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  • Still fighting..pray for me

    I'm 5 years in, and still fighting for Disability. I was turned down the first two times, then, even though the State's own witnesses testified that I was disabled, the Judge (3rd try), turned me down.....it was her first Disability case.

    DO NOT LET THIS STOP YOU IF IT HAPPENS TO YOU.

    I appealed again; appealed the Judge's decision, which you can do: AND THE BOARD AGREED THAT THE JUDGE WAS MISTAKEN.

    Now, the case has been sent back for review and I AM having to essentially "re-apply"; do all the things I had to do when I first applied.....which is a pain, but IT AIN'T OVER. I can't say I'll win......the back payments would probably make them cry to pay, but, it's still going.

    So, if this DOES happen to anyone else, PLEASE don't let someone, even your lawyer (who suddenly demanded money from me and quit because she said I couldn't win), tell you that it's over. KEEP TRYING.

    I may lose. Maybe even probably, at this point. But I AM TRULY ILL and will not have someone tell me I'm not. Sometimes when your ill people treat you with very little respect...I think you must demand it, or they'll just run right over you.

    Updates forthcoming if a party is in order....

    Boo
    Diagnosed IC: Oct. 2005
    Other conditions: Fibromyalgia, Migraines,BiPolar Disorder, degenerated disc in back & Scoliosis


    MEDS FOR IC ONLY

    Oxycontin, 40 mg 3 x's daily
    Nerontin 1600 mg daily
    Cysta-Q
    Prelief

    MEDS: COEXISTING CONDITIONS
    Lithium
    Depakote
    Clonopin/Xanax
    Ambien
    Phenergan
    Butorphanol Nosespray

  • #2
    Praying that you get the justice you deserve and they recognize your illnesses. Hugs to you.

    Comment


    • #3
      I will also pray that you get the justice that is deserved. Is this case a problem because of IC is not recognized as an illness that is disabling?
      Frances

      Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

      Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

      Other conditions: Migraines, allergies, mild IBS.


      "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

      Comment


      • #4
        Is this case a problem because of IC is not recognized as an illness that is disabling?
        Well, yes, that has been an issue, but there have been many more. Even though TWO of my Urologists wrote lengthy letters regarding my IC and their opinion that I'm 100% disabled by it....and then the medical expert who testified at my hearing agreed.......the Judge STILL ruled that is wasn't an issue.

        She said that if I stopped taking all the medications I was on (I'm also Bipolar and take Lithium), that I should be fine to work within weeks. It was a shock and an insult to see someone say something so ignorant.

        I could go on and on about the list of issues that she completely misunderstood (she'd claim that a doctor had said that my "conditions" (including BiPolar) were "treatable with medication" and that THAT meant that I was not impaired if taking medications. The appeals board even sighted her on that, saying she had completely misunderstood what the doctor meant). The Appeals Board agreed that my case needed to be re-examined, sighting a list of 11 issues where the Judge was flat out mistaken or didn't seem to have even read the doctor's opinions correctly. Her comments on my mental health issues were staggering. I was in-patient in a mental hospital on one occasion and she claimed I was there for "Substance Abuse" and that I recieved "substance abuse counseling". THAT IS CATAGORICALLY UNTRUE. And I've read the records from that hospitalization now, and it says no such thing. I wasn't even counseled for anything, as I was in only 24 hours. The ONLY mention of drugs was during my intake interview I admitted to having tried a few recreational drugs while growing up....THAT WAS IT......so, the listed, among many other things, as concerns "possible polysubstance use"......and with that she just ran with it. She did it on several other occasions as well, but I won't go on; you get the gist of it, right? She also never brought up ANY of the reasons she ended up turning me down for during my 2 1/2 hour hearing, which is yet another reason the Appeals Board sent it back. I SHOULD HAVE WON, simply due to my BiPolar Disorder alone, so when I lost I literally almost fainted from shock....as did the 7 doctors who had all written letters claiming I was 100% Disabled from 3 different conditions (completely disabled from each condition on it's own, much less together).

        It was her first Disability case ever. North Carolina, where I am, is in the top 10 of the most backed up in Disability claims in the country. I first filed in 2006, was turned down immediately, appealed, was turned down again, appealed, went before THAT Judge, was turned down, appealed to the Appeals Board....and here we are....nearly 6 years later....it's taken THAT bloody long. I honestly think this happened because it was her first case though, although there is simply NO EXCUSE for making up your mind about something, then making everything fit that agenda, which is what she did.

