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icnjill do we have a ic offical awareness day

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  • icnjill do we have a ic offical awareness day

    i was wondering if we have and offical awareness day to inform the public about IC sometime in the year. Could you let me know. Thanks in advance.

    Love,
    Broken_Smile

  • #2
    Broken Smile,
    That would be a good idea if we didnt...If a date is set we could all get the word out...
    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:
    http://www.ic-network.com/handbook/

    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.

    Comment


    • #3
      I LOVE this idea! I dont think there is one right now either, but I really hope Jill sees this and designates one. Then, even if we all send letters to different mags, newspapers and talk shows, thru out the year, on IC Awareness day, we could ALL do it at the same time to the same people.

      Did I mention that I LOVE this idea?

      Comment


      • #4
        That's an awesome idea!
        current meds:
        cytotec 200mcg twice daily
        toprol
        allegra

        ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

        dx: hashimoto's thyroiditis 1998
        dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
        dx: endometriosis 2003
        dx: innapropriate sinus tacchicardia 2005

        meds tried but failed:
        elavil (6months)- severe tachycardia
        elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
        a bunch of others



        Me and my best friend's baby (also my Godson!)

        Comment


        • #5
          You could always PM her and share this idea
          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:
          http://www.ic-network.com/handbook/

          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.

          Comment


          • #6
            Originally posted by leelee88 View Post
            You could always PM her and share this idea
            I agree! I definately think you should PM her to tell her about your idea! Tell her we all love the idea too!

            Comment


            • #7
              That is a great idea, i love that to!!! We all need something like that for sure!

              Shirley2

              Comment


              • #8
                Oh now you got me started!


                We could have an IC awareness day, and we'd all wear our Tshirts and sweatchirts from my shop, and we can have a Five K or Ten K walk a thon!!!! We can raise money for IC Awareness and research!!!!!
                http://www.TheCraftyEwe.etsy.com

                Comment


                • #9
                  Originally posted by Moonheart View Post
                  Oh now you got me started!


                  We could have an IC awareness day, and we'd all wear our Tshirts and sweatchirts from my shop, and we can have a Five K or Ten K walk a thon!!!! We can raise money for IC Awareness and research!!!!!
                  That would be awesome! (But these days, I'd have to ride along beside you guys in one of those motorized carts like they have at Walmart...I dont think I could even walk in a 1/2 K ) But, I could load down the cart with water for all of ya and yell real loud! :woohoo:

                  It would be cool to have it in Washington D.C. (like other causes do when they have those "March on Washington" rallies. You know like the Million Moms march and the Million Man march, etc. We could march over to Congress and demand better pain care for chronic pain patients! (I am just thinking aloud here...)
                  Last edited by ihurttoo; 04-01-2007, 06:02 AM. Reason: add info

                  Comment


                  • #10
                    We're going to get it in the works. Jill and I have plans to talk about it later this week and I'm going to start designing the shirts. Even those who can't participate by walking can wear the shirts and cheer others on. We don't mind carts (I'll need one too) we can have a cart-a -thon!

                    I'll let you guys know when I have some news!
                    http://www.TheCraftyEwe.etsy.com

                    Comment


                    • #11
                      Originally posted by Moonheart View Post
                      We're going to get it in the works. Jill and I have plans to talk about it later this week and I'm going to start designing the shirts. Even those who can't participate by walking can wear the shirts and cheer others on. We don't mind carts (I'll need one too) we can have a cart-a -thon!

                      I'll let you guys know when I have some news!
                      Glad you PMed her! Let us know what you guys figure out!

                      Comment


                      • #12
                        Thats so cool Moonheart.. I know Jill will come through for us
                        Even if we can all get together in one place we could still do a walk or ride..hehe In our cties or hometown..
                        And I have already ordered my shirts
                        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:
                        http://www.ic-network.com/handbook/

                        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.

                        Comment


                        • #13
                          I have not responded to the IC awareness day!

                          Hello Everyone,
                          I have been having a bad time with some dental work will go in to the dentist to get some teeth pulled. I will get back with you all soon. Moonheart thanks for talking with Jill as I have been having a hard time lately. I just thought why not let's get the word out some how or another some progress is better than no progress. Love you all and pray for me a my dentist appointment today. Love you all!!!!

                          Love,
                          Broken_Smile

                          Comment


                          • #14
                            Originally posted by broken_smile View Post
                            Hello Everyone,
                            I have been having a bad time with some dental work will go in to the dentist to get some teeth pulled. I will get back with you all soon. Moonheart thanks for talking with Jill as I have been having a hard time lately. I just thought why not let's get the word out some how or another some progress is better than no progress. Love you all and pray for me a my dentist appointment today. Love you all!!!!

                            Love,
                            Broken_Smile
                            Sorry your teeth have been bothering you. Lord knows we have enough time just having IC, without other things going wrong too. I hope that you feel better after they pull the offending ones. Take care of yourself and hope they give you some decent pain meds that will cover all your tooth pain and bladder pain too! Big hugs, Amy

                            Comment


                            • #15
                              Oh you are so welcome! I'm very excited and will let you guys know what is going on when we have news. I'm in the middle of a move, so I have to try to find time for everything. It will get done though! Never fear!
                              http://www.TheCraftyEwe.etsy.com

                              Comment

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