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icnjill do we have a ic offical awareness day

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  • #16
    IC awareness day is a great idea!
    Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
    UTIs since mid 2004
    Recurrent yeast infections since mid 2005
    IC dx 3/2006
    V V dx 12/2006
    Other conditions: IBS, allergies, dry eyes.


    Current IC medications:
    Elavil (since 12/06) 10 mg;
    Cysta Q (since 5/07)
    Rephresh acid jel every 3 days
    D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
    Probiotics Femdophilus or other brands
    Gy-Na-Tren for yeast infections (started using it as needed since 2010)
    Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


    Past Meds and why I stopped them:
    Elmiron: March to September 2006: headaches
    Lyrica:2 weeks in 2006: headaches
    Cystoprotek: from Jan to April 2007: nausea

    Femcon Fe (2/07 to 10/07):caused spotting/bleeding
    BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


    "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

    Comment


    • #17
      I love this idea! I started a support group in my area and the 1st month only 2 people came. The next month no one! I have had announcements placed in the newspaper and local TV, but not a good response. I have always felt that people need to be aware of this disease so they can be properly diagnosed. That is really my biggest concern that there are people just like me that went for 5 years thinking I was going crazy before finally someone was able to tell me I had IC.

      I think I will make up some flyers about the support group and describe the symtoms on it and go around to different dr offices and public places and display them. Maybe that will help.

      Please keep me informed on any awareness day!! I am so excited.

      Robin
      The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



      Meds:
      IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
      UC: Asacol

      Comment


      • #18
        Hi Everyone I have been in pain!!!

        Hi Everyone,
        I have been having bladder flareups and today on top of that I had to get six teeth pulled on top. I am having to get dentures. My nightmare of bad teeth that started happening with the Ditropan I used for several years but no longer do. The medications made my teeth extremely brittle and that just started breaking off go get it fixed and it would break off above where the work was done. Well enough about that.

        Moonheart,
        I am so glad you have had the inspiration to pick this up and get up with Jill. I am sorry I dropped the ball time I mentioned but that is how it is for IC patients up one day and down the next. I really appreciate you picking up the ball and get it rolling again. It is people like you that keeps me coming back to the forum. Please keep us all informed on howing it is going. Good Luck on your move and don't over do it. If anyone offers to help let them so you don't wind up in a flare. Take care of yourself and again thank you so very much.

        Love,
        Broken_Smile

        Comment


        • #19
          IC Awareness Day

          I would love for there to be an IC Awareness Day! I have been dealing with IC since 1998 and to this day I have not met another person with the disease. I would be thrilled to participate. There is not a support group in my town so please keep me posted as I want to do what I can to make people aware.:woohoo:

          Comment


          • #20
            Can't ya just see it..........millions of people with IC....marching to the capitol........AND all those porta potties along the route? LOL LOL We could decorate them....like Art Cars......and Art Cows........Art Potties!!!!!! :woohoo:
            All kidding aside....count me in! Roxie

            Double Spinal Cord Stimulator surgery 8/09
            Unsuccessful MiniArc sling surgery 12/07
            Dx'd Hypothyroid
            Dx'd Chronic Axonal Neuropathy & Myopathy
            June 2007
            Dx'd IC May 2006 (after suffering for 25+ yrs!)
            First Cysto 1979
            First Hydro 1981 (Many treatments since then!)
            Collagin"Durasphere" injections for urethra
            Gall bladder surgery Aug. 2004
            Gastric Bypass Dec. 2004
            Dx'd: Barrett's Esphogus July 2004
            Dx'd: Vaginal Atrophy 2005
            Bladder surgery 2000
            Dx'd: IBS 2000
            Hysterectomy (fibroids) 1999
            Laminectomy 1989
            Dx'd: Degerative Disk Disorder 1989

            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

            Comment


            • #21
              Originally posted by broken_smile View Post
              Moonheart,
              I am so glad you have had the inspiration to pick this up and get up with Jill. I am sorry I dropped the ball time I mentioned but that is how it is for IC patients up one day and down the next. I really appreciate you picking up the ball and get it rolling again. It is people like you that keeps me coming back to the forum. Please keep us all informed on howing it is going. Good Luck on your move and don't over do it. If anyone offers to help let them so you don't wind up in a flare. Take care of yourself and again thank you so very much.

              Love,
              Broken_Smile
              You did NOT drop the ball! When one of us has to sit and rest during the battle, the next one picks up the sword and carries on till they can't anymore. That's what sisters (and brothers) are for.