        So, I soldier on. I'm very scared now though, as I dont have all the doctors I used to; I haven't been about to work in over 5 years and couldn't continue to pay for all those doctors; so I condensed. My Primary now treats my pain issues due to the IC, Fibro and migraines and my Shrink does the rest. I'm writing a letter to the new Judge explaining all this, hoping he'll see that I've just had no choice other than to cut back as far as possible. I stay in touch with the IC "specialist" in my State to stay up on new procedures or meds, but until there is something new, I just have to stick closely to my diet and manage my pain the best I can. I just hope the Disability Judge will see that for what it is; all I can do without a Disability payment a month!
        Diagnosed IC: Oct. 2005
        Other conditions: Fibromyalgia, Migraines,BiPolar Disorder, degenerated disc in back & Scoliosis


        MEDS FOR IC ONLY

        Oxycontin, 40 mg 3 x's daily
        Nerontin 1600 mg daily
        Cysta-Q
        Prelief

        MEDS: COEXISTING CONDITIONS
        Lithium
        Depakote
        Clonopin/Xanax
        Ambien
        Phenergan
        Butorphanol Nosespray

        Comment


        • #5
          This is unbelievable to me. I was shocked by this and it shows me just how messed up the legal system is. No one in their right mind would put in this hard work if they were not disabled and didn't have a legitimate illness. In your case you have many things going on and it's well documented. This is just crazy! I just don't know what else to say.
          Frances

          Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

          Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

          Other conditions: Migraines, allergies, mild IBS.


          "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

          Comment


          • #6
            Toto: Thanks for your reply....and on being shocked! We (includes my family and all my doctors) were FLOORED by the decision. If you read it it'd make you so angry you're head might pop off. I really had to pep-talk myself to death to get through the appeals since then; it's been a rough go. But I won't go unheard; I simply won't.

            Right now I'm having to, essentially, re-apply.......although it's the same case...I'm just having to go through that entire 1st-application-process, with the piles of paperwork and contacting all doctors again, since so many years have passed since my first application.

            Some days I've very optimistic; others, not so much. But I won't allow myself to quit. And for THIS round I'm making sure to re-send updated IC-info. FOR ANYONE WHO'S APPLYING AND ISN'T AWARE, THE IC ASSOCIATION HAS A DISABILITY-PACKET that is specifically written for IC patients applying for Disablility. It describes, in easy-to-understand medical terminology, IC to Disability Judges, as well as State appointed medical-folks. You can find the packet here (both packets are wonderful, but it's the SECOND one down that you SEND):
            https://www.ichelp.org/Page.aspx?pid...sct=Disability
            Diagnosed IC: Oct. 2005
            Other conditions: Fibromyalgia, Migraines,BiPolar Disorder, degenerated disc in back & Scoliosis


            MEDS FOR IC ONLY

            Oxycontin, 40 mg 3 x's daily
            Nerontin 1600 mg daily
            Cysta-Q
            Prelief

            MEDS: COEXISTING CONDITIONS
            Lithium
            Depakote
            Clonopin/Xanax
            Ambien
            Phenergan
            Butorphanol Nosespray

            Comment


            • #7
              Hi,
              I am also hanging in there and not giving up like you are. My case has dragged on for 5yrs. Over 5 yrs it has taken to go through the process on the same case. My attorney is taking it to the district court which is my last and only hope. I can't reapply as my benefits ended 12/05.

              Everyone agrees including the ALJ and appeals council that I am disabled but wont approve me as they can't find evidence that I was disabled prior to my benefits running out. I was diagnosised 63 days after the benefits expired and although there are years of dr appointments for what they thought was bladder infections, but not enough to prove disability during that time. ALJ didn't think I and my doctor were creditable. I hate that "creditable" word and how they can use it to deny.

              I'm not too trilled with my attorney but dont have the energy to find another one at this point. he is paying out of his pocket the fees to take my case to district court so he has the incentive to make sure I win and the confidence to put his money on the line for my case. According to the office secretary the attorney rarely will take a case to that point. Maybe only takes 1 or 2 a year to district court.

              DOes anyone know what happens at district court? Is it a meeting like it was with the ALJ? How long does it take to get the hearing at district court? I'm not holding my breath that it will be any time soon.

              I'm in Indiana. Wishing you and all those who are in the SSDI process luck and speedy decisions. It's crazy how long it takes.
              ~Laura

              There can not be a crisis next week. My schedule is already full.

