Category: Blog
Posted: 04/15/2010 01:16:00 AM
Views: 19571
Comments: 17 [
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Synopsis: Hot News! - The Social Security Administration is "adding interstitial cystitis as a diagnostic category with the impairment code 5950 for completion of pertinent items" on various SSA forms and reports.
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sherry S.
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04/16/2010 05:58:43 PM
I am so very excited over this... like with many others with I.C. After being diagnosed with IC in 2001, I tried to continue to work. Unfortunately, I was unable. I applied for my disability and was denied over and over. Finally I used the appeal process until I was before a judge. I represented myself. I sat before him and explained my issues. The judge listened and asked many questions .. his final question was this ...' HOW MANY TIMES DO YOU URINATE AN HOUR OR DAY?" when I answered some days I will urinate as many as 10 time an hour ... the judge looked amazed. There was an employment specialist there to explore whether or not I could be retrained or work at all. She told the judge that there would NOT be any employer that would hire me because of my medical condition. That was it .. my disability was approved after 6 years of fighting... crying and worrying about how I was going to provide for my children. I am hopeful that with new ruling the next person that needs their disability monies will be able to receive them easier than I did !! If for some reason you are denied ... FIGHT.. FIGHT.. AND APPEAL!!! ADVOCATE FOR YOURSELF AND YOUR RIGHT TO OBTAIN SOCIAL SECURITY DISABILITY!!
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Angie V.
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04/25/2010 11:51:51 AM
I am very proud of Sherry S! thank u for standing up for yourself, your family & all of us!
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Marni
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05/20/2010 01:21:59 AM
I had my phone interview the other day and they asked me if I was diagnosed with IC (also in 2001) why I waited so long to apply.! I said I like you tried to continue to work over the years but lost every job due to to many bathroom trips! I am hoping my SSI goes though and they told me 120 business days for decision in CA. I also had them note that I would meet with who ever and when to explain what we deal with on a daily basis!
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Marti L.
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09/28/2010 08:32:36 PM
I filed for disability on November 1 of last year. As everyone is, I was denied within 30 days. I ordered the "how to" packets from the IC Network, had my doctor write a letter supporting my case, went to an established disability lawyer, and was approved for benefits on April 7 of this year. The advice from the IC materials was right on the money and I would encourage anyone filing for disability to use those guides. I believe that the letter from my doctor tipped the scales for me. I hope that all of you who are filing will be able to find a good doctor who will support you in this venture.
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p walker
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10/30/2010 12:08:25 PM
I HAVE JUST BE DIAGONOSED WITH ICN , AND I JUST WANT TO TRY AND DEAL WITH IT BECAUSE I FEEL IF I EAT ANY KIND OF FOOD THIS FEEL FARE IT UP , PLEASE HELP WITH SO ADVICE INDEALING WITH HOW TO EAT RIGHT.
ICN RESPONSE: Thank you for your comments! We suggest that you visit our main support website THE IC NETWORK where you can find practical information to improve your bladder discomfort. Use the following links to:
* READ EDUCATIONAL LITERATURE;
* ASK QUESTIONS IN OUR SUPPORT FORUM;
* ATTEND LIVE SUPPORT GROUP MEETINGS;
* LISTEN TO GUEST LECTURES;
* Or WATCH OUR EDUCATIONAL VIDEOS!
* You may also call our support line at 707-538-9442; and/or
* PURCHASE PERSONAL COACHING by Jill Osborne, Julie Beyer, Diana Brady or Heather Howard!
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jennifer
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06/15/2010 11:54:12 PM
I have been through hell with i.c., my life has totally changed and right now my pain is so bad that I don't have much of a life. I feel like a guinea pig with all the meds the drs put me on then i have to stop them because of all the side effects. I'm also trying to deal with the pain without pain meds. I'm glad SSI is finally seeing what a devastation to your life i.c. does to you. love and blessed be, Jennifer
ICN Response: Have you found our pain management and self-help strategy resource centers? There may be some options you haven't considered yet. Please visit the ICN Pain Resource Center and ICN Self-Help Strategy Resource Center.
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Della M.
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06/22/2010 08:15:50 PM
I was recently approved for Social Security Disability. I applied in October 2009, so it took about 8 months. I have had IC since pre-2003 and was awarded disability retroactively to May 2008. I will be eligible for Medicare in October 2010. These are all things that will help me pay for my continued treatment. It will be a big help! Before completing my SSD application, I purchased from ICN their disability package, which had some really great advice on how to make your first application really complete, in the hope that you would get accepted without having to go through an appeal process. My SSD application was accepted without having to go through an appeal. It did take a lot of time and effort, and I felt the whole time that I would be rejected since IC wasn't on their included list of conditions, so felt like I was probably wasting my time. My husband pressed me to keep the effort going. I was eventually required to see a psychologist and medical doctor. I am 63 years old. I see IC was added to Social Security's list of conditions in January 2010, which is a big help. All I can recommend is that you order the ICN's SSD package. It is really worth it. Then locate all of your medical records, do everything requested by SSD, and don't give up! The reward of receiving help by being on SSD is worth it!
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nikkiquinn
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06/23/2010 09:45:01 PM
I was just diagnosed and I am already getting flack at work about handicap parking. I thought about filing for disability. I've stressed so much I've even had a stroke. I can do my job but it is hard. I don't know if I have enrgy to fight or if we can live off disibility.
