how do you feel about social security disability?

Discussion in 'Fibromyalgia Main Forum' started by bewell4, Feb 13, 2007.

  1. bewell4

    bewell4 New Member

    of course, i started this because i have so many unexpressed mixed feelings...

    I have applied and am waiting to hear if i will be accepted or denied. . .

    I want to feel hopeful or grateful or happy; but I think i just feel sick and ...well, all the reactions are so mixed up that its hard to sort them out!

    i appreciate any response :)
  2. charlenef

    charlenef New Member

    ifelt crushed after my first denial now it is almost two years later and im still waiting for a court date i really dont know if i will be turned down agian and im afraid im going to make a fool of myself because im inbed 22yrs a day and if im out more than a hour the pain is unbearable i start to shake and just want to lay down sorry i couldnt be of more help charlene
  3. bewell4

    bewell4 New Member

    at least (i guess!) i was lucky enough to know before hand that i will probably be denied...even 3 times or more. i know many people who have been trying for years. and i plan (though it kills me to have to pay* to get money! when i am so poor! oh well...) to get an attorney as soon as i am denied. unless a miracle occurs and i get it the first time.

    it was hard for me to ask...i keep hoping, i guess i keep hoping that i will find something* to fix this, and be able to go back to work, to be independent, to have abundance again.

    the poverty is one of the HARDEST things to live with. anyone agree/disagree??? any positive or collaborative comments?? :)
  4. charlenef

    charlenef New Member

    i went from running my own daycare to bedridden really quick i still keep on getting worse i can no longer drive and to top it off no money im really good with the bills though there is no extra money for things for my kids it makes me feel really bad but making the mortgage is the most important
  5. padre

    padre New Member

    Being disabled for me has been a full time job. Seeing doctors, filling out forms, doing this and doing that. Because of my doctor's help, it was not hard to get SSD.

    On another level, I hate it. It goes against my self image of can-do guy that leaps tall buildings at a single bound. When they used to call CFS/FM the Yuppie flu it was right on for me. Yuppie all the way.

    It also stinks to be dependent on someone else or to take a cut in pay.

    But, then I began to think about what other things I can do. Even little kindnesses that I have time to do. We have lots of grief, anger, disappointment, and other garbage to deal with. It is hard work.

    For me, disability as a label made me less of a person until I asked myself 1) Am I disabled? 2)Could I do something every day? 3) Does blame help anything? 4) What kind of lemonade can I make out these here lemons? 5) Did I pay in to SS for 36 years? -- Those are my questions, what are yours? I decided that I have to accept that I am disabled and it stinks. Where do I go from here?
  6. cct

    cct Member

    I feel pretty angry about SSD.

    The govenment can spend Billions of dollars on the people in Iraq, but it cannot give me enough to live on?

    I am an American citizen - born and raised. I worked, I payed my taxes, but I cannot receive a return on any of the money that I contributed to the Social Security System because . . . . . .

    Maybe I need to move to another country so that I can receive foreign aid !
  7. cjcookie

    cjcookie New Member

    people would be on it who don't need it. I hate that it takes so long for us that deserve it but there has to be some system and I really don't know how to make the system better.
  8. jipsieyes

