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  • Journals

    many people on here had mentioned that they created journals about their voiding habits, pain from IC, etc etc. I asked my attorney about this and they said it wouldn't matter because S.S. only looks at the doctuments from the professional doctors. Does anyone have any input as if a journal would help and also when/who did you give it to. I filed in March and filled out lots of paperwork but havent heard a thing. Not sure how long these cases may take. Thanks for any input you can share.

  • #2

    Hi Sandra,
    Just wanted to know if you got a lawyer that knows about IC......I was told that when you are looking for a good lawyer that knows about our problem and had the NORC (National Organization of Social Security Claims) I was told these type of lawyers are well informed with Interstitial Cystitis, if you haven't heard from these people get a lawyer I tried to do it on my own the first time and was denied....I applied again with my lawyer and was denied, i now have a hearing coming up to have my lawyer face to face with judge..that is probably what you will have to do...but I did read somewhere, where this little girl had wrote a note to the judge about how IC has changed her mother and changed their life together...I really would think about getting a lawyer, and find the one that you don't have to pay unless you win....If you need anymore advice...please don't hesistate to email me...we are in this together...Smile
    [email protected]


    • #3
      Sandra, good journals can help your physician document what is going on with you. I still think it is worth doing.
      Julie Beyer, MA, RDN
      IC Dietitian, Patient Advocate, Speaker, & Author

      Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

      Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

      You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

      ........ ........

      Other IC Diet Resources:

      IC Diet Webinar
      IC Diet Website
      For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
      Free IC Diet Booklet: What Can I Eat?
      Confident Choices IC Diet Blog
      IC Diet Newsletter

      *Let's Connect!*


      • #4
        I just want to state I actually went to the local SSA 4 months ago. OK. I have not heard back yet. I did not file because of IC, but I have talked to a lwayer by now. He is ready in case I do get denied. Oh! He even has paperwork from some doctors by now. I think I am supposed to get the urologist to fill out paperwork as well. (though I am not working due to degenerative disc disease) I look on the SSA website and keep getting told it is in the medical processing state. (even told that 6 weeks ago) OK. I do happen to be on retirement disability by now. (former state employee) Yep!


        • #5

          Statesboro:You do know you can file for should try that as well, I hope everything turns out well for you....

          I am going to do the void diary right before I go to hearing just in case...I hear that you should and I hear that you shouldnt....I will just keep it with me incase.....

          I am so happy I found this IC family has helped me and been very informational for me plus have pulled me out of many depressions...

          Thank you All!!!!
          [email protected]


          • #6
            I do know. I will get the urologist to fill out some paperwork or to write a statement if I do get denied. Of course, I was stating IC is not the real reason that I am not working any longer. I got on retirement disability because of degenerative disc disease. That is the reason that I have got the heating pad back on now. I don't know if the voiding diary would do much good. A urologist could look at one and be able to state how much your life has been interrupted by going to a bathroom.(or how many times) By the way, I don't even try to keep count of every bathroom vist. It just makes me want to gag too much. Yep!


            • #7
              Its me

              I know how you feel....i go so many times it makes me sick.....people think i exaggerate...and they don't understand.....but i keep heating pad on my pelvic and much pain...severe pain.....God Bless you and keep in touch, if you just want to talk or need a shoulder....
              [email protected]


              • #8
                I feel like I need to tell my story about SS. I applied 07-01-08 I received my lump sum and my first check the middle of June 2011. It was a long journey. I live in Utah and I have no idea if it is on a state by state on how long it is. I had an attorney from the very start. She only works disability cases. I wrote EVERYTHING. I kept a void diary for maybe a 48 hr period for one of my first Uros. I wrote an entire 12 year history including pain (how bad the date what I could and couldn't do). I just kept on writing and giving it to my lawyer. I thought "really, what is it going to hurt". My husband was great and we were on COBRA through my employer the whole 36 months that COBRA allows since I stopped working Oct 08. The COBRA ($1200 a month) almost, almost killed us. Yes we had a rough road but thank God for family. If you can believe my own mother doesn't believe that I have anything wrong. My in-laws are the greatest people in the world. They kept our heads above water. I'm so happy to say that I am considered fully disabled by the government. The other thing I would ask you attorney is about being deemed fully disabled partially disabled b/c my husband said they can find you partially disabled as well. I got my letter from the Admin Judge (I was denied x2 and had a hearing with admin law judge 4-11) on May 13th which was a friday. My husband brought in the mail and said hurry hurry open it so I saw that it said fully disabled but I acted like I got denied and through a fit. Man, I got him good. I wish all the best and if you want ask me anything I'll tell you.I also told the judge that I couldn't even do the basics like have intercourse with my husband w/o a whole ritual before and after. I think that shocked her. I am not modest and not shy to tell it to people.
                IC found on hydro 2/2004, total hysterectomy, rectocele and vaginal wall reconstruction 2/2004.
                I have had previous Heparin instills that worked great.
                8/2007 Pain, urgen/freq returned.
                Since then I have had weeks and weeks of instills,
                PFD diagnosed 02/2008 finally


