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I could really use some help!!!:(

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  • I could really use some help!!!:(

    Hello everyone would anyone be interested in writing about their life with IC for me to take to my ALJudge hearing??
    Here is my email address if your interested in helping please email for my address the letter will have to be noterized I will pay for that and postage.
    [email protected]
    Thanks so much I have learned alot from this site.
    I started another round of DSMO with added elmiron this time hoping that helps.
    I always feel like I have the flu the next day
    Thanks DebraLee.
    Be grateful when you are feeling good,and graceful when you are feeling bad

  • #2
    hi debra, what kind of hearing is this? is it for ssd? I never knew it would help your case to have other icer's storys. pleas let me know. I do what I can to help
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      Brat it is for my Hearing with the ALawJudge They say if I have letters from others of just how debilitating this disease really is that it would help so Im doing anything I can do to get my SSD.
      Be grateful when you are feeling good,and graceful when you are feeling bad


      • #4
        Hi DebraLee

        I dont know if you could or not, but I had 2 of my former coworkers write up letters for me about my condition and how it affected my job preformance. They knew first hand and even saw me falling asleep at my desk. If you have any one that you worked with that wouldnt mind I can email you what my friends wrote if you would like. I do believe that helped me alot with the judge. Good Luck and let me know. LisaK


        • #5
          Something that helped myc ase Immensely with the alj was the letter I got from the ICA, it parallels the symptoms that we face as Ic patients with those of other diseases which are classified already. It really helped. Good luck, hope it all goes well for you!


          • #6
            I think you may need to copy things from the board or the ica they have GREAT information there also look at this website. then type in Interstitial Cystitis. This site is mostly of updates on new drugs or findings with ic.
            Good Luck. wink
            Medicine taken daily or as needed:
            1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
            2. MS.Cotin 100mg 3x daily
            3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
            4. Fentanyl 100 mg Change every 48hrs.
            5. Gentamicin 80mg install after each rescue treatment
            5 Leviquin 500mg self start as needed.
            6. Klonopin 1 or 2 daily as needed.
            7. Prosed/DS as 1 every 6hrs as needed.

            I have IC, but IC doesn't have me anymore!


            • #7
              Thanks everyone Nina where do I find this letter??
              Be grateful when you are feeling good,and graceful when you are feeling bad


              • #8

                here is the link that tells about it. I think I emailed them and asked for one. It is hard to remember as this was 2 years ago almost.
                best of luck to you!