              March 2006 IC tested positive

              current treatments for IC:
              Zoloft 100mg
              Prelief
              tramadol hcl 50mg (4-8 per day)
              diphenhydramine (1 nightly)
              elavil 25mg, Just started Nov 11

              additional meds for pain if needed:
              darvacet
              loratab
              percocet
              tried Elmiron for over year and didn't see much of a change, gained weight

              Also take Lisinolpril for high blood pressure

              Other conditions:
              IBS '93
              depression '94
              stomach ulcers '95
              Mitral Valve Prolaspe Syndrome '01
              Migraines since childhood
              Chronic Fatique '03


              It's not the number of years in your life that matter but rather the life in your years.

              Comment


              • #8
                I know how you feel

                I had social security disability for 5 years and then after a review they said that my doctor did not document enough information therefore I had improved. That is just dumb! It has only been a year for me but I just went before the ALJ about 7 weeks ago. I really thought it went well but not so sure now. I didn't have an attorney the first time I applied and got it right away. I have had IC for over 20 years but at the time of my review it had been about right at 20 years. My mom and my husband told him how I get depressed, I'm in bed most of the time, I have IBS, back pain IC, urethristis and was just diagnosed with peripheral neuropathy. He told me that the first time I got it was based just on my depression and nothing else. That doesn't even make since. I see only a pain management doctor and my regular doctor. He told my husband that he wanted to shake his hand because of all he does for me and that he is a good man. Does it sound like it went well based on that? I am scared. My letter will be here any day. He said 6 to 8 weeks and it has been 7 weeks.
                GO TO: IC-talkblogspot.com
                [B]CURRENT DIAGNOSES AND MEDICATIONS
                lumbar pain,depression,periphreal neuropathy,Insomnia,IBS
                for pain-tramadol ER 200 mgs (once a day),for break-thru pain-talwin(as needed),for periphreal nueropathy-Lyrica 150 mgs (3 times a day),for insomnia-ambien10mgs,for hot flashes- estradiol (estrogen),for IBS-Questran (one packet a day),for depression-paxil (80 mgs)=two 40 mgs a day

                SURGERIES-
                *Bladder and Urethra removed (Radical Cystectomy)-August 2012
                *Vaginal Prolapse surgery, ovaries removed and Interstim removed 2012June 2012
                *Cauterization of the bladder lining-1992-i don't know the technical term
                *Bladder distension and cauterization-1992
                *Cystocopy-1992
                *Gallbladder removal-1995-gall stones
                *Hysterectomy-1998-still have ovaries
                *Interstim trial-2002
                *Interstim implant-2002
                *Trial pain pump did not work
                *spinal injections-2009 (once with 1 injection and a second time with 6 injections)

                Comment


                • #9
                  I can figure you are not a happy camper, but I can understand. The whole legal system just sucks sometimes. Besides, I applied over 7 months ago. OK. I was told my case was being handled in Savannah.(less than 60 miles away)OK. I ended up getting a letter stating that my case was sent down to Thomasville.(much further away) Why? The lawayer said that he has seen cases sent to Alabama and so forth. Geez! If I keep getting denied, then I will be furious, too. I have heard the voice of the lady handling my case by now. She would not want to be trying to walk in mile in my shoes. (with degenerative disc disease and using a cane) (and being sometimes that is tired more often) OK. I did not tell her all of that, but I did state I have been going to the Medical College of Georgia since first applying over 7 months ago.(which she will contact MCG as well) Why do some people just get it on the first try while others have to fight to get it? If we did not think we should be able to qualify, then we should not be trying to begin with. (unless we are trying to scam the system) The psychiatrist even stated I should not be denied, but I never mentioned any visits with him at all. I first went to him in 2006 due to anxiety attacks, but I have not had one since 2006.(and got switched at work and did better) I am not on any depression medication any longer. He still lets me get Provigil; therefore, I go back some. He is trying to keep up with what all is going on with me with all of my medical problems and so forth.(and brought in my parents to ask how I have been coping and all) He said I was in better spirits the last time.(although I was in pain out the ying-yang when he actually said it) OK. I am getting off track from the original thread by now. If I get denied, then my retirement disability check is not gonna be enough much longer.(or even now) I just had enough in the bank to where I am not broke so far. I better let that be all now.

                  Comment


                  • #10
                    BLEEEEEEECH!