    jipsieyes New Member

    I was a single mother, professional computer programmer (ahhh, detail, detail... and I remember being a whiz at anything with numbers!) earning upwards of $55k a year. I danced every weekend, played actively with my son and rode horses every other weekend, always had a date for Saturday night, drove a new car (Camaro) and was saving for both a house for my son and I AND his college fund...
    BAM! went fate, as the shiny red Neon broadsided me one afternoon as its driver happily ignored a stop sign...
    I, too, had proof: several fractured lumbar AND two shifted (misaligned -- if they were supposed to be in the 12 o clock position, they were now instead at 10 o clock) cervical vertebrae. Stenosis of the spine set in within months, apparently a potential condition that now became awakened, rampant... No matter, I was determined to get back to work, so put off filing for SSDI for over 2 years, losing my car and home, my savings and goals and dreams, in the process... I wish I had filed SOONER, and then wish I had hired the SSDI attorney right away, too. I even almost lost my son as unsympathetic others decided I was simply lazy and not "wanting" to work anymore and care for ourselves! Nothing further from the truth... FInally, after being denied TWICE during the almost 2 years from initial filing, I hired an attorney, and after one more year of denials and then a Hearing, I was approved. And this for a patient with proof! Total, almost 4 years from file to approval, total of about 6 years from car accident that ALSO triggered my horrendous FM into life...
    Being a type A personality who used to put in 70 hour work weeks AND took work home with me to do while I was burping my infant son (went back to work ONE WEEK after he was born -- I had no "daddy-help", and my mother passed away years before), my reasoning behind waiting so long to apply for SSDI/SSI was more of a PRIDE and DENIAL thing than anything else. Don't fall into that, however noble your work ethic: bills have to be paid, a living has to be made, especially when you have to keep a roof over your head as you struggle to get by, medically and emotionally and financially, with injuries or illness that get worse instead of better. I just wish there weren't so many people with a "back ache" abusing the system, or using those "disability lawyers" who advertise on TV (their commercials just SCREAM for the wrong attention), to give those of us with FM and other auto-immune "hidden" conditions a bad name... Keep a daily "pain and struggle" journal, document all receipts and mishaps related to your poor health (missing work, losing your job, humiliation when in public, etc.); Find a good reputable SS lawyer who DOESN'T advertise like a scam artist; seek help for yourself from not just one doc, but several practices (primary, specialists in pain, phys therapy, arthrtis, etc.) and see them REGULARLY (keep asking questions, try new treatment, etc.); AND attempt to work several times a year (even though you KNOW the boss will end up letting you go or firing you soon, due to so many missed days for doctor appointments, illness, etc. -- the attempts show you WANT DESPERATELY to get back to work but really ARE "UNable" to keep a job). Every single one of those items, above, came into play at my ALJ Hearing, and I know, without a doubt, that it was only because of the years of documented (and failed) struggles to "get better" that I was finally approved... Hope this wasn't too long, and hope some of my suggestions help another...
    [This Message was Edited on 02/14/2007]
  9. shar6710

    shar6710 New Member

    I know what you mean about mixed feelings.

    I think if I get approved I'll be a little depressed just like when I had to leave my job. I was relieved not having to worry about my work but I cried because it was a sign that I wouldn't be well in the forseeable future.

    I think the same is true about SSDI: on one hand, its my money and I feel like I deserve it, but on the other hand it is just one more reminder of just how sick I am.

    I do think more could be done to determine our level of disability. Hopefully some of the new research will help change the regulations of how they evaluate CFS for disability.

    Good luck on your application,

  10. kvrose48

    kvrose48 New Member

    Applying for disability is a tough decision. My battle began 1 1/2 years ago after my Total Hip Replacement. When I tried to return to work 4 months later- I was only able to tolerate 1/2 of what I was working prior- so that reduced my income tremendously. Then this last November I had to go on SSDI due to exacerbation of my condition- they don't know if it's Lupus or CFS. I am planning to go back to work April 1st- at 1/4 what I used to work. That will be difficult to financially tolerate.
    I have been encouraged to apply for SSD but don't feel ready to 'give-in' or 'give-up'. Maybe I just don't want to go through the 'process' of apply-deny.
    Do those of you who have applied recommend a lawyer before applying- or after being denied?
    Can recommend a couple of great books on dealing with chronic illness: FULL CATASTROPHE LIVING; AND KITCHEN TABLE WISDOM.
    Happy Valentines Day All!
  11. bewell4

    bewell4 New Member

    i have read and appreciated all these posts...the thing that's coming up for me now, is how much work it is to apply! i understand and sympathize with why they need proof...and at the same time, *i am so sick that eating is a chore*! it is overwhelming and very stressful to think of gearing up to take notes on everything, try to go back to work, go to doc appts (i do, but i really have to pace myself...i think i am in the midst of flare even harder to not overdo and be really bad off!)
    anyway, i am just ranting here. i appreciate the encouragement and tips.
    feel free to keep adding...i will check back. :)
  12. Ginner

