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    Old 12-15-2010, 03:02 AM   #1
    zleeb
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    Angry What is this board supposed to do?

    By law we cannot discuss doctors, medicines, how to obtain them according to the rules I just read. I am a chronic pain sufferer and have been for almost 20 years. With a horrible increase in my pain over the past 4 years. It has cost me my job (I think). I am running out of insurance or better I cannot afford it!! Not on unemployment. My pain has caused me to be unable to obtain employement for almost a year. How does it sound when you tell human resources you might have to take a month off for some surgery? Do I lie and/or say nothing? What about insurance if I do get hired. I am 51 and have spent all of my retirement money. I take care of my wife who is mentally disabled. I have been married to her for 25 years and love her dearly but I cannot communicate with her because of her PTSD illness. I also try to help and take care of my 75 year old mother who has had a stroke but is able to take care of her basic necessaties.

    The pain I suffer from is I have six herniated disks in my cervical spine, three could cause paralysis of a serious nature according to my doc. I currently have numbness in my arms and find it difficult to write and type because of the numbness.

    I have degenarative disk disease, stenosis, and bulging lumbar disks. The pain I am in is unimaginable some days are better than others mostly not. I sometimes cannot walk. Oh yeah I also have diabetic nureoapathy which means I cannot feel my feet, not good if your diabetic.

    Soooooo, any comments, support, or what ever would certainly help I suppose.

    What I really need is to talk about my meds and why aren't they working? I know why doctors are such wimps because of the abuse. I have several medical conditions that prove I have pain issues yet every doc I have come into contact with has been a wimp when it comes to medications. They are all about spending the big bucks on facet injections, epidural injections, etc. I can get so MAD but it is the degenerate drug user that causes the medical staff of the state of FL to be wimps about pain meds. Please give me a break! Don't tell me to communicate with them I do.

    Anxiously awaiting your replies. REALLY

     
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    Old 12-15-2010, 04:17 AM   #2
    nochange
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    Re: What is this board supposed to do?

    Hello. I REALLY FEEL FOR YOU. I suffer from chronic neck pain. It is horrible, debilitating.
    I am so sorry you are suffering so much. I can tell you I refused those injections just cause I know it is only temporary and what is the point anyway.

    Can you sleep at all with this chronic neck pain????? I can tell you, doctor do not understand what it really means to live with chronic pain. they are lucky not to have it. But I once read about a doctor who actually suffer from chronic pain and needed to take narcotic pain meds;;;;;that is how they understand better.

    Have you tried other type of meds, not only narcotic cause I see you take naroctic and it does not help you? Something like Topamax?. I am taking a low dose of it 25mg for the neck pain and it really helps. higher dose like 50mg is much better but it's harsh on my stomach. everyone is different. perhaps you can discuss this med with your doctor.
    It is called anti convulsulant drugs.

    I really really feel for you and your anger towards life. I am 39 and every day it is not easy living like that.

    I hope you will know no more sorrow in your life.

     
    Old 12-15-2010, 04:40 AM   #3
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    Re: What is this board supposed to do?

    sorry, I am still thinking about your situation and worried about you.
    Alot of us just have to "deal" with our situation and so called "destiny". some of us suffer more and some suffer less. it depends on the injury location etc.

    I was injured in a car accident and I curse the day I let this girl drive me. that was 5 years ago. I do not have a life since then. but I am trying to "deal" with it. sometimes you have to take combination of medication in order to live a "normal" life.

    Have you tried vitamins for neck and back pain? - magnesium works pretty good together with vitamin D and calcium + vitamin B6.

    I hope somebody will jump right in perhaps sammy and say something about neck surgery with herniated disks cause I have no comment on that one.

    Can you rest your neck on the pillow at all ??? same question as I asked you before, can you sleep?

    Let me/us know how things are. we all care for you.

    Last edited by nochange; 12-15-2010 at 04:41 AM.

     
    Old 12-15-2010, 08:30 AM   #4
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    Re: What is this board supposed to do?

    Hello, I am in florida also and I totally get your issue with the dr. Im going through the same thing with my dr. I used to live north and my dr was wonderful, but the dr here pulled me off every single medication i had that was working. Very frustrating.
    I dont really have a whole lot in the way of advice, but know you are not alone. I feel the exact same way. Florida SUX!

     
    Old 12-15-2010, 09:11 AM   #5
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    Re: What is this board supposed to do?