                Fentanyl patch, Hydroxyzine, Klonopin, Tizandine, Climara patch


                • #9

                  Hi Gigisgirl,
                  I was trying to respond back to you on my phone and for some reason it would not go through....So everything you wrote and your void gave to your lawyer....did the judge see it as well? Can I ask you...did your lawyer do all the talking or did you have to say a few words...I know in my letter it says the Judge will be asking me 5 questions and if he feels that before he gets to the fifth question and is convinced..he will stop the hearing and make his ruling in my favor, I too can't have intercourse because of the pain and when I was letting family know about my situation, some thought it was a mental thing and that upset me very bad...I go to the washroom every 15 - 20 minutes...i get shooting pain in my vaginal area, pain in my pubic bone and severe back pain, plus more......I thank you for responding to this and i just need to know what to expect when i get in the court lawyer deals with IC patients, so i am glad of that and all my doctors wrote letters that i am unable to me back when you can....Thanks Again!!!!
                  [email protected]


                  • #10
                    You can apply for disability based on IC but you will most likely not get approved on IC alone. My approval letter goes in depth explaining that I was awarded disability based on my depression. She explained in depth that she couldn't award based on IC because IC was not a disease that merits disability on it's own. There is a ruling on IC but that is different than a disease that has a listing in the SSA Blue Book of illnesses. You can get awarded disability based on IC or another problem not listed in their book but it is more difficult. It is very important that you list EVERYTHING that is keeping you from being able to work any longer. You can't be shy AT ALL, you have to lay it all out there.

                    I was denied twice and I was waiting for my hearing when I got a letter from a Judge that had reviewed my case and awarded me my disability. I had to read that letter several times to be sure my eyes weren't deceiving me. In my application I included a complete calendar of days I had missed from work due to IC pain and other problems. I included a voiding diary, the letter and information that you can purchase from the ICA. You don't have to have a lawyer that understands IC, you need a lawyer that understands the law regarding disability. Most disability attorneys don't get paid unless you win your case so you can be sure that they are going to work hard for you. Also, if you go to the Dr, ER or add another Dr during the time you are waiting for a ruling be sure and let your attorney know.
                    The waiting period for approval or denial does vary by state, my state has a large backlog that they are working hard to get through. The judge that reviewed my case was from another state that must have been helping with out backlog. The process was explained to me like this (and this was from my lawyer) The first two applications go to a worker that goes entirely by the "book". They are trained to award the most obvious cases, the one's that don't fall into that area that is harder to judge. They do deny most cases, the first person and the second person to see your application are on the same level, just two different set of eyes to evaluate your case. That is why most cases are awarded at the hearing level. I have heard people say that they are trained to deny everyone and that the judges are out to get us and don't want to find in our favor. I don't believe that and my lawyer told me that the judges are compassionate for the most part and they want to make sure that those deserving of SSDI get their benefits.
                    If you are applying or in the waiting stages I know how you feel. It is so hard to feel like someone else if judging your honesty about your health. It is infuriating to get those denial letters, they are form letters but they can be so insulting. Just hang in there, you will get to the end and most people that are truly disabled do get a positive result. I am sure there are some that fall through the cracks or that there are some judges that are difficult. No system is perfect, bureaucracy certainly isn't perfect!

                    Also, talk to all of your Dr's and make sure they are supportive of your case, if they aren't DON'T list them in your application. You need to have supportive Dr's in order to let the judges know the extent of your problems.

                    There is a website called Disability Secrets that is very helpful in understanding the process.

                    I wish you all the best.
                    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