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  • Please advise

    I want to approach the subject of SS disability, with my urologist. My next appointment is December 10th. I have order the suggested materials from ICN, but haven't received them yet.

    I've had IC for eight years. I stopped working as a nursing home administrator 2 1/2 years ago. I hoped with less stress I would do better and eventually be able to return to work...that plan didn't work.

    I had a great doctor, but when I stopped working I had to relocate out of state. The guy I have now is ok. I just don't have the same relationship I had with my orginal uro.

    Any advise would be most appreciated

    Jen
    IC dx 1996
    Interstim 2000 removed & reimplanted 2001 & 2004
    Hunners ulcers
    urgency/frequency
    Pain

  • #2
    I don't know why it is so hard to talk to a doctor about disability. It was hard for me too. I actually got disability from my work first. I am now applying for ss disability. I am very lucky to get disability from work while I wait for the long process of ss disability. I gave my doctor copies of all the literature I got from the ICA. I told him I felt like a failure for not being able to work anymore. He said "you are not a failure, your bladder is." Your doctor will most likely be more supportive than you might imagine. The bottom line is, you can't work. I cannot sit with my feet down anymore, for more than 15 minutes, even then it is very painful. The ICA information is very helpful. GOOD LUCK!!! And remember, every one of us would love to be able to work, and not have IC.
    carly

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    • #3
      Carly,

      Thanks for your encouragement!



      Jen
      IC dx 1996
      Interstim 2000 removed & reimplanted 2001 & 2004
      Hunners ulcers
      urgency/frequency
      Pain

      Comment


      • #4
        Jen~get the ball rolling with SS first and then worry about your dr's.

        You will beable to get all of your records from your other uro plus ask him to write a letter for you. When I applied they saw that my income had been cut in 1/2 for the last 2 years I worked. I tried working out of my home and it just didn't work....I couldn't get the paper work done in the alloted time. I really think that helped my case.

        GOOD LUCK.....and remember, keep copies of EVERYTHING that you send them. Write down dates of when you talked to SS (get the name) and the time. They are going to nit-pick you to death so you have to be prepared to do things their way.

        When they send papers for you to fill out they will ask the same question in 3 or 4 different ways. I got so p*[email protected] that I would write "see answer to question #3".......It's bad enough we feel like total s^*!, we have to play paper games too BUT, you CAN do it wink
        teri
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

        Comment


        • #5
          Teri,

          Thanks! I've been dreading this...I'm just going to have to pull myself together and get it done. I know chances are this is going to be a long hard haul and it scares me.

          eek

          Jen
          IC dx 1996
          Interstim 2000 removed & reimplanted 2001 & 2004
          Hunners ulcers
          urgency/frequency
          Pain

          Comment


          • #6
            jen75,

            You need to call SS to stat this. Do not dread this. this IC thing it is not our fult to begin with? I don't know why it is so hard to talk to a doctor about disability. It was hard for me too. My doctor (Uro encourage) me to call SS. He is with me so that help a lot. i did not apply till this year. My Uro told me what you waiting for? you should try to call SS. so finally i did in April & my Uro is with me. He even write a letter to SS about my IC problume. I know it is long battle but nothing hurt to try. go for it.

            Comment


            • #7
              jen75,
              The realization that your life has changed and will never be the same is a difficutlt pill to yswallow, but IC has taught me that the serenity prayer is s-o-o-o true.
              In a previous life I was a Social Worker and the funny thing is that a few years before my diagnosis of ic , I made a lateral move to adult services where I intiated a lot of disability claims. Who knew that one day that otj ould work for me. As others have advised you, document everything and obtain copies of all your medical records. I recieved disabilty from work first, and was denied ss benefits . I appealed the ruling and recieved a favorable ruling. I did not use an attorney because I gathered my evidence and was ready present to the appealate judge. My ruling came 2 months after ss declared IC a disabling disease. The judge made a ruling that I had worked continuously since undergraduate school and the fact that I was unable tolerate any of the meds prescribed caused me to lay on my heating pad10-16 hours per day. Coupled with the fibro I was unable to function in my former position.
              Sorry i rambled but it is important that you do not allow the system to beat you to the point that you give up, 'cause that is what it is designed to do.

              Good luck!!
              "I can be changed by what happens to me
              But I refuse to be reduced by it" ~Maya Angelou

              Comment


              • #8
                IC Sunshine/4-12
                How long did it take you from the time you applied for ss disability, and your favorable ruling. I also am receiving disability from work, but also applied for ss disability. I haven't heard anything yet. In the meantime, I have developed severe asthma and am on home oxygen. Maybe this slowed down the process for me as I was in the hosp. for 10 days in Nov. Congratulations on your successful decision. It really is a hard pill to swallow to accept that this disease has changed your life. It seems to me that most people with IC also have other diseases. I often wonder if they will find a link someday.
                carly

                Comment


                • #9
                  hi Carly,

                  I applied for ss August,2001 was denied in May,2002, . The appeal hearing was January,2003,I shouted for joy because it was vindication for me,. I had been told that it was impossible for me to get it especially without an attorney.

                  I am so sorry that you were hospitalized for severe asthma in November, that had to be pretty frightening. Is this an additional diagnosis? If so the critieria is that you can no longer work in your current profession,unless the rules change again
                  When ss reviews records it is inclusive of all available medical records at that time. When did you apply? It is my understanding that the person assigned to your case at the disability determination office my have upwrds of100's of cases. My first examiner never spoke to me only reviewed my case. That is what really angered me. If I did not understand the system and kept copies of all my records the outcome could have been not favorable.

                  Never give up and always keep your claim active, appeal,appeal, appeal! wink
                  "I can be changed by what happens to me
                  But I refuse to be reduced by it" ~Maya Angelou

                  Comment

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