    THAT is what this board is for. We vent our frustrations, offer support and suggestions and ask questions. Someone else may have suffered what we are and can offer valuable insight.

     
    Old 12-15-2010, 02:02 PM   #6
    LLoydofAkron
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    Re: What is this board supposed to do?

    You know I just read the same rules after reading posts the past couple of days that did talk about various medications and dosages so I like you am a little hesitant or confused as to where the line is.
    For whatever reason the threads that I was most interested in were old but flat out did give dosing information and equivilant dosages in differant meds.
    I would also have to suggest changing your doctor/s until you get one that can help you.
    Good luck and hang in there.

     
    Old 12-17-2010, 10:08 AM   #7
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    Re: What is this board supposed to do?

    just wondering here zleeb. considering your ongoing and obviously deteriorating conditions you have going on, have you ever tried to get on disability for some help? that WOULD bring in an ongoing monthly paycheck(if you have enough work credits in your history),and after, i believe it is still two years on ssd, you can also obtain medicare benefits too. there just ARE alot of good reasons to possibly start looking into this right now. it can take awhile in some cases to get thru the whole process so starting now would be a good thing for your future here too.

    my 'whole' process, which also included being turned down the first go round which many people are, was about nine months. this is just a suggestion based upon your situation and something that would help you and your wife. esp if you cannot even find a job? if you have tried to find a decent job and cannot BECAUSE of your medical conditions, thats a very very good time to at least check into the ssd route.

    just so you know, there IS a really wonderful disability board here too way above towards the top of the big list of boards/forums. this really IS a great place to ask any type of 'getting onto disability" types of questions to, among other ssd related questions people have there. that disability forum was huge for me when i was going thru MY process. just something i thought i would throw out there for ya. marcia
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    Old 12-17-2010, 10:26 AM   #8
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    Re: What is this board supposed to do?

    I'm so sorry about your pain and the money/insurance situation. I know how frustrating that is! While there are some limitations on what we can discuss here, I find Healthboards invaluable for the community, the support, ideas/treatments I hadn't heard of, success stories (they give me hope!) etc. Sometimes there are alternative therapies that help. I herniated a disc in January of this year and when my GP and Chiropractor couldn't help, I turned to a naturopath and acupuncture. Using acupuncture, hypnosis, stretching, yoga, strength training and weight loss (30 lbs so far) I am now mostly pain free, off pain meds, and fully mobile. I can't say whether or not this is the route other people should take, but it is working for me. I have numbness and muscle weakness in my right thigh, which I wonder sometimes if it will ever go away, and a constant(!) fear of re-injury which in some ways is worse than anything else. I wonder if I'll ever not be afraid of picking something up, of bending over, etc.

    We are here for you and if nothing else you know when you come here that people that have similar health issues will lend a sympathetic and empathetic ear, and hopefully offer you some ideas that will improve your situation.

    (((Hugs)))

    Dena

     
    Old 12-19-2010, 08:07 AM   #9
    nochange
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    Re: What is this board supposed to do?

    feelbad, how were you able to go on disability? we "only" suffer from chronic neck pain. That is not considered disability. That is considered a limitation.

    I was told I need to go to a psychologist which I refused to stain my name.

    How did you do that? How were you managed to go on disability?

     
    Old 12-19-2010, 10:06 AM   #10
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    Re: What is this board supposed to do?

    no change. unfortunetly it was mostly due to my more in depth than i thought it was going to be spinal cord damage/disabilities combined with very severe CP from central pain syndrome and RSD(both flippin syndromes were actually triggered by very specific damage to very specific areas with the "tracts" and my symp nervous system also being hit) mostly. and of of course severe recurrent depression that was what 'my' case was finally won on(and the ONE actual document that i nor ssd could actually find that documented the actual 'losses" of nerves during my cord surgery). the impact this has had, combined with my sons insane crappy medical nightmares just put me over the edge with the depression crap and trying to simply 'live with' the extreme nature of the two pain syndromes, among other pain crap that we just cannot find anything to really manage too. unfortunetly both central pain syndrome and RSD do NOT respond well with 'only narcotics. but with central not even being touched by narcotics since it does not attatch at all to the opiate receptor is an insane sick feeling like a constant second degree burn over my shoulder blades and in the exact areas of the c 8 and t 1 dermatomes within my elbow and upper forearm areas. we have tried like EVERY imaginable med with no help, just side sick effects that disabled me even more than i was already, esp with lyrica.

