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  • #1

    IC Petition to Congress!

    I found this website online today about a petition to congress about funding for research for IC. I do not know if many of you already know about it or signed it but there is only 2030 signatures so far. With so many of us suffering there should be many more signatures on it. Please pass this petition on to family and friends and sign it(add your name to the list) if you have not already! We IC sufferers need all the help we can get! Here is the link to the petitionlink removed)

    (FOLKS- THIS IS A VERY OLD PETITION... PROBABLY MORE THAN 7 YEARS OLD AND COMPLETELY USELESS. DO NOT WASTE YOUR TIME WITH THIS SURVEY - JILL)
    Last edited by icnmgrjill; 02-27-2007, 11:01 AM.
    Tags: None
  • #2
    I suggest you not share personal information on that site until we have had an opportunity to check it out.

    Okay?

    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

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    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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    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
      If you check it out, and it's a legit thing, please let us know, Donna. I am always happy to do what I can to support IC research/funding.

      Comment

      • #4
        IC Petition

        You are right about checking it out first! I hope it is a legit thing! I would never share my personal information anyway just a name. If it is for real that is great because we need something like this! How do we find out if this is for real?

        Comment

        • #5
          I looked at the page, and you have the option to keep your email address private. All that is shown on the petition online is your name, no address, no phone number, etc. You choose whether or not to keep your email address off the internet, but it will show up on the petition because there has to be some way to verify the signatures. It looks ok to me. I went ahead and signed it. Just know you CAN put a different name down if you don't feel comfortable using your own.
          *IC-- Summer 2004; PFD--October 2005
          *Fibro--Fall 2000; CFS-- Fall 2000
          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

          Total Abdominal Hysterectomy--adenomyosis--9\08

          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

          Comment

          • #6
            They have one of these for lyme disease too. You dont have to put in your personal info at all. and if you do you can mark in private.

            I just put my first name and state.


            Lyme disease diagnosed 11/05
            vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
            IC diagnosed with hydro/cysto- may 17, 2006

            Over growth of lactobicilli found 8/07 treating with doxy.

            Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

            8/22/07- was able to get my first speculum exam, with pap

            Strep D found in bladder with United medical labs May 2006
            2 strains of strep in stool culture 9/06
            high Strep ASO titre found 10/06

            NEW MED

            Capsasin cream-once a day for 20min,
            BUt wont lie it does burn

            About to start valium supositories for PFD

            Trigger point injections- oct 07

            Current meds:
            Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
            Zanaflex 2mg
            IC and low oxalate diet, no sugar diet
            Xanax for appointments to help relax me since they cause so much pain

            Started PT 3/07, PT has really helped me in ways I never knew that it would

            Meds ive tried
            Lyrica
            Klonopin
            Singulair
            Claritin
            Pyridium
            Soma- can barely tolerate half a pill
            Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
            Estradiol cream
            Urelle- caused worse bladder spasm and retention

            Various antibiotics for lyme which caused yeast and made the IC and VV worse

            waiting for the next chronic illness to pop up


            "Did you know?
            Every 15 seconds,
            a person is
            diagnosed with
            interstitial cystitis."
            Source: J. Dimitrakov, MD

            Comment

            • #7
              Foks... this is an old, outdated petition (7 years or so) that links to sites that no longer exist. It is completely USELESS! Please don't promote it.

              Jill
              Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

              Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

              Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






              Comment

              • #8
                Thanks Jill...after reading your post I went back and started clicking on links and found this

                http://www.petitiononline.com/cgi-bi...rilshowers.org
                *IC-- Summer 2004; PFD--October 2005
                *Fibro--Fall 2000; CFS-- Fall 2000
                *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                Total Abdominal Hysterectomy--adenomyosis--9\08

                04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                Comment

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