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its been avery long time

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  • its been avery long time

    since Ive visited, but in the last 2 yrs had ICD implanted and had the septal myectomy done. recently taken off meds as they are doing me no good and any other meds may only do me harm but with this disease there is no cure so I still deal with the heavy pvcs and fatigue now trying to continue the fight to get approved for social security, they say im fine to work but my body says otherwise and so do my doctors.
    Lana

  • #2
    Re: its been avery long time

    How-de-dew Dew,
    My wife developed epilepsy at the age of forty-five. Under the Federal guidelines she was having enough seizures to qualify for both a NY State Disability Pension and Disability Social Security, but she was denied for both, and the appeals were denied also.

    Shortly after she became ill we moved to California and she was being seen at UCLA. On appeal Social Security asked for her UCLA records, and somebody who had never seen her, while duplicating the records, checked the box that she was able to work on the records request. New York State, after denying the claim for disability pension refused to reopen the case claiming the time had expired, and it was too hard to fight the case in Albany New York while living in California. (She since got the regular retirement – which pays more.)

    After fighting the Social Security people for five years, the case finally went for final adjudication before a Judge. We hired a lawyer who made extravagant charges, like his secretary would call to remind me about a meeting immediately after I got off the phone with the lawyer talking about the meeting. Every time she called I was billed for fifteen minutes of the lawyer’s time. (He was later disbarred – I don’t know why.)

    In any case, we went before the Judge and I had gathered all the paperwork and documentation myself. We won the case, and the payment start date was made retroactive to our first filing. Five years of benefits came to an interesting bit of change.

    I would suggest getting statements from the doctor(s) stating that you are disabled and unable to work – and that it is a permanent disability. Then make copies of the letters and file an appeal with the copies of the letters attached. You might win there and then. If not, continue the fight with another appeal. You will finally go before a Judge and be treated fairly.

    One last thing, after you win they will continue to check on you about every five years until you reach sixty-five, or by then it might be seventy. Another statement from your doctor that you remain permanently disabled will keep you on the Social Security Disability roles.

    Remember that you paid for that insurance, and are fully entitled to the benefits when you are disabled.
    Burt

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    • #3
      Re: its been avery long time

      Hi Dew Drop 2,

      I understand and empathize fully with your plight and the way you continue to feel. We're all different and our disease is specific to each of us. It is a difficult realization that sometimes some of us have to keep firm in our mind every day and at times every minute if it is tough day or challenging event that there were goals set for what the intervention of myectomy was intended for. Recently I went to the HCM clinic and met with my wonderfully supportive and knowledgeably superb HCM doctors. We discussed these issues . It gave me a chance to step back and really think," what was the goal of myectomy?" It was to relieve symptoms of a severe and incapacitating nature , to also hopefully give me an opportunity to at least attend to some normal activities of daily living. Has it done this? Yes it has. I would be telling a big fib if I did not admit to you that of course I want more . It is only normal to want and desire those things that set me apart. The things I can still do very well , I hold onto and focus on . Many of these things are not of the physical world. They are spiritual , they are artistic and they are in interpersonal communications. They are just about being me and me accepting that and giving some thanks that I could be a lot worse off as we all see by just looking and listening.

      Now saying all this does it help when we struggle in the world as it is with all the demands physically , financially and emotionally. Probably not a whole lot. Just staying positive is sometimes the biggest challenge. It is far more easier by not being exposed to lots and lots of people who remind us of our difference. Sometimes I feel like a recluse or that I should join some convent or something , but that would not work either. So I temper my exposure and try to be glad I am me in general. Staying connected to our HCM family is of utmost importance as we find much comfort and support here. Sometimes just reading is enough and sometimes posting or PM'ing someone here is enough. I assure you it all can only help ease the hard times and offer hope .When it is real bad for you, try not to feel bad about what you are left with and think of being a survivor.

      With regards to the disability, Burt made some good points , I was denied 3 times and immediately hired a disability lawyer. They are not allowed by law to accept payment other then a % of what you recieve if you win . If you lose they get nothing. I also urge you to contact your local congressman or woman. Although they can not influence the case or speak to the judge they can if after hearing your story and if they agree encourage you and file a motion of support with the court. This will reach the judge.
      You are entitled to see the information that was sent to the disability board so I encourage you to review all this and get as much back up and support as possible from your docs. The statements have to be clear. They must state that you are permanently and fully unable to perform any job. Your docs must write in this language those words.

      I wish you luck with all this and hope you can keep us informed , it can help others as well to learn from your journey and it will help you get the info and support you need.

      When I finally went to court the doc for the federal govn't said from his review I met all criteria. THe judge shouted out, " Well what are we doing here!! CASE CLOSED, DISABILITY RETROACTIVE TO THE DATE OF DIGNOSIS. So this could happen for you to , don't dispair, keep on pluggin.

      Best wishes , Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment


      • #4
        Re: its been avery long time

        Hey Dew,
        Since I had done all the digging and fact gathering myself, the lawyer was hired on an hourly bases. Even with all the wild billing practices he pulled (like charging an hour for the first ‘free’ interview, and a quarter of an hour for every time his secretary called me), the total bill came to eight hours time. He claimed it was the largest settlement he ever won and the smallest fee he ever charged. If you plan on gathering all the data yourself you might want to consider a straight hourly agreement with your attorney.

        This would be especially true if you have access to a law library. One was part of the library system in the San Fernando Valley, so I knew the law and could present my claim in the proper format. Good Luck – You CAN win this.
        Burt

        Comment


        • #5
          Re: its been avery long time

          Burt , did I miss something? Was it the time frame or what that caused you to get a lawyer for fee? Maybe I need to reread your post. Because as the disability process goes you are entitled to obtain a disability lawyer and the agreement is as I stated , you only pay if you win and he is paid directly by Federal Disability and then you get the remaining money. If they try to charge you more they can get in a lot of trouble. Is this prerhaps why your lawyer was disbarred or maybe he did a lot of unsavory things?
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            Re: its been avery long time

            Fortunately I hired a lawyer before I even applied for disability, its just a little frustrating. Their idea of returning calls is me constantly calling on the chance that I might catch them in the office and not already on the phone. They are very reliable when it comes to returning my calls, so, yes I have to stay on top. I am a stickler when it comes to paperwork, so anything I sign or fill out I always makes copies for my own records before they get mailed off and have a huge file folder already. I keep records of everything including medical. We are a military family, still have a few yrs until retirement and a 7 yr old daughter in school. Ive got a way to go before Im considered retirement age. I guess they think Im too young to feel the way I do and should be able to handle it all physically
            Lana

            Comment


            • #7
              Re: its been avery long time

              Pam,
              I was going back twenty years, and maybe the laws have changed, but I don’t see how they can dictate who you hire as a lawyer. Seems like it would be a conflict of interest from the get-go.

              Possibly they offer it if you choose to go that way, but I don’t think you’re absolutely locked in to using their chosen lawyers. In any case, Dew has a lawyer already, so the point is mute.
              Burt

              Comment

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