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  • #1

    Just diagnosed

    and man is it scary???
    My name is Jennifer. I'm 29, happily married, and have 2 wonderful children. My son is 7 1/2 and my daughter is 2.
    When I have episodes it is really hard to keep up with them and all of the other things that have to get done. DH is very understanding and supportive.
    I'm currently talkin 300 mg. of Elmiron a day. I'm trying to change my diet but that is so tough. I am looking forward to getting to know all of you.
    I'm sorry that anyone has to deal with this.
    Tags: None
  • #2
    Changing your diet is hard. I know that I have to make two meals sometimes so that my husband can have things he likes that I cant eat. Sorry that you have to go through all of this.
    Interstitial Cystitis Stomach problems
    diastolic dysfunction
    vascular insufficency of left leg
    pelvid floor disorder
    hypothroidisim
    asthma
    bread cancer - 5yrsl. remission
    swollowing difficulty
    fatigue
    lots of doctors
    lots of med.














    Keep your eyes on the Lord and he will direct your paths.

    Comment

    • #3
      Hello..
      I know its frustrating to having to learn what you can and cant eat.. What I did was I started out not eating any of the bad foods, like tomatoes,citris,vinegar, and caffiene, and no sodas.. Sounds like the end of the world, but its not.. You get use to it after a while.. I also take prelief when I eat something I am not forsure about..

      Good luck and if you need anything just ask....
      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

      • #4
        I wish you didn't have to come here, but since you have, nice to meet you!
        The thing to remember about the diet, is that it encompasses two very wide extremes - there are people who will find over time that they can eat pretty much anything, and there are people who will find they have to be very strict. Chances are, you will fall somewhere well in between those points. You just won't be able to know exactly where until you try the diet. You'll have to be strict at first, which I know, is an adjustment, but once you get to a comfortable "baseline" level, then you can begin to experiment and add things back in. You will probably have to give some things up for good, but you will also probably not have to completely abstain from everything on the list. Everyone is different in how they react to certain things.

        Comment

        • #5
          Welcome

          Hi Jennifer! I'm Jennifer too, and I have a 3 year old daughter .. I am also new to this community and this disease. I was diagnosed in January and am struggling with the diet restrictions as well. So good luck with it! If you ever want to talk, I'm here for you!
          I am Jenny.
          "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

          Dx:
          -UTI's and Kidney infections: Since 6 months of age
          -HPV: November 2005
          -Advance high-grade pre-cancer cells found in cervix: January 2006
          -LEEP procedure: January 2006
          -IC: January 2007

          Medications (Began Treatment 3/27/07):
          -Elmiron 100mg 3 x per day
          -Elavil 25 mg
          -Hydroxyzine HCL 10mg
          -Sanctura 20 mg 2 X per day (added 07/24/07)

          Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
          -20cc Lidocaine 2% Plain
          -2cc Sodium Bicarbonate 8.4%
          -1cc Heparin (10,000 units/cc)

          Comment

          • #6
            Hello Jennifer and to the ICN.

            Yes, in the beginning IC is very scary. Learn all you can about it and it will become less foreign. The more you know, the better you are prepared to deal with what comes along. You have found a great place to begin. Take a look at our Patient Handbook. The link can be found at the top of this page.

            Sharon

            Shopping??? Did someone mention shopping? I'll get my hat... ;-)

            Where I can be found most days.



            Link to the ICN Patient Handbook:
            http://www.ic-network.com/handbook/

            Link to the IC Diet:
            http://www.ic-network.com/diet/


            IC 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

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