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  • Hanging In There

    Hi everyone! I'm Jenny and I was diagnosed with IC in the beginning of January. I've recently found this website, and boy am I glad I did! I am currently on no meds - and struggling with it daily. My husband and I are trying to have another baby (we have a 3 year old daughter), and I don't want my IC to hinder our ability to expand our family. Therefore, my doctor and I have decided that I should try to deal with my symptoms with diet and breathing exercises. The past three months have been going alright. The hardest parts of the restrictive diet for me is the chocolate and soda. Even just a few sips of a coke will send me into a pretty bad flare-up. Every day I feel the pain and pressure constantly, but despite that I try to keep a positive attitude about everything.

    My co-workers and my family don't really understand what I'm going through though. No one I know has ever heard of this chronic disease, and so no one I know is taking it seriously. I feel like I can never talk about my constant pain or any of my other symptoms, because no one I talk to understands what I'm going through. It's an invisible disease and I feel very alone most days. This is why I'm so glad I found this website, and I hope I am able to get some good advice from some of you! Thanks!!
    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)

  • #2
    Welcome Jenny! Yes, it is hard to stay away from the chocolate and soda. I am glad that you found us. There are a few people in here that are expecting and so hopefully they will be able to give you some great advice. It is sometimes hard for family and friends to understand, but direct them to this website and there are some books available to help answer questions as well.

    Good luck to you!

    Tracey

    Comment


    • #3
      to the ICN, Jenny. I am very happy that you found us.

      Sadly, it is very normal that no one has ever heard of IC. I hadn't heard about it before being told that I have it. There is ongoing PR about it from our members. One day, IC will be common knowledge. Until then, we have to continue to educate those around us. You can print up some things from this site that help explain what it is and give it to the members of your family and anyone else you might like to give it to. You can also go to Wikipedia and look at what is there about IC. It is a very good entry.

      I explain IC this way to those who ask: There are sores on the lining of my bladder which causes my urine to be my worst enemy. It is like I have poured acid into my bladder.

      I also what to wish you success in the baby department. I hope you post here very soon that there is another baby on the way.
      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


      • #4
        Hi!

        Thanks for the response Tracey! I've tried to get my mom and my husband to read up on IC and to visit some of the websites, but they don't take it seriously. I've always had problems with my bladder, I had my first UTI when I was 6 months old, so my mom seems to think it's the same sort of thing. I'm not sure what to do to make my family, and my co-workers, understand that I am in constant pain - and it is a real disease. It's so frustrating because I feel like their lack of concern and compassion means they just do not care. I know that's not true, but when I'm having a flare-up it definitely feels that way. Did you have to go through that too when you first got diagnosed?
        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

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