think think think where might you know someone else someplace else that you can go & find a dr to help you. I know i feel just like giving up. and i've had all the treatments this dr. is going to give me; he just keeps shoving back to voc. reabilitation to be rid of me i think, to cover his own hynie whatever but i know i think alot about the railroad tracks in my back yard. busy tracks. be real easy to just throw myself in front of it...be my luck i'd just get severly injured & be in worse shape yet tho it doesn't feel like it could get any worse. started in my elbow; makes both hands burn & hurt (not according to the dr.of course) up my arm to my shoulder on the inside of my arm onup to my shoulder & now my collarbone hurts like hell. no, no, rsd doesn't move around...per the dr. I can feel your pain so so well. But ending the pain with suicide isn't the answer. I know that & so do you. just keep talking to doctors, keep at the social security office for help...just don't give up. just don't give up. if anything in the world helps you at all...know that the 111 people that read your thread are thinkin; we all know how u feel. I hate the pain, the control i'm losin in my hand..taking me hrs. to type this; I hate that i really do need the man that lives here & i've lost my independence; i hate it i hate it i hate it. But now it's drink my coffee; take what meds i have; know that Mon. i've got to deal with issues again but i'm going to pray for you & me, put on my big girl panties & get on with it because...i'll be damned if THEY will let it get me thinkin of lying on that rroad track. Thinkin of You my friend.

 
Old 08-07-2010, 08:06 AM   #6
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Re: RSD ignored... especially if you don't have money

I believe you are at the end of your rope, and my heart aches for you. People don't always reply to extreme posts because they don't know what to say to someone who is angry and hopeless. You're also asking people who are suffering beyond belief to take on some of your suffering, and it's just too much for them to do. With that said, I'm sure that anyone who read your post reached out to you in their thoughts, despair, and perhaps prayer - you haven't gone unheard or unrecognized.

I don't suffer from CRPS (RSD); my son does. My username is "momofrsdkid", but it's a misnomer. He was a kid when this started six years ago; now he's a man. We have seen 30+ doctors, specialists, therapists, etc. Nothing has diminished his 24/7 pain and the weakness. The ONLY thing that has allowed him to continue to walk/function is the fact that he soldiers through 3+ hours of stress-bearing physical therapy on a daily basis. He can do that because he's still on my insurance and we support him, and he lives at home. ...but you don't need his story or his struggles, you need a pragmatic approach to deal with your situation...

I am recommending this as a Mom, and as someone who has counseled my son through numerous suicidal thoughts and melt-downs: you need to make a plan for today, and before you go to bed, make a plan for tomorrow, and continue along those lines until you can work up to planning two or three days in a row, and gradually you will find yourself moving forward and coping with the inevitable cycles of depression that beset anyone suffering from real pain for long extended periods. It's basically starting with the premise that suicide is not an option - for whatever religious, moral, or universal reason you believe. For my son, it was the realization that he at least had an obligation to not destroy me, which his suicide would do. You give yourself "to do" lists and you stick to them no matter how much pain or venting or crying you need to suffer in order to accomplish the list.

Now, as to what to include on the list, don't be ridiculously broad with items like "survive" and "don't kill yourself". Start small and positive, like "organize my desktop", "read the newspaper", "clean the kitchen". ON EVERY SINGLE LIST, YOU MUST INCLUDE SOME "PHYSICAL THERAPY" THAT FORCES YOU TO MOVE/USE WHATEVER PARTS OF YOUR BODY HURT. This will bring you more pain initially, but over a period of weeks, the daily use will strengthen the painful part and might actually reduce the level of pain you feel. At the very least, you will feel as if you have part of your life back because you will improve your function. CRPS (RSD) involves more than just pain signals from the nerves. It affects muscle weakness, internal organs, circulation, etc. The PT isn't a cure, but it treats some of the symptoms by forcing blood flow to the affected area. Do NOT ice your painful areas! This only restricts blood flow which will aggravate your condition.

