panicking re: disability review: need support

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by artyreader, Jun 21, 2011.

  1. artyreader

    artyreader Member

    I just wrote a long post and accidentally deleted it!!!! I am in too much pain/fibro fog to write it again-GRRR Anyway, I will try to encapsulate--just need supportive words and if anyone has had similar experiences--I've been on SSDI/SSI for about 14 years (FMS, arthritis, anxiety,panic, depression, thyroid and other disorders) and now I just got this form in the mail from Social Security, re: keeping my benefits current or not. I am so scared I might lose my benefits (it's a simple form, and I hope they'll not decide to do a full medical review because I feel I will have a nervous breakdown and if I somehow lose my benefits I will end up on street, homeless (very poor subsisting on SSDI, and SSI, the SSI here in Calif suffering yet another cut) I'm not sure if my doctor, who has been treating me for fibro all these years, will categorically say I can or cannot work I am trying to type up some stuff for him for next Monday but I'm in so muc pain feel so scared--help! Good thoughts, good words, any info that might set my mind at ease welcome! THANKS
  2. AuntTammie

    AuntTammie New Member

    from what i have heard the review is usually not that bad if you get the simple form.....and also they have tiers re whether or not you are expected to recover - if you have gone this long w/o a review they lost likely do not believe that you will recover
  3. artyreader

    artyreader Member

    for your kind words. I just realized today (very embarrassing!!) that they might've approved me for SSDI 14 years ago only on one of my many health problems: I've always just assumed it was the combo of physical(FMS, arthritis, etc) and psychological (anxiety, panic, depression) but I heard something today that maybe I need to call Social Security and ask them:
    was I only approved on one of my health conditions? Should I call them and just ask? That'll help me when i meet with my rhuematologist next week--what to emphasize when I talk to him because right now I can't focus and feel overwhelmed with paperwork,deadlines, and fear of losing my only tiny income in this world, my SSDI and rapidly dwindling SSI (at least here in Calif), and am afraid that
    if it is mental only, that he, treating my fibromyalgia all these years, is not a psychologist (and my experiences with mental health professionals over last several years have been HORRENDOUS
    I can't afford a good therapist, and the ones in this county are really incompetent and I can't go to the county mental health CLINIC (i WENT FOR ABOUT TWO YEARS AND IT WAS A WASTE OF TIME AND EXACERBATED MY PANIC AND SEVERE ANXIETY ISSUES as I have intense anxiety disorder and the schizophrenic scary guys that are treated there are too frightening and terrifying for me--I won't go back but have no where else to go
  4. Scapper

    Scapper New Member

    I've been on SSD for 16 years. I too am not sure on "what" they decided I was actually disabled from.......at that time, I put down both my physical and mental issues and when I rec'd the letter of approval, I wasn't sure on the why's of it, but never questioned it.

    I rec'd my first request for information (form you got) in 2006. I too was a wreck! I put down the docs I was seeing at that time and I shortly after rec'd a letter saying they were not going to do a further review at that time.

    Since then I've rec'd this same form every 3 years. I haven't been requested to receive a full medical review as of yet.

    Each time I get rrrrrrrreally nervous, because like you, I would be completely lost w/o this income. I also don't have the greatest docs supporting my disability......CFS is difficult to "support."

    My advice, fill out the form w/ all of the docs you are currently seeing. In the box that asks whether you were told you can work -- "no."

    My opinion and what has worked for me.

    Good luck!

    Once I mailed the form off, my anxiety over it all, lessened greatly.......do what you can and then let the powers that be handle the rest. The longer you hold on to the form, the longer you will feel anxiety (at least that's the way it was for me).

    Hope this helps.

    scapper
  5. lea

    lea Member

    Where do you put your Dr.'s names (I do not believe the form asks)?

    thanks a lot

    Best,
    Ann
  6. AuntTammie

    AuntTammie New Member

    most likely they approved your dis on the basis of the physical stuff or the physical plus the mental health stuff bc they almost always assume that if someone is approved based solely on depression or anxiety that they will recover and as such they review mental health claims more frequently....since it has been this long, I highly doubt that they approved you solely based on the mental health stuff
  7. Mikie

    Mikie Moderator

    That is likely the last you will hear from them. If they want more, they will contact you. This is probably just a routine formality. If not, you and your docs can easily establish your inability to work. Please don't worry about this.

    Love, Mikie
  8. mbofov

    mbofov Active Member

    If you've been on SSDI for 14 years and this is your first request for a review, It probably means they do not expect you to recover. I think generally the longest they go wtihout a review is 7 years.

    This year I got my 1st request for review (have been on SSDI for 7 years) and I was nervous, but filled out the form, put down why I couldn't work, I think there is a space on the form where you name your doctor, and then some 4 or 6 weeks later I got a letter from them saying they were not going to conduct a review at this time.

    So I don't think you have anything to worry about. Do list all the reasons you can't work: FM, arthritis, depression, etc. I don't know why or how I was approved either, strangely enough.

    So right now you don't have to worry about getting your doctor to sign anything and hopefully this will be the end of it for the next 7 years.

    Mary
  9. Scapper

    Scapper New Member

    On the 2nd page after question 6, they give you 5 lines for "further information."

    I put down name of doc and reason for seeing them.......limited it to 1 doc per line.

    Any further questions, please ask.

    scapper

    p.s. make a copy of this before mailing back......I've been getting them every 3 years now (I think this is their new formality -- atleast this is the way it's happening for me).
    [This Message was Edited on 06/22/2011]
  10. Mikie

    Mikie Moderator

    That with the govt. trying to cut services, the people at SS are trying to show how productive they are to keep their jobs.