    my c spine is also kind of falling apart as well(other c spine surgeries WILL still be needed after seeing my last MRI), and having the two c spine surgeries, and the biggie for me, the one done posterieror on my cord also left behind major myofascial damage/pain processes to just try and adapt to and get SOME of the edges off of(myofascial release therepy has been an absolute godsend there NC and something that could also help with your ongoing upper back/neck areas too). but my left leg and my L hand suffered severe losses, which with my leg, i was able to actually walk again after many weeks following my cord surgery spent in an amazing rehab facility, but still that leg has major motor damage and his spasticity too. my L hand was actually starting to 'claw" from the many fine motor muscles that were also "lost" during that cord surgery too(hence the really crappy typing here). honestly, the ONLY area from literally head to toes that is NOT suffering some level of pain or real damage that just 'alters or deranges' things to the point of insanity IS my right hand and arm. thats it. and trust me, i AM very very thankful that my dominant hand was left undamaged. it IS everything to me right now. this whole thing simply showed me that no matter how truely bad you think things are, they most certainly can always be much much worse. so be thankful for what you STILL do have, and what is NOT actually occuring in our lives that just 'could'. it just does really matter.

    i cannot 'do' alot anymore, esp even think about working a job? i just am not reliable or things can change for me in a freaking heartbeat from one hour/minute to the next with many symptoms and insane off the wall symptoms from tract damage within my cord? and of course that ever present crappy pain that just NEVER ever leaves me or goes down with certain pain syndromes too? i DO honestly feel like at times, i am being 'assaulted' by this sick pain that never ever stops for me in specific areas. thankfully at least some of my pain i DO have some real control over.

    i was actually given the little booklet about applying for disability benefits the day i was discharged from the rehab facility? my my now THAT was so encouraging, lol.

    the bigger picture here NC, is what just "can disable a person" esp the emotional and mental toll too, not "just' what we have wrong or true disabilities really DOES matter as well with ssd? it was not until i found my "intra operative monitoring notes", not "just" my NSs op notes from my surgery where NONE of my actual major damage was mentioned in, that showed exactly when and what nerves were damaged during my surgery and esp the needed psyc consult with ssds OWN doc that i was finally awarded benefits that second time around.

    what zleeb described is total impact upon his own body and the combination of the mental/emotional toll that his situation just is taking? it IS that real overall picture that does get taken into acct. at least that is what i have gone thru and i know other people in my pain and SCI groups too that have had the very same types of experiences and are now on the more extreme end of the depression that can come along for the ride when just trying to "manage" out of control pain every freaking minute of the day, and what that, combined with the actual whole 'us' picture with our mental status too keeps us FROM being able to actually even "do' for ourselves too? all of the 'losses" that also come for the ride when you just ARE truely suffering everday and also any real disabilities that just will NOT even allow you to actually 'do' certain things anymore, really DO and have for me, taken a major toll, physically, mentally and emotionally. just imagine your spouse having to 'cut your meat for you" in a restaraunt like you were a five year old simply because i had not "relearned" with what is missing in my L hand to even BEGIN to do that type of "both hands working together" types of tasks at that point? it actually took me MANY months of "practice" to even be able to do that one really "taken for granted" before this type of 'task myself. its all a very 'humbling" experience as we lose what we once were and just 'did" without even thinking about what that one thing actually 'takes' us to do? i KNOW i am not the only one here who has had to go thru THIS sick part of suffering with disabilities and what our CP simply creates for us to have to accept and deal with over time. and it IS usually that 'ongoing' crappy stuff that ends up creating the most impact on our mental and emotional status, usually resulting in at least some form of very real depression.

    i also have an ongoing untreatable type of kidney and liver disease that WILL at some point definitely require a kidney transplant, and we are not too certain about the liver yet. that will be found out over time. i really have no hope for my future at times NC, when everything really gets 'thought about', that 'bigger picture'? so i try not to 'go there'? one day at a time, ya know?