                    Maaaaaaaaaaaaan, I can't believe this. After years of waiting through appeals.......suddenly.......outta nowhere.........THEY SCHEDULED MY APPEAL HEARING (in front of a Judge, again)!!!!!!! Now, what was supposed to happen was this: I was to get all NEW records I've generated w/doctors since the initial application and once they were recieved "they" (who I assume is a Judge and others on a "board" of sorts) where to review the old and new and see if a unaniumous decision could be made in favor....if they couldn't THEN a new hearing was to be scheduled. I just got this word not even 7 weeks ago and have been scheduling appts with some specialists I've not seen recently for updates for the Judge.......but instead of waiting......BOOM!.....THERE'S NOW A HEARING in JANUARY!

                    I think I'm gonna have a nervous breakdown, for Pete's sake. These people are killin me. I couldn't get an appt. with the "IC Specialist" in my State until the end of this month, so I hadn't sent the release to SSI (which THEY will send to ALL the doctors) because I didn't want the doctor getting the release before the appt.

                    Holy mackarel. Pray that I can get all these records into them by the hearing date. I'm terrified to try and post-pone it.....I don't know what that might look like to them, ya know, after all this waiting. Oh, and to top that off.....I DON'T HAVE A LAWYER ANYMORE. My original Lawyer claimed I owed her nearly $400 when I lost my first hearing with the Judge......she said if I didn't pay her that she'd not represent me further. Well, that was a bunch of hooey to me.......they're supposed to represent you ALL THE WAY THROUGH...not just until THEY think you've lost. So, I had planned to possibly TRY (my case has already been thru so many appeals it's unlikely a lawyer would want to take it at this point) to get another lawyer IF a hearing was necessary......don't really have the time to now, ya know?

                    YEeeeeeeeee gads.
                    Diagnosed IC: Oct. 2005
                    Other conditions: Fibromyalgia, Migraines,BiPolar Disorder, degenerated disc in back & Scoliosis


                    MEDS FOR IC ONLY

                    Oxycontin, 40 mg 3 x's daily
                    Nerontin 1600 mg daily
                    Cysta-Q
                    Prelief

                    MEDS: COEXISTING CONDITIONS
                    Lithium
                    Depakote
                    Clonopin/Xanax
                    Ambien
                    Phenergan
                    Butorphanol Nosespray

                    Comment


                    • #11
                      You said you are disabled because of interstitial cystitis, degenerative disc disease, neck and back pain, neck fusion, balance problems, falls, and you walk with a cane. The medical evidence shows that your condition or combination of conditions is not severe enough to be considered disabling. The evidence does not show an impairment that would prevent most work-related activities. It has been decided, therefore, that you are not disabling according to the Social Security Act.OK. I have got the appeal papers sent back by now. Yes

                      Comment


                      • #12
                        Statesboro: you said that you didn't even mention all of your conditions? including psychiatric care? Be sure to include EVERYTHING, don't leave anything out. You have to tell them every little detail. It is hard because we are usually taught to "suck it up" and not lay it all out. In this case you absolutely must!!

                        Boohiss: Is the specialist you are waiting to see Dr Evans? I hope so. Not sure if you have tried this but I wrote to both of our senators asking for their help. I actually wrote a letter complaining for all of us that needed disability in NC that are waiting on the LONG list. I got an immediate (within a week) reply from Senator Burr's office. He has a woman that helps constituents in cases like this. They kept up with my case, in fact I got the letter stating I had been approved from his office. Prior to even my attorney knowing what the outcome was!! I got a letter from Senator Hagan's office 9 months after I was approved...um thanks a lot!! I was very impressed with Senator Burr's office, they genuinely seemed to care. They will send you a letter asking that you sign a form giving them permission to look into your case. I don't know if it helped but it certainly made me feel better, I don't think it influenced any decisions but I believe it helped get my case moving again. I was denied on my first application, appealed and was denied again, while I was waiting for a hearing date I got the letter stating that another ALJ (from another state apparantly helping our backlog) had reviewed my case and approved me. I sent my letters online through the government website.

                        I wish you the best, it is awful being here with such a backlog of cases. It was so difficult for us financially after I finally had to stop working. I dragged through for a year and a half until I just couldn't do it anymore. I was so spent mentally and physically. Unfortunately, at that point it is so hard to do all the paperwork they require of you. Oh yeah, one more thing I did. I gathered all of my records and made a sort of file (notebook) I bought the letter from the ICA for help with disability cases. I also included a calendar with all of the days of work I had missed the previous two years. I have been told it is very important to continue seeing all of your Drs while in the process and even after, to be sure that your records are continued.