Not knowing how well you function or anything beyond your anger and depression, I'm going to stop here. There is no solution, but the condition won't kill you, so you need to learn to cope and a new normal. These threads are helpful if they lead you to practical management techniques or scientific breakthroughs or you're someone who needs other people posting their hugs/love for you. Other than that, find someone else to do the research and focus on getting back the parts of your life that you can. Ketamine is the newest thing out there, with the greatest promise of relieving SOME pain for SOME time, but even those with insurance aren't covered since it's an off label treatment. Get yourself whatever minimum state insurance that you can for the time being, just in case you develop another medical situation, but don't waste your time fretting about not having a pain doc. Drugs don't work; most spinal cord stimulators and nerve blocks have minimal or no effect over time; physical therapy doesn't cure but offers best hope for maintaining/increasing function.

Find a family member or close friend that will allow you to break down periodically, just to relieve some of the stress.

Sorry that this isn't mind-blowing research and most likely you'll shake your head at the futility of my advice, but at least know that people reading your post hear you, understand your pain, and aren't ignoring you out of callousness or indifference. Suffering is lonely, and that's just a simple truth.

I only check the boards periodically.

Last edited by Administrator; 08-13-2010 at 11:21 PM.

 
Old 08-07-2010, 08:11 AM   #7
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Re: RSD ignored... especially if you don't have money

I am soon going to be in your position with insurance my short term disability runs out in 2 weeks which means my health insurance and paycheck also, my pm doctor doesnt take medicaid only medicare associated with social security (you have to be on ssd for 2 years before that kicks in) and yes the system SUCKS!!!!! I am also scared and soooo angry, but I have 5 children ranging in age from 13 to 22 yrs old. I am a wife my husband was in construction everyone knows that economic story. He finally found a job last week. I hurt everyday not just the physical pain but the pain of things I have lost (myself) I am not the same person I was before my surgery. And I guess I have decided to turn my anger into the fuell I need to fight. Fight for disability, fight the pain to get up out of bed and be in my childrens lives, fight to face another day, this is the hardest thing I have ever had to deal with, but I have found out the only person who can truly advocate for you is YOU, use your anger to fight for yourself dont let the doctors who did this win dont let the rsd win. You spoke in your first post about listing all the drs if you were to end your life, think about this if they dont care now, they wont care later they wont admit fault!!!!! They will say you were crazy to ease their conscience(if they have one) use your anger and pain as fuel go to every news channel, newspaper, church scream out at the world maybe someone(the right someone will hear you) it only takes the right person to see or hear you and that one person could make the difference. This is your life dont let everyone who has denied you be your puppet master and pull the strings that cause you to end the only thing you have in this world (your life).
Be strong and kick and scream do not go silent into that long dark night.
Kelly

 
Old 08-07-2010, 06:28 PM   #8
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Re: RSD ignored... especially if you don't have money

The thing is they already HAVE won. It doesn't affect them in the least if I live well or in pain. I do not believe in stupid sayings like "living well is the best revenge". Those are all things people say to make themselves feel better.

I ask them straight out "will you help me or are you going to reject me because I cannot pay your fees?" They say "Sorry we can't help you...we really wish we could do something" ********. They CAN but they choose not to. When you say that they hang up, run away, call you a nutter.

Kicking, screaming and making noise just proves to them in their minds that we ARE crazy. It's sick how they create a situation then put everything on you.

I have had them call me a drug seeker because I am fidgety and sweaty and look bad...never mind that it's from PAIN. Since it fits the seeker profile they default to that...because it's EASIER for them.

I have learned that people will either clam up or attack when they know they are wrong and feel their ego is threatened. Most of the time the latter. No matter what I do or say I will be dismissed by most as nuts. I cannot win.

Regarding doing PT daily it makes it worse. If I do what you suggested I have MORE pain for days until the flare that it caused dies down to the normal horrible level. I can't do anything without causing more pain.

I am tired of dealing with people who get to go home to normal lives after they make excuses and blame and send me away. They should have to be held accountable. No other "business" gets way with this. No other "business" requires obscene charges for no return or service. Anyone who sues is labeled a "money grubber" yet I couldn't even sue for the bad surgery because of more greed (the lawyers). Spill coffee because you have no common sense and get millions. Have negligent surgery and you cannot get anywhere..why? More greed....insurance companies have lobbied to protect themselves.