    but initiating paperwork towards the actual ssd process and accumulating ALL of your own ongoing medical records and what the docs you are seeing are saying about you too REALLY do matter to just 'get'. i found a TON of things missing in my files from certain docs along with out and out mistakes and missing real diagnosises too when i got my records only AFTER i had been turned down that inital run? i was just stunned at what ssd 'only' had to go on when I got my own records. so now, i routinely obtain ALL records from every single doc/surgeon/specialist like at least once a year,depending. ONLY becasue of what i did NOT see when i had applied for ssd,and got them AFTER the fact when anyone who is attempting to apply really NEEDS to obtain every single scrap of documentation of conditions from every single doc,well before you start. this just allows YOU to go thru and find missing info or mistakes and get them all CORRECTED well before ssd obtains them?

    i simply 'assumed' that all my "stuff' was in them and all correct when it was NOT at all the case. and the VERY crucial for ME to prove nerve loss(despite many docs confirming it upon 'their evals of me",they STILL NEEDED that ONE missing document, pretty sick actually)the missing intraoperative monitoring notes was also missing from my main central file at the dang surgical hosp where by law it should have just been and no where to be found. that one i had to actually play flippin detective to finally track down and obtain, and on a very limited timeframe of the 60 days you get to appeal an ssd decision? the 'reconsideration" phase? that is where i finally won my case.

    but doing all the 'checking of" your ongoing medical files that will be used by ssd if anyone should decide they just really are at that point where they have to apply, seriously NEEDS to be done WAY before you even decide to go that route, most definitely. we have no real clue as to what our docs are stating in our ongoing clinic notes in our own medical files unless we actually obtain them and go thru them ourselves to check. you just DO need to have all dxes documented,and any possible issues,and trust me, the percentages of our own medical records containing any errors is EXTREMELY high from what i was told AFTER my whole records nightmare. even if any given person who is seeing docs in an ongoing way is not actually applying for ssd, they STILL should be obtaining all records from every single treating doc or any surgeons office in an ongoing way. you just have to be checking periodically for ANY potential problems or outright errors IN your OWN medical records which in some cases WILL or can impact your own level of care too.

    this also 'allows' us as patients to actually read about what our own docs actually 'feel' about our conditions too since they have to include 'their impressions' in every clinic note entry they make post appt with any patient. and that too is important if they are esp somehow not 'getting it' as far as how WE feel about them?

    sorry to go off on you here NC and everyone else. but god, getting your own records is huge in our ongoing care. and also allows us to KNOW what our own docs think too.

    but if you do honestly think/feel in your own world that ssd IS now what just IS your realistic next step in your life, plan ahead and check everything. sorry this was sooo long. marcia
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
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    Old 12-19-2010, 12:32 PM   #11
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    Re: What is this board supposed to do?

    Zleeb-

    You say 'I need to talk about my meds and why aren't they working.' Are you referring to your Doctors or this Health Board?

    There seems to be quite a bit of flexibility on this board. As long as you are more or less sharing your experiences (which can include drug names and dose, and effectiveness etc...) and not promoting or discussing activities that are obviously not intended on this board -So, you can pretty much let it rip!

    ~

     
    Old 12-19-2010, 07:30 PM   #12
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    Re: What is this board supposed to do?

    Nochange

    Just out of curiosity, why do you think that going to a psychologist would be "staining" your name?

    Feelbad

    Hi from a fellow NC'er, I'm in CH.

    Kat

     
    Old 12-20-2010, 02:13 PM   #13
    allanbruce
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    Re: What is this board supposed to do?

    I just wondered if you have a carers pension in the US? My niece is disabled and her ex partner used to be classed as her carer and then was able to be on a carers pension and receive all the benefits like free health care and extra payments for electricity, phone, car registration discounts etc etc. Also he could do part time work and even get respite himself occasionally. As you are caring for your wife and mother you would think there would be some help?
    Just a suggestion as here that is what I would do if I couldn't get a disability pension. I don't know how the system over there works though.
    Allan
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    Old 12-20-2010, 06:44 PM   #14
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    Re: What is this board supposed to do?

    I don't think we have anything like that here....or the closest thing would be Social Security...but i'm not sure how that works for people who give care.

     
    Old 12-20-2010, 11:21 PM   #15
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    Re: What is this board supposed to do?

    Some thing I learned in life and in my experience in AA was that instead of telling someone what they should do or take, that we talk about our experiences and what has worked with us and others can take from that what might effect them or what might feel like it applies to them in some way. Sometimes we here something someone talks about and can feel a similarity and find their experiences are relative to us.
    So it is sort of take it or leave it as applies to your circumstance. So I don't always use anyone's name as it may apply to another.
    Allan
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