No announcement yet.

I have no idea where I should post this...

  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    I think the websites just followed the leader.. I was emailing someone who had a store who has some neat things but told her since she did not reconize the color teal or turquiose for IC then I was not going to order from her.. She immediately contacted someone from the ICN< maybe Jill dont know but she change her IC color.. So of course I ordered some things because she responded so quick with the change.. If people want to help me get the color changed to the right color do as I did email those web sites and set the record straight

    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:

    Diet Reference Sheet:

    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.


    • #17
      I would guess that somewhere along the line the word got out that the ribbon was Navy Blue because it seems to on a lot of web sites. Not saying that the word that got out was the "correct" word, but it seems that turquoise isn't mentioned anywhere that I can find. It just seems all confusing.


      • #18
        Oooh!!! This website has turquiose listed. I found this after I decided I had to check out all these websites and do a little research.
        IC Awareness


        • #19
          I saw that website before when I was looking for ribbons. I like some of that jewlery. What I would really like to find is a ribbon charm that I could put on my charm bracelet that I already have. I have no idea where or how to find one though.

          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus