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  • considering applying for disability

    I am seriously considering applying for disability. I've pretty much used up all the available treatments in my area except for hydrodistention. I've been putting that off because of the research of possible harm to the bladder. I've tried many meds, instillations (which helped a little, but I turned out allergic to them), and physical therapy. I do the IC diet and went gluten and dairy free as many IC sufferers have recommended. I also have endometriosis. I haven't been able to work for over a year and I'm so exhausted and/or in pain to really do much at all. Do I need to go ahead and have the hydrodistention for purposes of applying for disability? Has anyone been able to get disability without having done the hydro? I'd rather not have to do it.

  • #2
    You might want to consider hydrodistention before giving up. I know there have been some negative results and that it's not the primary mode of diagnosis, but there are some who find them very helpful. I have had over forty in my 38 years with IC and I can't imagine how I would have lived without them. I have gone as little as six months and as long as two years between procedures. I had my last one in May of last year and still doing okay even fighting thorasic cancer right now.

    That said, I do encourage you to apply for benefits.

    Sending warm healing thoughts,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    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: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

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

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    • #3
      Thank you for your reply Donna. I know I have to do some more thinking about the hydro. I see my uro next week and he'll be expecting an answer to whether we'll try the surgery or not. I think you're right though about giving it once last try so I may end up saying yes. I'm just very scared about the thought of it. I'm only 29 years old and a single mother and I'm afraid I'll be one of the ones who ends up more hurt than before the surgery. I'll have to just keep reminding myself of those like you who have been helped.

      Thank you again for taking the time to reply to my question. It means a lot especially since you are dealing with a difficult situation of your own. It's so nice to have somewhere to go with people who understand much of what you're going through.

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      • #4
        My take on this is much like Donna's. I have had a few of the hydros and my IC was dx with it in 2002. I don't really notice much improvements afterwards so I haven't continued them but I do think it's worth a try. I also tried botox in a couple of my hydros and that helped tremendously but my insurance quit covering it so I had to discontinue it. I think you should go ahead and apply for disability and not necessarily wait until you have the hydro - if you decide to. It can take a while to get awarded and getting the hydro during the process would show continued care for your IC. I was just recently awarded disability so if you have any questions about the process I would be happy to talk to you or tell you how it went for me. Good luck with it! It is a huge load lifted when it comes through!
        Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
        _____________________________

        DX: IC - November 2002 after hysterectomy
        Interstim implanted March 2006 - died May 2011
        Interstim replacement June 2011
        Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
        Docs: Pain management doc, urologist, family practice

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        • #5
          Thank mom w/ic. It's been a difficult decision to make and I keep flip flopping on it. I like the idea of beginning the process and then doing the hydro in a little bit. My uro gave me three more months to think about it and then we will revisit it. That's perfect timing for me to start tackling the application.

          Thanks for your offer for support during the process, I may end up taking you up on that!

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          • #6
            I'm not able to work either. Where do I start applying? Just the cost of the meds is hurting my family.

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            • #7
              You can apply right on the internet. Just look up social security in your state and it will lead you to the right forms. Most people get denied at first. That's when I got a lawyer and was awarded SS on my second try. Sometimes it takes people longer. The SS forms are lengthy, but it's good to get started now. It can be a long process. Best of luck.

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              • #8
                I found this estimator tool on the state website and it said that my husband makes too much money for me to qualify?

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                • #9
                  massagefever

                  Hi. The information you came across was probably for SSI which is supplemental security income for those that are disabled AND fall below a certain family income level. Qualifying for regular SSDI (social security disability insurance) is not based on family income, only your medical situation (plus you have to have earned enough work credits over the years based on your age to be able to qualify for the social security benefits). Hope that helps!

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                  • #10
                    I am on SSDI, what are work credits? Ive never heard of them.

                    One of the main reasons the Judge gave me my SSDI was because of my consistency with the information i gave to my doctor. Even though this doctor did not believe I had the pain I said I did. I was consistent with what I reported every time.

                    The other thing that gave me my SSDI was the fact that I can not go longer than one hour with out going pee, and that is on a good day.

                    The Judge had a WFSE Work Force Safety Employee there and he said that no one would hire me if I had to go to the bathroom every hour.

                    The fact that I have pain all of the time didnt seem to really matter, nor did the lack of sleep do to peeing 5+ time s a night.

                    They didnt even seem to care that I had a one time lift only of 20lbs on my medical records do to all of my operations. I cant lift consecutively at all. I am unable to bend to pick up anything (lol you should see my house.)

                    I was turned down by SS 3 times then they sent my case to a ND judge. So if you get turned down...try and try again.

                    I did have a Lawyer get my case together for me (paper work and all) other than presenting me to the judge the Lawyer didnt do anything. He didnt even know how to say Interstitial Cystitis so I said you can just call it IC, he seemed relieved at that.

                    Try and try again

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                    • #11
                      Thank you so much!

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                      • #12
                        The ICA used to have a SSDI packet. IDK if they still do...???

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                        • #13
                          If the lawyer doesn't know what IC is, you might want to shop around. We were denied (of course! everyone is!) on our first app which we did ourselves, and then found a lawyer who was familiar with IC, but was doubtful, IC had just been classified as a disability. He was within our state, but we never met him. We just talked on the phone and through paperwork, he was wonderful and sympathetic, and his staff was fantastic. You don't have to hire the first one you talk to, and if he/she doesn't know what IC is, I would keep moving. By the way, our lawyer got our SSD through within 3 months, no hearing or anything, and the judge went by the papers he filed and went back two years, so Bob was immediately on Medicare as well. You've got to have a lawyer who cares, so important. Good luck! Jill, wife of Bob

                          Also, work credits just say how long you worked and what you have earned. If you worked under your social security number (had taxes taken out, etc) you should get a letter from the SSA a few months every year before your birthday which tells you what you are eligible for should you become disabled.

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                          • #14
                            I was just awarded SS for my IC. I was denied several times through the mail. I ended up having to go to court last month. I did not have a lawyer. The judge asked me several times if I wanted to get a lawyer and reschedule. I said no. I told him that I wanted to do it on my own. The judge asked me why I feel that I am unable to work. I replied that when my bladder is flaring..I am confined to the bathroom and my bed. I told him that I go to the bathroom at least every hour. I was completely honest and told him how the disease impacts my life on a daily basis. The judge asked if I could be a cashier. I said no because I could never leave my register to go to the bathroom. The judge then gave me paperwork for my DR. to complete. At the end of the hearing, I began to tear up. I told the judge that I feared if I was to get social security, I would never be able to work again. I recently graduated college and would love to enter the workforce. The judge said that there are many people who go back to work after collecting SS benefits. He also said that I could work while on Social Security, as long as I keep SS informed. He was a very nice judge. I then went to the DR and the only restriction she put was for me to have unlimited bathroom breaks. The Social Security office sent me a letter a few weeks later saying that I was approved for benefits. I was a little shocked at first because I am only 27 years old and I did not have a lawyer. I was fortunate to have a nice judge who was willing to listen and give me encouraging advice for my future. My advice for all is to not give up and stay strong. It's a long process, but worth it in the end. Also, realize that being on SS is not a life sentence. You will one day be able to return to work. If anyone needs advice, feel free to message me.

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