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  • #16
    Disability Packet

    I looked at the ichelp org. website and found the form to order packets. There are several ones. Can someone tell me which one was most useful.

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    • #17
      I think the packet that most people use is the one that has a personalized letter (if you don't have the info they can make it generic) and also has detailed info about the rulings and how all of them apply to IC. I will go over to the site and look. I got that one too.

      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

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      • #18
        ICA Personalized Disability Packet - $20.00/$40.00

        I think this is the one.....they have changed the site since I ordered mine but this looks as if it would be what I got. I didn't see where it really describes the packet but I just did a quick look.
        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


        • #19
          Ss

          Thanks, I will get it.

          Comment


          • #20
            Yes their is hope to get SSDI benifits from IC!

            First : Diagonosed April 06. Hopping to get better! Did not get much better a little worse after 4 yrs! Started SSDI process on my own. Got denied in 6 months with answer from social security admin. with Sorry your a male and you can work , Your IC case not bad enough. I thought oh well ssdi office must be right. Wrong! Then got my pamphlet here that you can purchase about ssdi and their understandings of IC are. And hired a good lawyer started back with social security office back with full info full Dr's reports! meds taking function report. work history report, friends and family documentaion of my IC was doing to me and my friends and family! After 7 months from ssdi office got denial again because they said missing paperwork from me and my attorney. (wrong) Lost somewhere but did appeal for reconsideration asap with attorney had all documents all fully loaded and all info from the icn literature pack they sell put all together with my documents and gave the packet and did a interview with social security office to look at me and go over everything wrong with me and why I;m fully disabled. And being a male with cronic pelvic pain 24 7 little relief from all the meds. I finally got thru to the SSDI office with the help from the urolgist, pschiatrist, pain dr, gastro dr, and my GP Dr.(Sorry to ramble) And behold you I recieved my awards letter from SSDI WITH FULL BENIFITS ON JULY 25 10! AND BEING A MALE with my diseases and sicknesses the major one is IC. And everyone told me I was wasting my time that social security wont care and tell you you can work. Wrong to much pain and everthing IC gives you. As we all no!

            Just want to tell any IC patient who has this disease and had it for few yrs and its causing you not to be able to work. Please their are time frames to file, but you have your rest life. And we all no you need $$ to live on . So please feel with patience,time . And help YOU CAN GET YOUR SOCIAL SECURITY BENIFITS APROVED AND GET BACK PAY AND A MEDICARE CARD AND CHILD DEPENDENT EXTRA $$ TO HELP OUT IN ARE JOURNEY OF THIS HORRIBLE DISEASE!! PLEASE DON'T GIVE UP. THE LAWYER I BELIEVE AND THE PAPERWORK FROM HERE MAKES THE WORLD OF GETTING APPROVED FOR SSDI.I NO IT'S ALOT OF WORK BUT IT'S YOU OR YOUR FAMILY'S FUTURE FOR SSDI OR SSI PLEASE DON'T GIVE UP. I FELT 4 YRS OMG NEVER GOING TO GET NO SSDI. AND GOT IT ! WAS SO WORTH IT NOW GOT SOME MONEY TO HELP MY WIFE WHO TOOK CARE ME . IN THE LAST 4 YRS WHEN MONEY WAS DOWN. AND I COULDN'T WORK. SO NOW IT DOES HELP YOU LIVE A LITTLE BETTER AT LEAST. YOU ARE GETTING SSDI TO HELP!! THANK YOU ALL WITHOUT YOU ALL HERE, SOMETIMES I NO ALOT FEMALES. BUT I THINK SO MANY MEN TREATED WRONG? BUT IN THE 4 YRS LEARNED SO MUCH FROM ALL THE PATIENT STORIES! MALE AND FEMALE! NOW THAT I WILL GET SSDI, AND SUPPORT HERE AND THE WONDERFUL DR'S I HAVE. THEY WILL MAKE MY LIFE ALOT BETTER LIVING WITH INTERSTITIAL CYSTITIS!!!!

            THANK YOU MEMBERS FOR LETTING ME LEARN AND UNDERSTAND SO MUCH FROM IC! AGAIN SO SORRY TO RAMBLE BUT IF I CAN HELP OR INSPIRE ONE MEMBER TO BELIEVE AND GET SSDI APPROVED , I WILL BE SO HAPPY I COULD HELP SOMEONE.