Look at what they do to us and then look how they blame us or ignore is. Reading this and the pain forum here makes me sick at my stomach. ALL these people who are made worse by these horrible "treatments" that we pay tons for. How is it allowed?

Forums are generally more concerned with rules and authority so they can keep things calm for their ad revenue than helping...look at the lack of PMs allowed here without "approval". There is no good source of help.

People get driven off the edge and then blamed for it. You become a "deceased" label in their files eventually and they go to the restaurant for cocktails.

I am a fair and reasonable person...and I want fair and reasonable behavior from all I interact with. But it seems hardly ANYONE I have to deal with is fair and reasonable. They do what protects and profits them...

Last edited by ihtgdfp; 08-07-2010 at 11:43 PM.

 
Old 08-08-2010, 11:25 AM   #9
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Re: RSD ignored... especially if you don't have money

I understand you are angry and hurt, I truly dont know what to say. I dont know you but have found my self thinking of you and how you are every day since I have read your first post. I am not in a position to help I am not a Dr. or rich but if I was I believe I would help you. Which is my point in saying go to everyone tell your story if some people label you crazy, to hell with them there opinion doesn't matter move on to the next and the next. I understand your tired of being sick and tired. I dont know your situation, you may have already tried but can you apply for medicaid? Do you have family? maybe someone in another state you could stay with, where you may find some different doctors? I know it doesn't help you but know that I have heard you, and now you are someone I truly worry about and I am genuine when I say to you I hope there is help for you I am sure that if you can affect a perfect stranger(me) through one post on a message board that there has to be others out there in a position to help, that would help you if they hear your story.

hoping you find hope,
Kelly

 
Old 08-08-2010, 09:00 PM   #10
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Re: RSD ignored... especially if you don't have money

Me again IHtgdfp; yep, if figured what the letters stood for just now. And just so you know; you're right. You're right that PT makes our pain horrindously worse (wonderful it works for her son but not here; had occupational therapy for mmmm maybe 3 sessions & they cancelled my sessions when I started to pass out from pain). And You're right that... for the most part; no make that a huge part of the time; those you'd think would understand at least a little bit what you're going thru seeing how when u go to the ER these days the one thing that states on those big ol' posters on the wall where it says that a patient has the right to receive care that includes pain. period. That's why they invented the pain scale. Right? or no; maybe not...You're also right to feel sickened about allllll the medical procedures that all us RSD patients have snowballed our way thru...but right now if you had the choice..wouldn't u try just about anything that maybe.. just might??? help??? I'm like the nice lady who's really worried for you & about you. Where in the world do you live that someone somewhere doesn't get how much pain you are in? Never mind; I know that shouldn't answer that question; it's just we just feel soosooosoooo bad for you. Alright now. Don't get pissy like I do (all the time) that you're just being pitied. No, we understand the daggone system & how it takes time & the right person to hear you that they finally get the right diagnosis.
I just finished a 3 nearly 4 day "flare-up". I'd had it. Then I remember this forum and then I remembered the RSD support group that meets next wk that I've been putting off for 3 yrs going to. Call your hospitals; find a support group for rsd; find those people that have this stinkin disease & find out who they see...like someone else said; make this stinkin lousy pain make you mad enough to not give up...on YOU. Quit & I'm sorry, I know you hurt so bad that going to sleep when you get to sleep is knowing that tomorrow you're just going spend the day in pain yet again; but try to quit thinking about the idiots that haven't listened you...find a way, a friend, a church, a hospital that has special funding for folks that have little or no income. Please please don't think we're being condesending; we all just wish we could do more for you here then try somehow to give you some kind of support. Whether you like or not; I'm saying a prayer for you now..someone's going to cross your path & it may be baby stinkin steps to help; but there is going to be someone but you have to help yourself; the stress is worsening your pain. I guess I should leave you alone & I will for now. Take good care & I hope you have a half way decent night.

 
Old 08-08-2010, 09:39 PM   #11
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Re: RSD ignored... especially if you don't have money

Thanks to all of you. Not to sound ungrateful but I am not someone who feels better knowing other suffer or are worse. If anything my empathy makes me feel worse. I HATE stupid sayings like "well it could be worse" or "that kid has no legs and has a positive attitude" kind of crap. I hate shallow pointless positivity with no foundation.

