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I got my denial letter.

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  • #16
    I have to tell you I was horrified reading your post Glenda. Positively horrified that there would even be a question mark in your case. You should have been approved from the start. I am truly stunned and ashamed that we treat our sick the way that we do here in the USA. Its disgusting.

    That said I have to tell you that they do not have an automatic system where you are denied three times. Some women got it on their first try out because I have read their posts in the past (and they got it just based on their IC alone). It is not normal to wait 6 years although there is a waiting period that's for sure (and there are some extreme cases of course). Your case is VERY extreme in every possible way and I am sorry you had to go through all of this. You should not have had to. Its outrageous. Not getting an attorney is not a very smart thing to do. I say this for good reasons. Yes some got their cases approved without an attorney and because they chose that route, they paid dearly with a much longer waiting period than normal. They are usually played around with a lot more than if they had a "name" behind them. They get discarded like trash and put at the bottom of the totem pole. If you study all the cases as a whole (not just a few incidents, but IC cases in general and disability cases in general), people always did much better and got results faster with an attorney. I have to state the obvious because its true. They are less likely to mess around with law firms and dismiss those cases as easily because they know they are in for a ride and they pay closer attention. Attorneys charge you nothing up front and only take a percentage of your back pay if you win. I have heard time and time again that you are playing it reckless without an attorney and I believe this with all my heart and soul. I was completely ignored and denied the first time and yes most people are denied on their first try out (but not three times and more as by then most people get an attorney on contingency). When I finally caved before appealing the second time after learning what I learned and doing some research and getting a name behind me, not only did I win the second round but they decided to not put me through a hearing. I can't emphasize enough how important it is to at least try to get an attorney. You are paying for a name, but that name can make all the difference in the world.
    Medical Conditions:

    Severe IC
    IBS
    Vulvadynia
    Fibromyalgia
    GERD
    Polycystic Ovarian Disease
    Hypothyroidism
    Hashimoto's
    Epstein Barr
    Insulin Resistence
    Gout
    Breast Cancer survivor
    Monthly Vertigo (near periods)

    Current medications:

    Elavil 50mg
    Neurontin 300mg-600mgs per day
    Librax (lifesaver) as needed
    Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
    Hydroxyzine 25mg's
    Azo Cranberry 3 tablets per day
    Cipro as needed to keep UTI's at bay
    Xanax 1mg at night for sleep
    Levothyroxine 1.75 per day
    Prevacid 30mg's per day
    Zantac 150 mgs per day
    Mucinex 600mg's for Fibro
    Diflucan 150mg's after each period
    Goldenseal to keep UTI's at bay (it works)!
    Prelief as needed

    Comment


    • #17
      I fought this on my own without a lawyer because I didn't have any money to hire one.

      And after 6 years rolled by , I contacted a Senator here in My State.
      Bless her heart , she happily took on my case , and got in touch with a SS Law Judge friend of her's.

      He gladly accepted my case and Flew from Chicago to Seattle to meet with me.

      My medical file was as thick as a water melon is long. Over 20 years of medical proof.

      Bless my X-primary Care doctor , he came to court with me.
      He said I am 100% disabled from thousands of tumors on and in my body.

      I did win my case.

      That $300.oo a month is before they Tax you and take out medicare and what ever else they can take.

      I get $179.oo after all that.

      The judge wanted to back pay me , but SS over ruled his decissions and wouldn't allow it.

      These people do not pay out money willingly to any body.

      You have to fight like hell for it.

      If a person has a tumor disease like I do , and you are riddled with tumors inside and out , I even have dozens of them on the soles of my feet , so walking is horrible because the tumors get smashed all the time.
      You can't take them out or you can't feel your feet from nerve damage.
      Same with any where else on your body. Major nerve damage.

      For those of you ladies that are able to get SS Disability for IC , you are Darn Lucky ! I envy you greatly.
      I barely got disability for having a Tumor disease.

      $300.oo a month minus tax's is a slap in the face , my opinion.

      But it is better then zip I guess.

