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  • explanation of terms

    can anyone explain the different terms for me? I have heard of SSI and disability and permanent disablity and state disability and I am sooooooo confused! what's what and what do they all mean and what recourse might I have since I am on state temporary disability and once the maximum benefits are met there is no more and my uro says no way am I ready to return to not sure where to turn or how to proceed..thank you all so much,

  • #2
    Hi LoriZ,

    I'm familiar with 3 different "types" of disability.

    Social Security Disability A.K.A. SSI is from the US Govt. It sounds like you should start pursuing this. You can call you local Social Security office to start the paperwork. It sounds like you have a supportive Dr who will help you. You can get booklets from the ICA to help you through the process. Some people hire lawyers, but most ICers don't hire a lawyer unless they have to go through an appeal. I was lucky and got approved on the first try.
    State disability varies by state. Some states don't even have it. CA state disability lasts only one year.
    The third type of disability that I'm familiar with is private disability insurance. I currently receive funds through this type also. I had this insurance through my employeer (now former employeer). Most people don't have this coverage. In my experience, it's much more difficult to get these benefits because they constantly challenge you and your Dr to prove disability.
    Keep us posted on your progress!
    take care,


    • #3
      Hi melanie,
      Thank you for responding to my post.
      My uro is really trying to be supportive but he also believes in exhausting every possible ooption before saying "ok it's time to consider permanent disability". The problem for me is that my state temporary disability benefits will run out before that can happen. Also, I am deathly afraid of the next step...instillations...can i ask you some questions? If you have time and can tell me your story...did you try all options medically first before applying? Do you have any other medical conditions with the IC? I only have IC none of the other problems alot of these poor people on this board suffer from. Is it possible to apply but keep working some type of job part-time as it is being processed (due to money probs)?
      that's it for now..don't want to overwhelm or take advantage of your e-mail is [email protected] if you prefer to write to me that way...thank you so much!
      hope you have a great day,


      • #4

        I'm on disability and have been since 99....its a long a complicated if you want to email me...please do and I'll be happy to answer questions if I can.

        my email is [email protected]



        • #5
          Hi Lori,
          I wouldn't necessarily call Social Security "permanent disability". The reason I say this is because most people are reviewed every 1-3 years. If your Dr is concerned about this issue, here's what I would suggest. Ask him to start the SS paperwork because your state disability is about to run out. Ask him to suggest to SS that you are reviewed in 1 year. That way he won't feel like he's putting you on it permanently and it gives you a chance to try more treatments. I think this is what my Dr did.
          As for my treatments, I've been through most of them. Actually, right now I've run out of treatment options until something new comes along. Call me a "veteran". But I had not tried everything before he started SS paperwork.
          I went on disability because I simply couldn't work. I missed so much work because of IC, they were threatening to fire me. So I went on disability insurance and then state. When state was starting to run out, I applied to SS. Actually, my disability insurance required that I apply for SS.
          I have been through a couple different types of instillations. I've done DMSO and Lidocaine (seperately). For the Lidocaine treatments, they taught me to self cath. It helped me alot. For me, it's alot less painful to do it myself. If you are worried about cath pain, this could be an option for you. I suggest posting a message on the instillation boards. There are alot of ICers there who have had success with instillations. They can help you with this!
          I have IC, PFD, IBS, TMJ, and depression. The depression is directly related to the IC. As far as I know, the IC is the primary reason for disability. Depression is probably secondary. The other issues are not relevant to disability.
          I don't think you can work (even part time) if you are going for SS. But I'm not 100% sure on that. I suggest calling your SS office to get the paperwork going and contacting the ICA for their workbook and helfpul documents.
          Please ask if you have any more questions!
          take care,


          • #6
            Hi Lori:

            I agree with Melanie; apply for SSD NOW. (Even if you haven't worked enough quarters in your lifetime to qualify, then you will probably be eligible for SSI.) I live in RI which is one of the states that makes us pay into TDI (temporary state disability insurance). Thank God I had that income WHILE I was awaiting the SSD because my louse of an ex-husband walked out on me right about that time.

            In addition to IC/neurogenic bladder, I have a bad back (2 back surgeries within the last two years), IBS, and of course, depression. When I first received my reward letter, I was told that my case would be reviewed in a year's time. (I guess because I am so young and was about to have a second back surgery that might have helped). Anyway, that review has not happened thus far, and though I hate dealing with the lovely folks at SS, I'm not worried about it because I am in NO shape to go back to work and I'm sure my doctors will back me up on that count.

            Lori, the redundant and ridiculous paperwork you have to file is a nightmare, so I would advise you to get started as soon as possible. Get copies of all your medical records and be VERY specific about how IC is affecting your life (all aspects such as sleep deprivation, depression, anxiety, etc...) Also, it helps to keep in touch with the caseworker that will be assigned to your case. He or she can give you a bi-weekly status on your application and inform you if stuff hasn't been sent in that needs to be in the packet before it is reviewed. Honestly, getting everything in to them is the worst part - especially if you've seen multiple doctors for different conditions (doctors are very busy after all and most hate filling out the tedious forms). Anyway, best of luck to you! I hope you get approved right away like I did. (It does happen.)

            Take care,
            Lynne :cool:


            • #7
              Thank you Melanie & Lynne, for your great and informative responses to me...I am in such a quandry but I believe you are both right in telling me to get started...I am going to think about it some more over the see, I am concerned because I have read so many nightmare stories about trying to get SSD and stress is my worst trigger for will I cope with that? also, I have IC and not other medical doctor only..a uro...what do you think my chances are really? Both of you have made me so happy tonight that you took the time to write to me in such detail...please have good weekends and take care...
              All my best,
              p.s. and I do believe that I can ask more questions because you both seem to be so kind and caring....


              • #8
                I can't even guess what your chances are. I've heard so many different stories. It seems all of our situations are very unique and can vary alot. But it's worth a try!
                I recommend getting started. Check out the ICA website to order the paperwork. It'll help you alot. Keep copies of everything, because they'll repeatedly ask you the same type of question in different ways. And have a frank conversation with your Dr. Many ICers have written in depth letters to their Dr's describing how much IC impacts their life, why they can't work and all their limitations.
                Stress is probably the biggest factor for me with IC flares. Honestly, I'd be alot more stressed out if I didn't have income. Remember to tell your Dr and SS that stress has a huge impact on your health and that's one reason why you can't work. This was a huge factor for me!
                Take the weekend and relax! Let me know when more questions come up.
                take care,