I have tried everything I am willing to risk excepta treatment in TX . I cannot afford the $15,000 to $20,000 or more it would cost me for the several weeks of his standard treatment plus machine cost (about $5000 which is criminal). It might not even help. I asked him...begged him. He said "sorry we can't do charity". There is that word "can't" again. I HATE it when people say "can't" when they mean "won't". It's wrong...they could help but they CHOOSE not to because they will not profit enough from it. If I walked into his office with piles of cash I would be greeted with open arms. Same with all of them.

I spent my life savings...tens of thousand's of dollars paying the exorbitant fees of doctors once I lost my insurance...I got nothing from it but grief and poverty.

None of the other extreme options are things I am willing to try even if I had the money...like Ketamine coma. Plus what they charge for that is criminal and it doesn't cure anyone just reduces for a while maybe.

I had to go to the ER in the middle of the night not long ago because it was so bad. I saw how they looked at me. How they acted. I SOUNDED like a drug seeker and probably made myself look more like one talking about hating being mistaken for one. I felt worse the next day when the IV meds wore off. There is nothing that allows me to be functional. I am sick of meds that make me worse more than better. I am sick of pointless costs for things I know won't help.

I am living in the spare room of a family member (very uncomfortable social relationship) and it is miserable. I am grateful to have the bed but it comes at a cost with a lot of mental stress. I have no privacy, no peace and quiet, no access as it is in suburban hell. I have asked for help from several supposed family and friend's and they all have excuses. Yet they all seem to be living well and taking trips regularly etc. Same fakes who will be crying at my funeral...that makes me angry. They don't deserve it. I am honestly to the point where I regret every doing anything for anyone. I no longer believe that being good means anything. I don't believe that you can earn trust and respect from others because I have seen first hand how they will say all those things are true but then bail when it becomes a bother. If I had it to do over again I would be out for me and me alone. Nobody else will have your back unconditonally no matter what they say. It's all conditional and hot air.

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Old 08-09-2010, 07:07 AM   #12
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Re: RSD ignored... especially if you don't have money

Well alrighty then. Has it crossed your mind at all that no one, not family members or others that you have asked for help are unnerved by your attitude? Right now I know I am. You have every right in the world to be as bitter as what you are...but where's it getting you? I have family too but I don't see them much; they have their own lives; my boyfriend goes to work (very early I suspect so he doesn't have to listen to me whine) & is gone 14 hrs. of the day so I'm here by myself alot; I try very hard not to call my friends these days because I know they don't want to hear yet again how much I hurt when the majority of them are working with pain; they don't understand the pain of rsd so I don't bother them. I spend the day with rsd keeping me company all day long. And LISTEN; I'm not telling you this for you to "want to listen to someone else's problems; that you're past the point of caring about another single person on the face of the earth" alright already we all get that. Mostly because when the pain's at the worst we all feel that way too but work very very hard to get past just focusing on the damn pain & consider others. I know you are worth the effort of just keep pestering you to do something .... anything to keep bothering everyone you can think of until someone listens. Maybe try to not be so angry that you may be offensive & bitter & just someone will listen for a change and not just shrug you off. You sound like a very intelligent person. You have access to a computer. Make yourself heard. But not in the scary manner you're coming across now. You're worth the trouble. You've got it extremely rough but guess what; most of us do. You have no idea what I've been thru in the past 6 months that doesn't have anything to do with the rsd .... I know that you don't give a rats *** either (sorry monitors but there's a point here) and yeah I get that you are past the point of caring about anyone else...you have every right to but where's it getting you? I"m not sure why I keep trying to help you see...that there are people out here & there that do care...maybe just somehow finding a way to calm downis a start.
I've been where your at; tried to throw my boyfriend out after my Mom passed away after suffering the most horrible way you can even imagine & my best friend dropped dead from a massive heart attack just before Mom passed on. I just wanted to be alone. To hell with anyone left that might care even a smidgen. But he wouldn't go...& I'm learning to deal but its' taking time & a continuing fight ... oops there I go again; going on bout myself - you don't care or have any "empathy" left to listen to others pain. Fact of the matter; You are not alone...you've started here; you have people from all over the country wishing they were there to help you find your way. So don't stop here...

