No announcement yet.

SS ruling on IC

This is a sticky topic.
  • Filter
  • Time
  • Show
Clear All
new posts

  • SS ruling on IC

    IC is not on SSA's list of automatically qualifying diseases and conditions, such as terminal cancer, quadriplegia, and blindness. However, since 2002, SSA has had a Ruling that IC is a potentially disabling disease. In order to make a successful claim for SSD benefits, you have to be able to prove that 1) You have IC, and 2) You are substantially disabled by it. When you apply, it can be helpful to include this Ruling with your application, because yes, it is their own document, but you cannot expect every caseworker to be aware of every Ruling. To say the least. It's also a very good idea to read it carefully, yourself.

    Here is the link to the Social Security Administration's Ruling on Interstitial Cystitis:
    Last edited by Berkshire Road; 02-21-2008, 05:40 PM.
    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
    Wishing you happiness and good health, and all the best out of life.

    Peace, Carolyn

    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

    On the Beach with IC

  • #2
    I have it saved to favorites LOl to email people also. It's a handly little link.


    • #3
      Thank you! I did edit to change the title and made this a "sticky" thread so anyone coming to this particular forum will see it at the top.

      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Thanks Donna, that's a great idea, but if it's going to be a sticky maybe we should include an explanation of what an SS Ruling means, in practical terms?

        I'm just concerned that people who are not looking for it, and/or have never heard of it, might find it confusing.
        Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
        Wishing you happiness and good health, and all the best out of life.

        Peace, Carolyn

        Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

        On the Beach with IC


        • #5
          Handicap Placard

          Hi Ladies.......... I really dont know where to post this? I am trying to obtain a handicap placard for the last 2yrs from the DMV here in California they gave me a temporary one but its going to expire in October. I asked the dr if he could give me one that last for one year and he said the reason he was not able to do that was cuz, DMV does not concider IC a dabilatating illness and that I would need to write them a letter telling them why I need one? I told my dr welllllll let me see I am cathing 4 times a day, when I pick my daughter up it takes 15 minutes to go through the car line I go to the bathroom when I leave my house and I am dying to go when I come home I have wetted my self I stoped counting, when I go to wallmart I have to park in the front cuz once I am in there got to go and while I am in there on a good day I at wallmart I have used there restroom 2-3 times If I even think about going to the mall I have to go super early cuz parking is awfull. I guess DMV does not want me to have any kind of life and if it was not for me 10 yr old I would just sit here and cry, and to top all that off I have IBS and Fibromalgia and they still dont think I should get a placard. Its not fair. I will have to write the letter I was just wondering is there other ladies that feel this way? or am I the only cry baby.


          • #6
            Any of your doctors will probably be able to help with getting a placard. I got mine due to chronic pain not only for IC but for other issues.


            • #7
              Call your Congressman's office.Someone in that office will help you.


              • #8

                Thanks for the info, I never thought about calling the congressman.


                • #9
                  Have GREAT news!!!!!

                  I was denied twice for my disability claim and went in front of the judge and my attourney said that it would be a long process talking to the judge and they person that is there to try to think of anything you can do so he can try to prove i could work..... It took me no longer then 20 minutes talking to the judge and he kept appologizing to me that i had to deal with this disease so long. The other guy never said one word to me, the judge pushed through my disability papers and my medicare papers for me and i was told by the judge before i walked out of the room that the was no doubt that i got my full disability!!!!!!!! my attourney was shoked!! im so happy that i got a sympathetic judge anyways thought i would let everyone know i got it and i am so thrilled!!!
                  Dx with Carprul Tunnel 2000,endo in 2001, IBS in 2006IC in 2007,BiPolar 2008, and Panic attacks (anxiety) 2008, agoraphobia 2008.
                  Meds: elmiron,Clonazepam 1mg 3x a day for anxiety


                  • #10
                    Well...that makes sense to at least why I was denied on my review. Thanks for posting.


                    • #11
                      That's good news. I may have to go for disability if I lose my job due to my poor attendance at work. I am hanging on by a thread. I have already been warned. I hope I don't have to go that route but if I can't get a handle on this disease I may have to. I pray every night for a cure.

                      Keep The Faith
                      Rebekah - Diagnosed with IC and Hunner's Ulcers in March 2009

                      Two Hunner's Ulcers were removed by laser surgery surgery Jan 15 , 2010

                      Proud Mother of Jeremy Jr. Born on Wed May 4, 2011

                      "For every door that is closed a new one is opened"

                      The Lord's Prayer

                      Our Father, who art in heaven,
                      Hallowed be thy Name.
                      Thy kingdom come.
                      Thy will be done,
                      On earth as it is in heaven.
                      Give us this day our daily bread.
                      And forgive us our trespasses,
                      As we forgive those who trespass against us.
                      And lead us not into temptation,
                      But deliver us from evil.
                      [For thine is the kingdom,
                      and the power, and the glory,
                      for ever and ever.]


                      • #12
                        Some suggestions. Document things. Americans with Disabilities Act covers people who are unable to do more than one major function, walk, sit for the hours of work, pain etc. that effects concentration. Suggest starting documentation of days out of work because of IC, and apply early. You can always cancel it. Unpredictable nature of devestating symptoms and frequent urination. I lost ability to concentrate even on filiing. It took months to get the ruling back in 1996. I need to lie down during the day and go to bed at times or nap. It took longer than I thought for my work to get this going. I was a federal employee and took federal disability retirement too. There is a handbook somewhere that tells how to apply successfully. All the best and God bless everyone here.
                        If you keep a green bough in your heart
                        the singing bird will come.


                        • #13
                          You can get some good information and a packet through the ICA website to help with applying for disability. Also, if you are trying to continue working see if you have FMLA, you should. You can have your Dr fill out the forms to state that you need intermittant FMLA, meaning that you will need days off and you don't know which ones. That way if you have to call out, leave early or go to the Dr, you are protected. You have about 120 days or so a year and they roll over each year, so if in Jan of '10 you used 30 days, in Jan of 2011 you immediately get those days back. It can be a life saver if you are trying to hold on to your job.

                          Good luck,
                          Link to the patient information, everything from What is IC? to Disability

                          American Urological Association Clinical Guideline
                          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


                          • #14
                            which info packet on the icn store helps with disability....i couldnt figure it out...i am new LOL


                            • #15

                              the packet is on the ICA, Interstitial Cysitis Association not on this site. If I can remember right look under social security disability. Let us know if you found it.

                              hugs and blessings

                              Serenity isn't freedom from the'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....