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my funny story and some coping

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  • my funny story and some coping

    Hi All-----

    SO I super flaired 2 weeks ago, the lay in bed with heat, ice and drugs for 2 days, taking days to feel like yourself when you know it isn't over..the following week.....I had to fly (flairing) x 2 to a conference for work ON PAIN MANAGMENT! The only good thing as I had to duck out twice is when I said "flair plan" to my coworkers, they actually got it! Bad thing, trying to implement a flair plane on the plane on the way home. I decided against cathing (esp in a grubby airplane) so homemade ice packs in my crotch....that melted.....had to toss the undies and all.

    I made it home. Wed, flaired but laughing at the absurdity of it all.

    Hope that makes someone feel a little less alone (and vagina ice to my urethra is my savior for urethra spasms and heat for my belly)
    I am blessed to have an Indiana Pouch now
    IC since childhood, finally diagnosed at 31 yo
    PFD/Pelvic Pain,SI joint and LBP
    Low Back Pain s/p spinal fusion at 19 with more nastiness in back
    Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
    Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
    Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
    Hysterectomy 2/3/12 w one ovary removed
    Dry Eyes
    L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
    Still have issues, still take meds.

    I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
    Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

  • #2
    Good story Mel, and it's great that your co-workers "got it." You gotta keep laughing, crying gets you NOWHERE. Thanks for that, Bob appreciated it, he's always making those twisted tongue verbal errors, I chuckle, but everyone else looks at him like he belongs in the bin. Jill, wife of Bob


    • #3
      My funny story and some coping

      Great story, Mel and a good reminder to keep smiling!
      Thanks for the laugh!


      • #4
        awww that sounds just like me. I was recently diagnosed in January this year. Some days I think I am losing my mind with all of the meds I am on. My doctor knows nothing about IC and I can't afford to keep going to my urologist. Some days seem hopeless, but I just keep trying different stuff. I can live with the pain, if I could just get some relief from constantly peeing. Any suggestions?