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enjoyed it while it lasted!!!

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  • enjoyed it while it lasted!!!

    Hi all, long time no hear from me, so sorry, I just needed a break from everything for awhile. But I did have a 3 month 'remission", I was not needing any opiates and was having to pee only about every 2 hours at times, so that was great, first remission in 8 years!!!
    I do really watch my diet, I know what my "triggers" are and of course they were (are) some of my fav foods and drinks, but once you get used to having certain foods not in your diet, it is fine.
    It was the first time in 8 years that I havent been on a pain med (except Zanaflex, due to back surgery) so that was wonderful!!!!
    It wasn't a total remission, I kept the pelvic pain part, but the urinary symptoms were much better, so I wasn't so dagummed tired and I think that helped me not to need pain meds.
    What I am trying to figure is why this happened and why it is going back to my normal IC self, but I suppose all of us would love to know the why's and hows. I didnt change anything...............
    But I was able to go to my sons High School graduation and even have a big party for him during this good time, so the timing was good.
    I honestly never believed I would have any sort of remission since I have had a severe, no treatments worked case of IC for 8 years, but I did, so DON'T give up Hope, that is all we have and it can sustain us.
    Love to all and Hi to all my old friends and also to the ones I hope to meet.
    Hangin in
    Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
    Support American Cancer Society Relay for Life
    Living life on hope and a prayer.
    To read me and my family's story
    Spinal surgery 04/06
    Interstim implanted12/04
    interstim removal 12/05
    Hysterectomy 1998
    Bladder surgeries due to hysterectomy,'98,99,00,01
    DXx with IC w/ Hunners 1999
    Chronic Pelvic pain
    Chronic fatigue
    Depression/post traumatic stress syndrome
    Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

    Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
    Weekly or as needed instills w/ elmiron/lidocaine/bicarb

    Meds:various pain meds,Soma (muscle relaxant)
    and a few others I'm sure,depending on how good I have been on my IC diet.

    Trying to keep a positive attitude, in a negative world.

    Best treatment of all, Good Friends who Understand

  • #2
    Hi Sonja
    That's wonderful news that your symptoms gave you a break for a while Hoping there are more remissions in your future! Nice to see you back, though


    • #3
      Sonja it is good to hear from you and I am glad that you did have some relief even though it was temporary. That would be great to figure it out why this can come and go. I think that is what keeps us hoping because of those days. Without days like that I don't know how we could continue surviving this crazy thing but hope is what keeps us going.

      I hope you have more of those remission TIMES.

      Take care, Trishann


      • #4
        Sonja...It's good to hear from you but I am very sorry that your symptoms are on the rise.

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

        Where I can be found most days.

        Link to the ICN Patient Handbook:

        Link to the IC 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.


        • #5
          Hi Sonja,

          We ALL come back after awhile .......I hope you get back to where you were - I always TRY to keep a positive attitude, though it is HARD.....if you got into remission once, you can do it again!

          IC diagnosis 1999
          Meds: Elmiron
          hydroxyzine hcl
          DMSO as needed
          valium as needed
          librax 3x day

          TENS therapy

          Thanks to all on the boards - YOU have helped more than I can say!

          A person's true wealth is the good he or she does in the world.