ICN Response: Wow... someone is complaining that you are using a disability placard?? Many patients with severe, disabling IC do.
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Jeannette F.
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07/04/2010 12:33:58 AM
I have IC and have learned to live with it for over 18 years. I need help. I had cancer last year and it's bad again. I'm on Elmiron? I need to talk to some one. Thanks, Jeannette
ICN Reponse: please sign up for a COACHING SESSION with Jill - she would be happy to talk with you.
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Felisia E.
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10/11/2010 07:15:23 AM
I have an appointment on the 18th oh this month. I have not been to the doctor in a while because I lost my medical. I wonder if that will cause them to not approve me for that. I am not sleeping at all at night now and I need my meds.
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Sue
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08/31/2010 10:31:28 PM
Does anyone know what is going on with Botox? Has it been approved and/or does it work?
In order to apply for SSD, do you have to be out of work?
ICN RESPONSE: Botox research is continuing and it is now being used in Urology Clinics around the country. Federal Social Security Disability requires that you are unable to work. State Disability, however, tries to encourage you to return to work. Learn more about both in the ICN Disability Resource Center.
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Bob's wife
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10/24/2010 02:36:23 PM
In response to the SSA and disability, we had applied by ourselves on behalf of my husband, who suffered from depression, a suicide attempt, COPD and was seeing a urologist since 2008 for urinary problems, but had been suffering for a few years before. Anyhow, after prostate reduction therapy where 30% of his prostate was removed, we returned to the urologist for continuing problems, to which the doctor stated "I didn't think that was going to help you." OK. He then administered the instillation test in office and proclaimed my husband had a "pretty bad case" of IC. In the meantime, hub had been denied his disability app and we turned to an in state lawyer, who was reluctant to make IC a primary reason for disability. Hub was spending his life in bathroom, at least every hour around the clock, and on bad days 4 times an hour, and taking time to go as he strained and had to try to relax to go, and not voiding completely, which then led to retention. He was in constant pain. Lawyer appealed our denial, was denied again (which is pretty standard) and eventually got it in front of administrative law judge. The lawyer was pessimistic about IC being a disability but knew there were SOME cases that had been approved. We were preparing to appear for testimony, when suddenly the judge granted hub's disability on paper, and backdated it to when he first started having problems. From the judge's written decision, he became very informed on IC from the urologist and the disability advisor, and seemed amazed that hub's disability was not approved sooner. The IC was probably 50% of his disability approval. So hopefully we educated the lawyer, the advisor to the judge and the judge himself.
Talk to a disability lawyer, it doesn't cost anything and he/she will not get paid unless your claim is approved. Make sure lawyer is familiar with IC and does not poo-poo it. Recommend someone in your own state and make sure urologist is on your side. Be patient as it takes some time (for us 1 1/2 years). Also, as judge backdated hub's disability 2 years, he bacame elegible for Medicare right away, which certainly perked up all of doctors' interest as we had been on charity care prior. Good luck, hang in there and fight.
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Angela
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11/06/2010 06:38:08 AM
I applied for SSD in July 2009 after being fired from my job for attendance. Worst part was that my doctors had me out. I just got awarded SSD retroactive to Feb. 2009. I went through both appeals and got my letter saying that I would get a hearing date. The judge pulled my case early and called my lawyer. A month and a halfish later I had my backpay in my checking account. It was a tough fight...did I mention that I am in my early 30's and well educated? I have a difficult time imagining being disabled for the next 60 or so years.
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dietra
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11/09/2010 10:37:26 AM
I am reading your comments about the social security adm. I first need to find a good doctor. i live in Florida and have tried to access specialist through your website. I have not found any in florida. Perhaps you can direct me to other listings for doctors.
Thanks!
ICN RESPONSE: Thank you for your comments! We suggest that you visit our main support website THE IC NETWORK and ASK THIS QUESTION IN OUR SUPPORT FORUM!
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barbara s.
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12/27/2010 08:48:45 PM
I applied for Social Security Disability in Dec. 2006. I was approved in May 2007 and given retroactive payments to December 2005. In Dec. 2007, I was given Medicare. My doctor provided a detailed report of my IC and I wrote pages describing my symptoms and how my life was affected. I had left work in December 2004 but it took me two years to get up my courage to apply. Please don't wait as I did. I wish you all the best.
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Lisa S.
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12/29/2010 07:49:02 PM
I have been diagnosed with IC since 2002 - probably had it longer but didn't know it. I have tried to apply for SSI but was denied, I would like to try again but when I tried before they said I didn't have enough hours in SS. I thought that didn't matter because when you are in pain and you still can't work part time we need to have the money with this economy.
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Lynne L.
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05/21/2011 04:32:53 PM
I applied for SSDI Feb, 2010 and of course wad denied the first time even thought they said I had "severe interstitial cystitis" and could not do my previous job. They said I could lift 10 pounds and sit for long periods so I could find another job. I NEVER said that. I can't life 10 pounds without my pelvis blowing into a million tiny pieces. I said 2-3 pounds. I also said I could only sit for no more than 15 minutes. I will hang in there and fight. If I have to bring every person I know who knows my pain day in and day out, I will put them on the stand. I have excellent Attorney who has been an SSDI Atty. for 30 years. Dammit, I'll make it and I will scream to the high heaven's when I get that letter. What an unbelievable long process. Lynne
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