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Help!!!! Need Some Advice!!!

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  • Help!!!! Need Some Advice!!!

    Hello Everyone! I am new here. I have had IC for 12 years. It seems as though I have tried about everything for my IC!! In the beginning I had succesful treatments, but now it seems as though nothing has helped me. I have severe pain with my IC. I am on pain meds. 24/7. Along with other meds. I also have fibromyalgia, IBS, Chronic Fatique Syndrome, and migraines. In time I am sure I can tell you all about me. But I really need some advice on Social Security Disability. I have read on this board where other IC were approved. Can anyone please tell me how you won? I had to give up my job because of my IC. My Doctors told me also to give it up and that I was putting too much on myself. I got my first denial today in the mail. I am going to get my a lawyer to put some of the stress off of me. When I did apply my first time I gave them tons of info. on IC. I also recieved a disability packet from the ICA and turned that in also. I am just at my wits end now that I got denied. Can anyone please help me. I don't know what else I can do. Any advice would be greatly appreciated. I am very glad that I have found this message board and I hope I am welcomed. I am sorry about going on and on. Thanks.


  • #2
    April hello and I'm sorry you are hurting so bad and it seems like there is no help from Disability yet. I have had IC for about 30 years and had to quit work about 10 years ago. I applied but was turned down and did not pursue I wish I had because now at 54 and have not worked I sure can not apply. Good luck and God Bless. Hugs


    • #3
      April, almost everyone gets denied on their first try. I won mine on my 1st appeal. I had my dr's write letters, I had my hubby write about what he has had to take over in the household and my daughter write letters about having to take me to dr visits and grocery shopping.
      When I filled out the forms on the appeal, I did NOT answer each and every question because I felt they were trying to trip me up. They ask the same darn question 12 different ways so I wrote see ans to #3, or what ever related to the question being asked.
      I used the advice from the ICA and the info I found on the computer, I did not hire an attorney because I felt if it ended up that I had to go before a judge, NOBODY could explain how much pain I was in but me. So, why pay an attorney 25% for that.
      I did think I would loose my mind. I had no idea how hard the fight was going to be. But, I made it a mission and I promised myself that I would go on until I was approved, no matter how long it took. It was hard because filling out those questions remind you of so many of the losses from IC, but, if I could do it, anyone can do it.....
      you go girl and don't let anyone stop you! This is for you AND for the next person that applies.....
      tons of hugs teri
      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


      • #4
        Welcome April,
        I'm sorry about your IC and disability. I attribute my success with Social Security to 2 things. My doctor is the number 1 reason. He's been incredibly supportive and understanding. The other reason is a bit more complicated. I am also receiving disability through an insurance policy from my former employeer. This was actually much harder to get and they constantly challenge my status. But I think this paved the way for my approval with SS.
        I totally understand your frustration. Please go back and read some of the other posts on this board. There are a few posts with advice on how ICers have won benefits. It's a grueling process, but don't give up. You deserve the benefits. We are here to help you!
        take care,


        • #5
          Dear April,
          I am sorry that your SS disability was denied. I was approved two weeks ago with my initial application. I know that I was very lucky being approved so quickly. I'll tell you my experience and hopefully it will help you some. I did use an attorney. He specializes in disability claims and I met him at an IC support group meeting. He explained the process to us and really seemed to know what he was doing. He explained that the key to being apporved is supplying the medical evidence to prove your claim. You have to make sure that what you tell SS about your symptoms and how they affect your ability to work is backed up completely in the medical records. They are not going to take your word for it, you have to have the evidence. I guess that sometimes SS will not receive records from all your doctors and hospitals. They don't take the time to try and get all of the records. That's where an attorney comes in. They will make sure that SS gets all of your records. Also, after my application, I continued to have tests and treatments. We made sure that SS got copies of everything as I had new test results. The attorney will put your case together using all of your medical problems to try and prove that you can't do any job. I used an attorney because I wanted the best chance to win. The fee that the attorney charges is set by law. SS pays him out of the back benefits that you get when you are approved. In my case they found my to be disabled in Sept. 99. So, they paid me from then until now, and took his money out of that lump sum. I guess that I don't really miss that money that they gave im because it's money that I didn't have anyway. And, it was probably worth it to have had my case worked by someone who made sure that it was a good case and was very complete with the evidence. If you decide to get an attorney now for your appeal, make sure you find one who is experienced doing SS disabiltiy cases. I hope that you don't think that I am pushing using an attorney. I have never used an attorney for anything before, but I am sure that it helped with my approval. He said that I had a good case with great medical documentation, but was surprised that I was approved on the first try. This attorney told me that the appeal hearing was the best chance to win a case. He also told me that he is doing more cases based on IC in the last year and they are starting to receive the attention that they deserve. So, that's good for all of us with IC. I wish you luck on your case. Don't give up, you deserve this! Please e-mail me if I can help you more.

          [email protected]


          • #6
            Hi April, Everyone that has answered you should be of great help to you. One most important thing is to have a doctor write a letter that you're unable to work due to chronic pain. My doc also wrote that many treatments tried had failed and that I had many drug sensativities which hampered any treatments that are currently available. The second most important thing; and I didn't realize how much it helped at the time, is to be seeing a phychologist because you were having a hard time living with the pain. I was actually in an on going chronic pain group prior to filing and it ended up helping a great deal. Almost everyone does get denied on the first application. DO hire a SSD lawyer. Even though I felt it was my actions and my docs letter that mostly helped, I felt more secure with a lawyer. They do have much knowledge on the subject. There is a law that only allows a lawyer a certain percentage of what you get. They also help get you the money owed from when you stopped working. Anyway, good luck and don't give up, Cora