      Comment


      • #18
        Glenda,

        Maybe you were not aware of this, but you do not need money for an attorney when it comes to a disability case. They take it for free and especially when they can see an obvious case where they will most likley win (and yours screams of a win one way or another). None of us had to pay for our attorneys unless we won and then they take a percentage of the back pay ONLY. Most cases have back pay coming because the process itself takes time so they would have only taken money out of your back pay (not whats coming to you on a monthly basis). They also fight to see that you get that back pay and that your case is made retroactive to when you can first prove you were disabled. I just about died just now when you said that you were not awarded back pay! I rest my case...how sad. If anyone had an ultra strong case for back pay, it was you. Unreal. Absolutely unreal and just incredibly sad...wow.

        You did not have the upper hand so they walked all over you (trust me an attorney would have gotten someone like you back pay). This should serve as warning that its a really good idea to try and get an attorney and if they will not take your case, at least you tried. People need to hear these stories when they are just about to file so that we can learn from them and hopefully avoid certain things if possible. My attorney told me that they are denying people who fought in Iraq for crying out loud until they finally got an attorney and suddenly they sit up straight and take notice. It should not be this way, but it is this way. I thought I could do it on my own too and suddenly realized that I could be at this for years unless I got one and finally did. I was also awarded a couple of years of back pay because my attorney fought to make that happen (that's the only way they get anything so they fight and they fight hard).

        Again terribly sorry for all you have been through. I underwent cancer treatment not so long ago and have a very severe and painful case of IC as well as Fibro (I understand nerve pain). We are all suffering in different ways which is why we had to file for disability. You sound like you have been through a nightmare. I'm so sorry and hope that things will get better for you somehow.
        Last edited by ICPrincess; 11-30-2009, 07:17 AM. Reason: darn typo's
        Medical Conditions:

        Severe IC
        IBS
        Vulvadynia
        Fibromyalgia
        GERD
        Polycystic Ovarian Disease
        Hypothyroidism
        Hashimoto's
        Epstein Barr
        Insulin Resistence
        Gout
        Breast Cancer survivor
        Monthly Vertigo (near periods)

        Current medications:

        Elavil 50mg
        Neurontin 300mg-600mgs per day
        Librax (lifesaver) as needed
        Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
        Hydroxyzine 25mg's
        Azo Cranberry 3 tablets per day
        Cipro as needed to keep UTI's at bay
        Xanax 1mg at night for sleep
        Levothyroxine 1.75 per day
        Prevacid 30mg's per day
        Zantac 150 mgs per day
        Mucinex 600mg's for Fibro
        Diflucan 150mg's after each period
        Goldenseal to keep UTI's at bay (it works)!
        Prelief as needed

        Comment


        • #19
          Thankyou for your kind replys.

          I would love to have had a Lawyer fight for me. I just didn't have the money to hire one. And on the off chance I did win , and I were fortunate enough to recieve back pay , I did NOT want to share it with a Lawyer.

          The Judge that tried my case did want to back pay me , but the higher up SS officials Denied his ruling for that part of the claim.

          I know many lawyers will work for free (so to speak) but they don't like it.
          They want to get paid for all their hard work and time spent on you and your claim.

          I think the thing that clenched the deal for me winning was > My Doctor came with me to court.
          He took a day off of work from see'ing his patients , and he came with me.
          The Judge listened real carefully to what the doctor told him inregards to how ill I really am from this disease.

          But $300.oo a month is Dispickable. A slap across the face.

          People that deserve the SS Disabilty don't get it , or recieve very little.
          And the one's that Don't deserve it and could be faking , they get Thousands per month.

          Something is wrong with the System.

          Fight like hell to get your disability ladies ! Appeal all denials.
          Even contact your State Senator and ask for help. I did. It worked*

          Never give up Hope.
          Last edited by ICNDonna; 11-30-2009, 11:21 AM.

          Comment


          • #20
            I just tried to order that "packet" and my computer said that was a problem with the security on that website. Anywhere else we can go to order the packet?

            Comment


            • #21
              LW,

              I think they have a number listed somewhere on their site. Maybe you can just call and order it? They are the only place I know that sells it.

              hugs and blessings
              MARY


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

              Comment


              • #22
                I didn't even know you could order it from the web site (and my Firefox browser does that sometimes too for no apparent reason with many well known sites).