 
Old 08-09-2010, 02:13 PM   #13
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ihtgdfp HB User
Re: RSD ignored... especially if you don't have money

Quote:
Originally Posted by scioladyohio View Post
Well alrighty then. Has it crossed your mind at all that no one, not family members or others that you have asked for help are unnerved by your attitude? Right now I know I am. You have every right in the world to be
Where do you think my "attitude" came from? This is what I was talking about when I said people blame you. My "attitude" is normal given what I have been through. I tried calm and normal and reasonable...FOR YEARS...and people do not respond as they should.

I have been on the phone all day with a hospital and people blowing me off and lying to me. One department blaming the other and nobody taking responsibility. The literally hung up on me when I asked what to do when both departments are telling me the other should deal with it. "Sorry nothing we can do gotta go". If I had money or good insurance I would be getting the red carpet treatment. Now that I lost all that and am "poor" it's too bad so sad.

Nobody who CAN help will. THAT is where the attitude comes from...not the other way around. My attitude is a result not a cause.

I am angry for the very reaction you are having. I cannot win. I cannot even be rightfully angry without someone trying to blame me or getting attitude back AT me. If you are nice and reasonable and ignored...and that upsets you and you still remain nice and ask for help calmly again then what?...ignored...then you get mad and people say "oh my why the attitude that's not how you catch flies with so much vinegar". It is a closed loop. No matter what I do someone will find fault with it and if they can't they will blow it off.

It's just like the drug seeker label. If you have NORMAL appearance from being in pain you are oft labeled a drug seeker. You cannot change people's WRONG assumptions once they make them normally either. If you try to explain..."drug seeker making excuses"....if you get mad "see drug seeker he is getting mad he can't get his drugs....loser". They give you no fair options.

I don't think you and I are the same...I would not have thrown my fiancee out...she abandoned me because she assumed I was not "trying hard enough" to be normal. She falsely judged me and made a life changing decision for us based on other people's WRONG ideas. "He is lazy"..."He should just deal with the pain and get a new job" "It CANNOT be THAT bad". This is the nonsense her friends and family peppered her with. THIS is how people are. I do not want to "just be alone" I "just want help". Nothing I am doing is wrong or inappropriate or the cause of any of this. It is all the result.

If you smack a dog and he bares his teeth at you you cannot say "wow that dog has anger issues". I am tired of being smacked and then blamed. I am tired of people LYING to my face. Saying "we CAN'T" when the truth is they are CHOOSING not to because of greed and profit. Forget pro bono they won't even charge FAIR prices for anything because the system is so corrupt and messed up do to insurance pricing. I am tired of having no recourse when people abandon and ignore you. I am tired of being attacked when I point out this poor behavior. I am not crazy...I am normal. THEIR behavior is what is wrong not mine. But half the people will say "he blames others for his problems". And they will actually believe it is WRONG to blame someone for that they are responsible for. I am not a martyr for a doctors poor behavior. It is on HIM not me but he will take no responsibility for it and latch onto every excuse he can just like the "your attitude is the problem" kind of stuff. NO NO NO. I will not allow people to turn this around on me.

Last edited by ihtgdfp; 08-09-2010 at 04:50 PM.

 
Old 08-10-2010, 07:41 AM   #14
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scioladyohio HB User
Re: RSD ignored... especially if you don't have money

ok ok ih; obivously i'm not helping either. I apologize for using the word "attitude". I understand now that no matter what I was trying to "explain" to u was only & is only agravatting u more; i'm sorry. Wishin & aprayin someone listens to you soon.

 
Old 08-10-2010, 05:49 PM   #15
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Re: RSD ignored... especially if you don't have money

Hi Ihtgdfp, I know I asked you before, and you said you have tried everything, but I was wandering what happened when you applied for medicaid? Sorry if this is to personal and not trying to be offending just was wandering? I know that venting is very important, and also know that the people closest to us are the hardest people to vent to because us rsders have alot of venting to do, so I say go ahead let it out maybe not now, but maybe just being able to be heard may (or may not) start to help even if just a little, I know it does nothing to actually change your situation only help get stuff off your chest.

 
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