                        Good luck and I hope some of this helps you.

                        Sandra
                        Link to the patient information, everything from What is IC? to Disability
                        http://www.ic-network.com/patientlinks.html

                        American Urological Association Clinical Guideline
                        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                        Comment


                        • #13
                          I had given permission for somebody from our representatives office to keep up with my case as well. I had first learned of the denial by email from the lady in his office. Of course, I had contacted by way of his website. By the way, they didn't use, or possibly never got, the results of my functional capacity evaluation. (which I did not do good on)(including being way off on my grip strength)(which I was surprised) OK. I did make sure the lawyer was aware. She had stated I may be able to do sedentary work only. (hmmm) She did not state I went to the bathroom 4 times during the test at all. She did not state sitting is not gonna help someone with back problems too much.(though we may think so)(which it may help some) Several desk job people have complained of back pain over the many years by now. Who would want to hire me? I walk with a cane. OK. I was told I could not return to my last job without neurosurgeon given the "OK" for me to.(because of falls at work)(and complaining of pain and leaving early) I never got to go back. MRI was showing degenerative disc disease 3 days before Christmas. Yep! Oh, well!

                          Comment


                          • #14
                            I got approved. I didn't have an attorney. Just hang in there. You need at least 2 people who know you very well to be there and give there statements. I really hope you are approved. I know what you are going through and it is very hard to have to get everything together and have to face an ALJ. However, my ALJ could see that I am suffering. Goodluck!!
                            GO TO: IC-talkblogspot.com
                            [B]CURRENT DIAGNOSES AND MEDICATIONS
                            lumbar pain,depression,periphreal neuropathy,Insomnia,IBS
                            for pain-tramadol ER 200 mgs (once a day),for break-thru pain-talwin(as needed),for periphreal nueropathy-Lyrica 150 mgs (3 times a day),for insomnia-ambien10mgs,for hot flashes- estradiol (estrogen),for IBS-Questran (one packet a day),for depression-paxil (80 mgs)=two 40 mgs a day

                            SURGERIES-
                            *Bladder and Urethra removed (Radical Cystectomy)-August 2012
                            *Vaginal Prolapse surgery, ovaries removed and Interstim removed 2012June 2012
                            *Cauterization of the bladder lining-1992-i don't know the technical term
                            *Bladder distension and cauterization-1992
                            *Cystocopy-1992
                            *Gallbladder removal-1995-gall stones
                            *Hysterectomy-1998-still have ovaries
                            *Interstim trial-2002
                            *Interstim implant-2002
                            *Trial pain pump did not work
                            *spinal injections-2009 (once with 1 injection and a second time with 6 injections)

                            Comment


                            • #15
                              Bama:
                              I got approved. I didn't have an attorney. Just hang in there. You need at least 2 people who know you very well to be there and give there statements. I really hope you are approved. I know what you are going through and it is very hard to have to get everything together and have to face an ALJ. However, my ALJ could see that I am suffering. Goodluck!!
                              I've never been offerred to have witnesses present. Before my first hearing I asked my Lawyer if I should have witnesses, and that I had at least one ready to testify.....she told me it would not be needed. After reading what you said, and considering I don't have a lawyer now, I'M THINKING MAYBE I DO NEED SOMEONE to be there (Heck, I'm convinced I needed them BEFORE...I did not have a very good lawyer). How do I go about bringing someone? I don't just SHOW UP with someone in tow do I? Wouldn't I need to make them aware first?

                              And honestly, having them question a friend/family member makes me nervous as all get out....and will probably scare them to death. Could you tell me what type of questions they were asked? I feel awful to put someone on the spot like this w/out giving them an idea of what might happen, ya know?

                              Thanks so much,

                              B
                              Diagnosed IC: Oct. 2005
                              Other conditions: Fibromyalgia, Migraines,BiPolar Disorder, degenerated disc in back & Scoliosis


                              MEDS FOR IC ONLY

                              Oxycontin, 40 mg 3 x's daily
                              Nerontin 1600 mg daily
                              Cysta-Q
                              Prelief

                              MEDS: COEXISTING CONDITIONS
                              Lithium
                              Depakote
                              Clonopin/Xanax
                              Ambien
                              Phenergan
                              Butorphanol Nosespray

                              Comment

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