    Ginner New Member

    This board has been a godsent..I thought I was alone!! No one I know has fms.
    I had to give up a job that I loved last month and I am having "a time" dealing with that. By the time Jan 5th, my last day rolled around, I was laying across my keboard trying to "think and pray" my way to I am, I guess ..grieving..thank you for listening!
    I would like to just sit at the computer,read and learn but I am getting closer to the keyboard as I type here(alittle humor left I guess, who knew?) Anyway, I have been printing out and laying down and reading, and replying later, hope you don't mind.
    I hope I can become an asset to all of you also one day soon.
    You are all so kind to share!
  13. scruffysmom

    scruffysmom New Member

    I too struggled with deciding to go for SSD. I finally quit work after changing jobs twice and decreasing working days to on call only. Even then I couldn't work. So, finally gave up and applied, was denied and didn't go for it at that time. I moved to Tennessee, filed again, and was advised to go to an attorney after receiving my first denial. I found an excellent attorney thru this website, and I do believe he made alot of difference in my case. He had actually won fms cases and was quite knowledgable and interested in fms. I also got an independent disability evaluation on my own, at the attorney's request, which really swayed the judge. It cost alot, appx $650.00, bu t was worth every penny. Without it, I probably would not have won, even with a good attorney.
    So, please don't give up. That's what they, SSD, want you to do. Just give up after repeated denials. There is no way around it, you have to get a good attorney and an independent evaluation.
    Hope this helps and good luck!
  14. jipsieyes

    jipsieyes New Member

    Wow - I could have written your post! I,too,in the past year or so,have been spending more time researching a general 'why is this happening to so many people so suddenly?' quest than my own personal case... I am half-convinced we are being slowly poisoned by the government (via water? chemtrails? some kind of magnetic or low-threshold "hum" exposure, ala HAARP up in the arctic wilderness? aspartame? It could be done so EASILY, so many ways...) so they can overview the results (new FM/CFS per region/area, severity, prescriptions and dosage,etc., in addition to the impact on health care and regional insurance or state funded claims. No,I am not oneof "those" conspiracy theorists, but after dealing with such astounding pain and life change due to a disease I never heard of until I had it (2000), and discovering,over the past years of nonstop research(no one else will care as much about finding a cure or answer to my condition than I, after all) that so many others are wandering and wondering, as I, as to how this could have happened to us, and just in the last decade,especially, well... it makes one start to wonder. But I don't advocate paranoia, either. That would certainly HURT more than help. But since September 11,2001, I'm more inclined to believe a LOT more "strange" things than I used to...
  15. Iamnotmyillness

    Iamnotmyillness New Member

    I agree with everything thats been written -- the mixed feelings, etc.

    But here's my few thoughts:

    First, every doctor has a dea number so that the government can monitor how often and how much of certain classes of drugs are being prescribed by a certain physician. Why cant they use those numbers to monitor how often physicians are referring patients for disability? I would assume that a team of highly respected physicians would be able to come up with guidelines that the agency could use to assess how many cases you would be likely to see from a doctor of a specific field: ie: you might see more patients applying from someone who specializes in the treatment of cancer vs. a pediatrician. Then, based on those guidelines, review more carefully cases where the treating physician is outside of the # of expected patients by more than lets say 10%. Or for example, with FM or CFS/ME, approve all cases where the person has x number of physicians who are willing to state for the record that the patient is DISABLED. Doctors spend a long time getting their license, I cant imagine many of them would risk it by saying someone was sick if they didnt truly believe the were. Then quacks out there would soon be caught by monitoring the physician id numbers.

    Secondly, they should eliminate the discrimination against those with higher education or those that are younger. In fact, in some ways, I think it should be the opposite. I have been told by 2 different attorneys that the fact that I have a college degree will hurt my case. I have also been told that because I am 40 and because I make 40K at my last job which was an office job, those factors will work against me as well. Why is that? If someone is making 100K, doesnt it stand to reason that this is the type of person LEAST likely to fake FM since their SSDI payout would be DRASTICALLY less than their current income? In fact, it would even be a drastic cut vs. what they could probably earn working part time. Conversely, if someone is making lets say 20K, went right into the workforce instead of losing 4 years of income to go to college, and is doing a physically demanding job, that person IMO would be the more logical person to look at more closely, since they would not be taking a huge paycut moving from what they were making to disability.