            JOE MEMBER 4 URS MALE 49 YRS OLD!
            MEDS TO MANY TO LIST- ALL MAJOR TREATMENTS-DR'S

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            • #21
              Joe,

              That's wonderful news. I hope it takes a lot of stress away.

              :woohoo: :woohoo:

              hugs and blessings
              MARY


              Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

              Comment


              • #22
                Joe, thank you for sharing your story. Congratulations! I know what a big relief that is. When you mentioned that you got help from your Urologist, psychiatrist and other doctors, can you tell me more about that? Did they write letters? What did you mean by get through?

                I am on SSDI, but my review will be in 6 years. I am already preparing and trying to find other doctors who will support me for when my next review comes up. The doctor who supported me is a now a few states away. We now live in Indiana and I feel like I am back on the bottom of the barrel with starting all over again with new urologists who have to do things "their way" before they believe me as to why my other doctor put me on SSDI in the first place. One doctor even said he was going to "cure me" and get me off. Can you believe that? Needless to say, I never went back to him. Congrats again on your case!! You are right, it is much harder for males to get on which makes this even more of a celebration.

                Comment


                • #23
                  SS ruling on IC

                  I have tried for disabilty 2 times. This is my 3rd time around.


                  I am not only going for the pain part but for mental as well. So wish me luck!



                  I have Biplor, depression, anxitey, post d, stress disorder, adult adhd, IC, VV, TMJ and PFD.
                  FunGirl
                  ICN Member
                  Last edited by FunGirl; 01-21-2012, 01:36 AM.

                  Comment


                  • #24
                    It took me 3 times until I got it. I had SSD for 5 years and then when I had my review it was denied and then denied again. I had to go before the ALJ (judge). I didn't have any attorney. Personally I don't think you need one. I was told that having someone with you that knows you well and can vouch for you then that is better than any lawyer. Lawyers are paid to fight for you. Loved ones and people who really know you actually WANT to fight for you. It is not worth the money paying for a lawyer unless you have to actually go to court. If you have to go this far then I would get a lawyer and have my doctors there. Whatever you do don't give up. That is what social security is hoping you will do. When you really do need it then fight for it. I did. I have severe IC, urethritis,periphreal neuropathy,Ibs, lumbar pain, neck pain and depression. I am also on about 11 medications and I am only 41. I am not complaining about it though. I am glad that these meds help me. I wish everyone here that needs SSD the best luck!!!
                    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


                    • #25
                      Social Security

                      Yes, it took me 3 years to get my disability because IC doesn't fit into a neat little government category. I finally got a very sympathetic female judge who approved it. It was crazy that I was denied...social security's own expert vocational rehab person even wrote that "I was unemployable due to the frequency of my need to urinate". There is no employer that is gonna be ok with letting an employee spend time in the bathroom every 10 minutes. Life is hard enough wthout these jokers making it more difficult.

                      Comment


                      • #26
                        SS ruling on IC

                        That is true. I am having my hubby there and everyone that knows me has written a letter on my behalf. Even my mother wrote one.


                        I am also dealing with depression, aniexty, biplor and post d. stress disorder.

                        I also have Adhd, IC, Vulvadenia and PFD.

                        Comment


                        • #27
                          ss

                          I applied in 2004 I was denied and gave up. The situation I am in know my husband was laid off work 12/19/11 and his job of 25yrs is know stating they will probably be no work until 4/12 I spend 500.00 a month on meds my parents have been helping with that but I am going to have to go back to ss and ask them again if they could help me ? Wish me good luck ladies

                          bamagirl I am glad you had it in you to fight them I myself just gave up
                          Blessings,
                          Ruth

                          Comment


                          • #28
                            Social Security seems to count on the fact that many people give up..hire a lawyer, they need no money up front and will take about 25% of any retro money owed to you. While 25% may seem like a lot it is worth it to know that you have at least some income each month and health insurance coverage.
                            Good Luck to everyone fighting this fight! God Bless.

                            Comment


                            • #29
                              Holly, you are right if it is your first time applying. It is different though if you already got it and then have a review and get denied. You can't find an attorney to represent you then without a huge hourly charge. That is why I didn't hire one after I was denied in my review. I know exactly what you are talking about for the 1st time around and totally agree with you.
                              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


                              • #30
                                CurlyCue,
                                Please don't give up because that is what they want you to do. They will deny you 2 or 3 times to try to get you to give up. I told my husband that I deserve it and will fight for it. You need to do the same!! It can be really tough but you can do it!!
                                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

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