              I am so excited to be doing this together with my sisters and brothers. I've decided to take this on as a full time occupation (aside from my home and kids of course). This is something that will benefit not only we who suffer today, but also those who come after us. With our efforts, God-willing, fewer will follow us. As a sign of my dedication to this effort, I have decided that in addition to the 10% of the profits I am donating to The ICN and Jill's work, I will also be dedicating 10% more of the profits from my store to the work of IC Awareness to support the effort financially. When you think about it, nothing happens for free, and no work like this is accomplished for free. So it will need funding. The more you all support the store, the more money will be available to provide for IC Awareness. I am currently working on ideas for graphics for the products in the store. If any of you have ideas, please contact me and I will look into compensation for any approved graphics that I purchase the rights to from you.

              Every time I read someone's story on here it devastates me that someone else is suffering the way I do. Then for every one that posts on here, I think of how many don't know what they have and don't have any support in their suffering. ONE EVERY FIFTEEN SECONDS!!! A new case of IC every fifteen seconds! That is WAY too many. (I think I just came up with a new design for the store, lol).

              Anyway, that's where I'm at right now. Jill and I are going to get together towards the end of the week. We WILL make this happen! :woohoo:

              to all of you who keep going every day, even when you don't want to.
              http://www.TheCraftyEwe.etsy.com

              Comment


              • #22
                Roxie! I love it!

                What do you think of calling it the Million Potty March?

                I could design a shirt with a Porta Potty on it. :woohoo:
                http://www.TheCraftyEwe.etsy.com

                Comment


                • #23
                  Moonheart ,
                  I dont know if you seen my other post... But I loved the shirts and will be ordering more.. Thanks again..
                  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


                  • #24
                    Moonheart

                    Didn't realize there was an IC store w/clothes, etc until your post. (I learn something new every day on the message boards) Anyway, I went to it and had some questions. What is the meaning behind the emblem on the clothes?

                    Robin
                    The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



                    Meds:
                    IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
                    UC: Asacol

                    Comment


                    • #25
                      yay!!

                      Well we absolutely must now!!! Count me in! Just let me know the date and what I can do to help! I will be on it!! And loving it!! Maybe one day, everyone will actually know what I.C. is!!
                      Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                      Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                      Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                      Comment


                      • #26
                        I love the idea of Million Potty March! LOL sadly....it would be true! We'd need lots of potty's with lot of IC'ers!
                        Will you be coming out with short sleeve t-shirts with the IC emblem on it? We live in Texas and it's hot down here already. Thanks! Roxie

                        Double Spinal Cord Stimulator surgery 8/09
                        Unsuccessful MiniArc sling surgery 12/07
                        Dx'd Hypothyroid
                        Dx'd Chronic Axonal Neuropathy & Myopathy
                        June 2007
                        Dx'd IC May 2006 (after suffering for 25+ yrs!)
                        First Cysto 1979
                        First Hydro 1981 (Many treatments since then!)
                        Collagin"Durasphere" injections for urethra
                        Gall bladder surgery Aug. 2004
                        Gastric Bypass Dec. 2004
                        Dx'd: Barrett's Esphogus July 2004
                        Dx'd: Vaginal Atrophy 2005
                        Bladder surgery 2000
                        Dx'd: IBS 2000
                        Hysterectomy (fibroids) 1999
                        Laminectomy 1989
                        Dx'd: Degerative Disk Disorder 1989

                        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                        Comment


                        • #27
                          WOW! Thanks Ronda!!! I'm so happy!!!

                          Robin, I'll see if I can give you a proper response in another thread alright? Devoted just to your question.

                          Roxie, Hi! There are short sleeved shirts available in the store already, as well as two different styles of ribbon. One is a plain ribbon and the other is made up of turquoise rhinestones. Very pretty!

                          It's kind of hard to navigate the store because it put some of my things in a section called "new section" that you have to click on to see the rest of the things. It's in the left, top corner, and if you click on the link you can see the rest of the store. Oh, and it's fairly new, so it's not unusual for you to not have seen it yet.

                          I'm going to be putting more designs in the store and will try to get it organized better. I'll see what I can get accomplished today alright?


                          Hugs to you all and thank you for supporting IC research and awareness!!!
                          http://www.TheCraftyEwe.etsy.com

                          Comment


                          • #28
                            http://www.cafepress.com/the_ic_team/2754722

                            Here is the link to the new section, directly. Until I get it fixed.
                            http://www.TheCraftyEwe.etsy.com

                            Comment


                            • #29
                              HI guys!

                              I have an excellent idea for a design for my store. I really need someone to help me out with designing the graphic for it. I probably can do it if I have to, but I was hoping to get it a little more professional looking.

                              Do any of you do this kind of artwork? I want it to look professional, yet with a slight comedic feel to it. Please PM me if you think you could help. I would need it scanned or uploaded into the computer and emailed to me or transferred via ftp. It will have to be done in PNG. If you know what that is then you are definitely the right person for the job.

                              Thanks everyone!
                              http://www.TheCraftyEwe.etsy.com

                              Comment

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