    Love, Mikie
  11. artyreader

    artyreader Member

    Apparently, I got one of these in 2009 (so they say).
    ANYWAY, thank you for info and reassurance. ONE MORE QUESTION, IF I MAY: because I am stressing so much about this, and am not sure if my rheumatologist (who is retiring in August) will support me or not (He DOES know and treat me for fibromyalgia and related conditions--i.e. severe chronic insomnia,etc) and because this form specifically asks if you've discussed with doctor whether or not I can work (I'm not sure he'll necessarily go as far as to say that), )but i'm not sure--I look much healthier than I am AND i WALK TO GET AROUND, THOUGH IN MUCH PAIN AND NOT ALL DAY OF COURSE, DO YOU THINK I SHOULD JUST SEND THIS TODAY (iT'S DUE BACK EAST VERY SOON, AND I;M IN CALIFORNIA) BEFORE MY DOCTOR'S APPOINTMENT? nEXT tUESDAY? tHANKS, ARTY
  12. Scapper

    Scapper New Member

    My opinion on this one and what I personally did b/c it is true: CANNOT WORK

    As far as waiting until you see doc, if you have sufficient documentation to fill out this form, meaning, have you seen other docs over the last several months? If so, then that should be sufficient to fill in the 3 lines they give you for "recent visits."

    If you haven't and your dates are "old" for question 5 -- then I would wait until Tuesday so you have something more current.

    You have 30 days to get the form back......just make sure you make it on time.

    You don't want to red-flag yourself in any way.

    Good luck!

    scapper
  13. day2day

    day2day Member

    I got the letter, had my therapist include a letter. I forgot to mail the form out and received another letter to mail it in. I lost my envelope so they had me send it in to my local office. They lost my form. So I was told to sent a copy in, I sent the copy in and got another letter stating copies were not allowed and sent me another form. By this time about 8 months had passed. I was suppose to have a decision in 12 weeks, and forgot all about it. My son gets ssi based on my ssdi. when I filled his form out I made an error and said I WAS a CONVICTED FELON, I got a phone call From SS, I was ready to hang up on her thinking its a scam, but she said to me I am calling because you checked off that you were a convicted felon and we just want to make sure it was not a mistake......I laughed and said no. She laughed and said I didn't think you were. At that point it dawned on my I never found out if I was approved or not, by that time about 4 or 5 months passed when they were suppose to have my decision. She looked into it and said to me....they decided not to go forward with your review......

    My guess is they must think I am a totally nut case ( which I am sorta). Since then I have had one more reveiw and this time I received a letter stating they were not moving forward with the review.

    I would not worry about it too much, especially if you follow up with your doctors on a regular basis, and if any new symptoms , or conditions have popped up let them know.
    Good luck
  14. Puddleglum

    Puddleglum New Member

    bump to help arty
  15. Mikie

    Mikie Moderator

    It makes it appear that people just get tired of being unemployed and seek disability instead. I think there are a lot of people who have been pushing themselves despite becoming less and less able to work. This what I did until, one day, I simply could not continue. They have a reason to file but I think if they have been working and only file after they lose their jobs, it will be a difficult case to make.

    Unfortunately, SSD only has funds to last until 2017 as it is. Also, all these new filings will cause delays in getting approved for everyone. It is one thing to be able to overcome a physical disability such as being wheelchair bound and quite another thing to not be able to work because of constant pain requiring taking opiods, combined with fatigue so great that one is bedridden.

    Yes, there are scofflaws who try to get others to provide for them. This is not the case of those of us who would rather be working but can't because of our illnesses. Many of us had to give up jobs which we loved and which payed very well, a hellova lot better than SSD! Again, unfortunately, SS tends to view us all as scofflaws and they put up such huge barriers to our getting the help of the insurance fund which we paid into and now need and deserve. I think anyone in the process of trying to get SSD should get the help of an atty.

    I think if a review causes SSD to revoke benefits, one should get an atty. but this usually doesn't happen if nothing has changed which caused approval in the first place. There is now some public sentiment against government workers by certain politicians and that my be driving the reviews so that they can show how valuable they are and how they are trying to save the taxpayers money.

    One really lovely young woman contributor to cable news said that with all the talk about SS and Medicare, she came home to find her mother crying at the kitchen table. People are very scared right now with the economy in peril. It isn't just us on SSD but people on SS and people just under the "age 55" which is being bandied about when it comes to talk of limiting entitlements. I aged into regular SS after being on SSD and thought I could breathe a sigh of relief. Well, despite rising costs, we have had no COLA increase in three years. It is likely that our Part B will increase as the cost of medical care increases. I'm not resing easy and worry about my kids too. The govt. doesn't include the cost of fuel nor food in figuring COLA increases. Every time I go to the store, food has gone up. So where do older people cut? They stop their meds and eat whatever is cheapest. I saw it all the time at the store. Processed food is what is on sale and what older people, especially if they are sick, should not be eating it. Most have high BP and the salt content of processed food is usually sky high.

    I think we are all uneasy but we have to keep it in perspective. I know it's hard when we are suppose to cut our stress. Even older people who hate government and want to cut govt. costs are the first to say, "Keep your government hands off my Medicare." So, I think there will have to be some kinds of creative ways to save what we have all worked for and paid into. BTW, as much as someone on SSD might be tempted to become an activist, I don't think it's a good idea. Find someone else to speak for you. SSD would likely figure anyone who can be an activist can work.

    Love, Mikie