                I had to call and they were very helpful and kind. They take down information from you so that they can prepare a letter on your behalf along with the packet to give to SSDI or to present at your hearing, etc. That packet was worth its weight in gold. I was serious when I said that my attorney told me that it literally gave us our case. He had to do almost no work, but having his "name" behind it, packed that extra punch and I got years of back pay and everything that was due me.

                He told me to never lose that packet because I may need to use it again in the future with disability and trust me I won't! The team of attorneys that created that packet were genius. Its a very lengthy and extremely comprehensive case for people with IC all in one document. Would have paid hundreds for it, but it was something like $30.00 or so when I got it. Thank god for the ICA and for this place (ICN) or we would be lost completely. Huge sources of help and comfort for those of us dealing with these issues.
                Medical Conditions:

                Severe IC
                IBS
                Vulvadynia
                Fibromyalgia
                GERD
                Polycystic Ovarian Disease
                Hypothyroidism
                Hashimoto's
                Epstein Barr
                Insulin Resistence
                Gout
                Breast Cancer survivor
                Monthly Vertigo (near periods)

                Current medications:

                Elavil 50mg
                Neurontin 300mg-600mgs per day
                Librax (lifesaver) as needed
                Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
                Hydroxyzine 25mg's
                Azo Cranberry 3 tablets per day
                Cipro as needed to keep UTI's at bay
                Xanax 1mg at night for sleep
                Levothyroxine 1.75 per day
                Prevacid 30mg's per day
                Zantac 150 mgs per day
                Mucinex 600mg's for Fibro
                Diflucan 150mg's after each period
                Goldenseal to keep UTI's at bay (it works)!
                Prelief as needed

                Comment


                • #23
                  That's really nice that some of you are able to get SS Disability and recieve back pay for IC.

                  I think getting it depends on who is the person working your case file.
                  (The Pencil pushers )

                  With my $300.oo a month minus tax's and medicare , I get $179.00
                  That's a slap across MY face.

                  Comment


                  • #24
                    I'm on Social Security and Medicare is deducted, but no taxes.

                    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.

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                    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

                    Comment


                    • #25
                      Glenda,

                      That is pretty sad. Did you ever work and pay in to SS? Yes, I too get a penalty for being married. I pay 15% taxes at the end of the year. And last year my medical expenses were $3000.00 more for the year than what I recieved for the year.

                      But thank God!

                      hugs and blessings
                      MARY


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

                      Comment


                      • #26
                        Originally posted by Glenda2 View Post
                        That's really nice that some of you are able to get SS Disability and recieve back pay for IC.

                        I think getting it depends on who is the person working your case file.
                        (The Pencil pushers )

                        With my $300.oo a month minus tax's and medicare , I get $179.00
                        That's a slap across MY face.
                        It is sad because its not the case workers who help you with back pay. In fact if anything, its the case workers that try to weasle you out of as much money as they can (that's part of their job). I've read two very well known books on SSDI as well as spending countless mind numbing hours researching SSDI online while I was applying, and the things that I learned were sickening. One of the pieces that stood out for me at the time was from a man who used to be a disability case worker/examiner for many years. He said that they absolutely pressure you to keep your numbers of approvals under a certain amount and that if you are helping people too much, you could be up for a review yourself!

                        They make remarks against the judges that help people get approved and call them soft. Attorneys are like RAID for disability case worker vermin. They see an attorney's name and think oh brother, this one's going to take a lot of time and effort and we could end up spending more to deny them, than to just approve them and give them what they want. Nearly every reference or book or anything I have ever read on SSDI screams to get an attorney. They tell you straight out that you could be waiting for years without one and end up with the barest of benefits when its all over. The Spanish have a saying "the cheap comes out expensive" and had you used an attorney, someone like you could have won tons of back pay and that's the sad plain and tragic truth of it. I know that won't make you feel too good, but its the honest truth. They saw you coming. That's great that a senator or congressman helped or whoever it was, but an attorney is going to fight to get you back pay so that he gets paid because without it, he gets nada...nothing.

                        Attorneys only take disability cases that they think they have a chance of winning and they do it for the BACK PAY. You have serious issues that go back years and years and you might have ended up with quite a tidy sum, even though your monthly benefits are next to nothing. You suddenly don't mind that an attorney took $5,300 (the max allowed last I checked) out of $30,000 that he won for you in back pay!