    Third, allow for a higher number of approvals and more expeditious processing of cases BUT increase the penalties for fraud and use the medicare claims as one way to weed out fakers. Also, transfer manpower from the heavy review of cases on the front end to the heavy review of cases post approval. For example, my health is so poor that I need so many tests but cant get them if or until I win disability on appeal and get medicare. Then I need major blood work, an mri, an endoscopy, physical therapy etc. None of those tests/processes are pleasant. I have a feeling that most of you are in the same boat as I am, desperately needing good quality care in a number of areas for digestion, pain, headaches, etc. If someone gets approved and then immediately jumps on the opportunities that medicare affords them, it would be a sort of de facto indication that this is someone who is sick and is desperate to get better. If on the other hand, someone gets approved and then you see little to no use of medicare, or medical care that isnt consistant with what you would expect to see from someone with a particular disease, that would be a red flag to look at that case more closely.

    Finally NO money/benefits for illegals. If fact, how about this? If an illegal needs medical care, we offer to pick up the first 500$ worth of bills at a facility the US sets up and runs in Mexico. HA.
  16. momof471

    momof471 New Member

    I was out of work about a year and a half before I applied for SSDI. I just knew at some point I would see a doctor who could miraculously make all of this go away, or it would just disappear, well that did not happen. I have been written out of work from the beginning and my rheumy told me to file for disability. This is what we pay into the system for though. On another thread someone brought up that I might run into trouble , because of the kids, that really bother's me, its bad enough to be going through this and your whole family goes through this with you. Then to think that someone will throw your kids at you! Yes i have four kids, my youngest had just turned two when I got hurt by five days. All of our lives changed dramatically. I cried at having to push her into growing up faster, couldn't leave her in the crib because I couldn't get her in or out, no more down on the floor playing or picking her up and swinging her around, I'd have to stop the kids from running up to hug me because it killed my chest, where my original injury was. Sorry I'm rambling, but I think SS puts people through so much unnecessarily creates more stress, which means more pain. I resent not being able to do what I used to do, I liked going to work, doing a job and seeing the fruit of my labor, then I liked spending time with my family at the end of the day. Now, I'm stuck home doing a half-@#@ job here and my family having to do so much to help me get through the day. The SS system is designed to demoralize and belittle you and make you give up. Just my two cents.
  17. bewell4

    bewell4 New Member

    i have read some of your posts and appreciate the perspective/understanding i get from another mom. (i also identify with the comment about finally figuring out that this would not just one day disappear...ugh, so awful) i too, finally got it through my child's head not* to run up and knock me over with a gleeful, enthusiastic hug. because it hurt my back, and my whole body. i have tears in my eyes as i write this. i remember how relieved i felt when he seemed too little to comprehend my pain, and then his thoughtful look on the day he was (apparently) old enough to understand and as he assimilated my request not to run and hug me. i want to scream in rage and howl in agony... disability (i am on one hand, glad that i am not out on the street, so extremely glad that we might get it and i will be able to survive and provide for my son, but on the other hand: ) is like a kick in the gut. its funny to me - i hear the pain of the mom who does not want to be home, and wants to work... ha! i want to be home! but how could i possibly explain that my application for disability is not some scam to be able to stay here. that is insanity!! lunacy!! i don't want to stay home in the state i am in! this is no walk in the park! it is near-constant agony to not be able to laugh with my child, and swing my child around, and make meals with ease and without pain, and get out there and be social and spend quality time with a partner, and find a good man to be a father to my son! not everyone may agree with all of my goals, but i hope this will at least touch you with the general as a stay at home mom with chronic pain is like a life sentence! torture! besides, aside from my basic value about staying home and giving the bulk of my quality time and love and energy to my child and family...i would actually *much* rather be working!! i hate* being poor! i think we would both be better off if i could get *out of this house* and work! grrrrr!!! aaaaaa! sigh.
    [This Message was Edited on 02/16/2007]
  18. momof471

