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I Don't Know What To Do With My Hands!

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  • I Don't Know What To Do With My Hands!

    I was pretty recently diagnosed with IC.

    I am in my mid-twenties, and when I was diagnosed two months ago, I was mildly outraged. I thought, I am way too young, too athletic, too fun to have this. Before the onset of my symptoms 6 months ago, I went out all the time, was an avid runner, was super social and involved, and was generally living up my early twenties.

    Suddenly, the prettiest years of my life would be spent in pain and suffering. I had a really rough five months of figuring things out and stabilizing, but I came to the realization that I refuse to waste my twenties.

    I decided to start a blog to both chronicle my experience with IC, and help me process everything. It isn't totally about IC--because I refuse to be defined by just my medical condition--and also details my misadventures with training for a half marathon, and eating healthy and clean. I am still new to all of this, and am still figuring out medications/treatments/lifestyle choices that work.

    So far it is really fun, and I thought I would share with this group--since you are my fellow young people. I'm hoping to possibly spread some positive vibes and inspiration, and would also love feedback from other people.

    Please check it out:

    My first post: I Don't Know What To Do With My Hands

    P.S. If you don't feel like reading it, but still want to reach out, please do!

    Read my blog, Fancy Sweatpants, chronicling my misadventures with IC, nutrition, and fitness.

  • #2
    Re: I Don't Know What To Do With My Hands!

    Awesome! I liked reading your blog. I was diagnosed at 29..Im now 30 soon to be 31. Glad you have a positive outlook on life. It can be hard sometimes.

    Goodluck to you,

    Health Issues
    IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
    Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
    I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

    Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

    WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
    Follow me on my IC Journey:


    • #3
      Re: I Don't Know What To Do With My Hands!

      With your attitude and determination, you will make it. Thank you for sharing.

      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help:


      Diet list:

      AUA Guidelines:

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Re: I Don't Know What To Do With My Hands!

        Hi Kayla,
        I'm in my 20s too. Recently diagnosed as well. It can be very saddening but I'm trying to be patient and let the medications have a chance to work. Good luck with your treatments.