                        You case is truly tragic and I mean that sincerely. I really do feel for you. I wish things had come out better for you.
                        Medical Conditions:

                        Severe IC
                        IBS
                        Vulvadynia
                        Fibromyalgia
                        GERD
                        Polycystic Ovarian Disease
                        Hypothyroidism
                        Hashimoto's
                        Epstein Barr
                        Insulin Resistence
                        Gout
                        Breast Cancer survivor
                        Monthly Vertigo (near periods)

                        Current medications:

                        Elavil 50mg
                        Neurontin 300mg-600mgs per day
                        Librax (lifesaver) as needed
                        Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
                        Hydroxyzine 25mg's
                        Azo Cranberry 3 tablets per day
                        Cipro as needed to keep UTI's at bay
                        Xanax 1mg at night for sleep
                        Levothyroxine 1.75 per day
                        Prevacid 30mg's per day
                        Zantac 150 mgs per day
                        Mucinex 600mg's for Fibro
                        Diflucan 150mg's after each period
                        Goldenseal to keep UTI's at bay (it works)!
                        Prelief as needed

                        Comment


                        • #27
                          Yes I did work and paid into the so called "system" for years and I had more then enough points to qualify.

                          I had to quit work in 1991 because My spine is so Full of Tumors and then the Pain from it is Extensive.

                          Brain Tumors , (wicked Headaches) . Left Lung Tumors. Thousands of Tumors all over my body on the outside.
                          Then the inside is full too.

                          I did NOT want to Hire a Lawyer because I did NOT want to share my Back Pay with him if I won my case.
                          I fought this on my own all the way , and did Damn good at it.

                          Plus contacting a Senator helped my case.
                          Plus my doctor came to court with me and told the SSA Law Judge How sick I am from this disease.

                          And I did Win , and he wanted to Back pay me.
                          But the higher up Muck-E-Mucks said NO Back Pay.
                          So that portion of his Ruling was over thrown.

                          I busted my butt for $300.oo a month minus Medicare and Tax.
                          $179.00 a month is a joke.
                          It don't pay for my pills.
                          Let alone buy gas to go to the doctor's I need to see.


                          For those of you gal's that get disability for IC , and even get awarded Back pay , that is Great for you.
                          You are more then fortunate !!!

                          I should have never been denied a first time.
                          But I was > 3 times.

                          The system stinks. ( My opinion ).

                          Those that need and deserve it get Zip.

                          Comment


                          • #28
                            There is none so blind as she who will not see. I wish you well and hope things get better for you. Hope you have a nice holiday at least. Good luck to you Glenda.
                            Medical Conditions:

                            Severe IC
                            IBS
                            Vulvadynia
                            Fibromyalgia
                            GERD
                            Polycystic Ovarian Disease
                            Hypothyroidism
                            Hashimoto's
                            Epstein Barr
                            Insulin Resistence
                            Gout
                            Breast Cancer survivor
                            Monthly Vertigo (near periods)

                            Current medications:

                            Elavil 50mg
                            Neurontin 300mg-600mgs per day
                            Librax (lifesaver) as needed
                            Percocet (1) 325mg for rescue flares only (usually 2-3 per month)
                            Hydroxyzine 25mg's
                            Azo Cranberry 3 tablets per day
                            Cipro as needed to keep UTI's at bay
                            Xanax 1mg at night for sleep
                            Levothyroxine 1.75 per day
                            Prevacid 30mg's per day
                            Zantac 150 mgs per day
                            Mucinex 600mg's for Fibro
                            Diflucan 150mg's after each period
                            Goldenseal to keep UTI's at bay (it works)!
                            Prelief as needed

                            Comment


                            • #29
                              I have been Denied 2 times.

                              Comment


                              • #30
                                I STRONGLY advise anyone who keeps getting denied to get a disability lawyer. They do not charge you unless you win your case..
                                Hugs
                                Ronda

                                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                                Link to Patient Handbook:
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                                Diet Reference Sheet:
                                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                                Meds I have Tried:
                                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                                Lexapro< Bad reaction to this med!
                                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                                Dx With IC in Nov 2006 with Hydro/Cysto
                                Hydro/Cysto Caused Bladder to Rupture.

                                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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