    momof471 New Member

    My heart goes out to you! For everything I am mad about or am hurt because I have lost, I do know that I am blessed in spite of all of this. My husband is willing to work 80 hours per week, for the past 3 years and until SS comes through so that my children and I don't lose the roof over our heads and I have the money to be able to go to the doctor and get medicines. Its tight, we give up alot. I feel so ungrateful when I say I don't want to be home. I love my family so much, I just feel I gave up part of me. Well, what hadn't been taken away from me already by daily pain. I'm just scared that some ignorant judge who doesn't know me will look and say she has four kids, she's a stay at home mom, that's not the case. That makes me angry and scares me. I know people who have said I should be grateful that I can stay at home, but these people look at me from the outside, I look normal, I don't gripe and complain. They don't know what this illness does. It was not a choice, if it was I would feel differently. Does this make sense or sound totally ungrateful? I'm rambling I know. At the end of the day I thank God for all the blessings he has given me and well, the things I don't understand that have happened, they are part of a larger picture that I don't quite understand yet, but one day I will. Its nice to find someone to relate to!

    God Bless

    PS As time goes on I find I don't really mmind when my children ocassionally forget and give me that enthusiastic hug, it makes me realize, in spite of everything I an my family have been through, I'm still doing something right. It may make tears come to my eyes, but they are tears of happiness mixed with the tears of pain.[This Message was Edited on 02/16/2007]
  19. BobinGermany

    BobinGermany New Member

    I think the US Social Security Administration is a poor excuse of a joke. Let me start though by saying that I am so very happy for those who have been approved! This is the start of year number FIVE for me and I am still waiting. Was turned down once before the diagnosis of fibro, etc. Refiled and was turned down because they had the nerve to tell me all of my problems were caused by alcohol abuse. Some of the problems are FM, CFS, Deg arthritis, bursitis, chronic pain symdrom, panic attacks, severe depression, social phobia, and around 6 other problems. I have 3 attests from doctors saying that I am totally disabled. And I DID NOT ask for benefits due to my use of alcohol. Also, my alcohol abuse was between 4 to 6 beers a day. I never missed ONE DAY of work because of it when I was able to work. I voluntarially <sp> stopped all alcohol use on June 1 2006 and the symptoms of all of my problems are still there as bad or worse than they were when I was drinking. I have now advanced to Morphine for pain relief. I wish that the people that turn us down could walk in our shoes for 10 years or so. I am so MAD! I recently did alot of reasearch on the alcohol issue as it applies to social sec. I will win this time. What they did was against their own rules. Like CCT said we can send billions to fight a war and we have to fight to get back what we worked for and paid into the system. I have even read about some people on here that have to decide between food and pain meds. Can anyone tell me what is wrong with our nation when it comes to caring for it's own? Oh, by the way you can see from my post that I live in Germany. I have been here 6 years but worked for over 30 years in the US. I worked here for maybe 2 years doing some consulting and voice overs in a studio for German training films that needed to be dubbed in English. I applied for German social security and they we appologizing that it may take up to 4 MONTHS to begin getting a check! What a difference! It won't be much money but it may pay for my medical insurance.

    Sorry for the rant,

    [This Message was Edited on 02/16/2007]
    [This Message was Edited on 02/16/2007]
  20. bewell4

    bewell4 New Member

    i have been sitting down to respond to this many times, hard to put into words my reaction, but i really wanted to say how meaningful the phrase/intent "my heart goes out to you"...i do have it hard! i don't say that with a whine, and i rarely if ever really get to cry about it, because so many people just cant imagine...sort of like trying to explain fibro to a "healthy"...i am the only mom i know who is not only single, but also chronically ill and not only that but also never got financial or other support from the 'dad'. i was thrilled to have a child, but it has been such a fight for much work and grief. and struggle financially. bla, bla, bla...hard to get myself to shu- up once i get started! lol. so, anyway, thank you!! and i am truly glad that you* do have support. i wish all mothers (especially) had love and support!
    oh! and, i wanted to make sure my grief and comments about wanting to stay home, did not come out sounding judgmental of moms who want to go back to work...on the contrary, i support choice for everyone and sheesh...especially, i understand that every parent and child is different...frankly i got one that sometimes i think we'd both be better with me working. he is utterly beautiful and precious...just very energetic, high social needs and lots of talking and jumping around (in other words, a healthy 4 year old..sigh). and i am very exhausted, plus being easily overstimulated (lord, has anyone else been trapped in a room with a talkative 4 year old, for 12 hours?! multiply that by daily for 4 years...) :)[This Message was Edited on 02/18/2007]