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Netherlands, IC, & a medical psychologist

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  • Netherlands, IC, & a medical psychologist

    I know that ICN stresses the positives, stresses hope - but sometimes I find it helpful to hear the dark places others can get to because of the disease... sometimes it feels validating, to hear both that and others having similar IC experiences.
    This video is linked from IC Patients Assoc. of the Netherlands.
    It has subtitles but is fairly short and worth viewing.
    Song at the end is helpful too, though Dutch it is translated in text!
    http://www.youtube.com/v/aD6POPg4xyk...mp;hl=nl_NL%22
    ______
    Severe IC developed fairly quickly, autumn 2010.
    So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

    - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
    - Methadone 9 ml/day
    - Instillations:
    - 40ml Kenalog (steroid for inflammation) 2 x per
    week, along with rescue cocktail of heparin,
    lidocaine, sodium bicarbonate
    - 20ml Uracyst, monthly @ $100/per
    - Depo lupron injections for endometriosis, monthly @ $88/per

  • #2
    i feel so sad for this woman because i know what shes going through.thanks for posting this video.
    Newly IC diagnosed as of February 2011.

    Medications I'm on that seem to work:
    Zoloft- one once a day
    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

    Failed Meds:
    Elmiron-after 4 months,digestive side effects got to be too much
    tramadol-allergic
    DMSO treatments(5-6)
    probiotics

    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
    AROMATHERAPY-candles,incense
    Village Naturals Aches and Pains Peppermint Bath Salts
    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

    ACUPUNCTURE/HERBS
    Significant pain relief so far.

    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

    Add me on facebook Angela Hasic

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Lord, make me an instrument of your peace;
    where there is hatred, let me sow love;
    when there is injury, pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.
    Grant that I may not so much seek
    to be consoled as to console;
    to be understood, as to understand,
    to be loved as to love;
    for it is in giving that we receive,
    it is in pardoning that we are pardoned,
    and it is in dying [to ourselves] that we are born to eternal life.

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    • #3
      i too at one time was told it was more in my head, by my own soon to be ex husband. i know to well the pain that people do not understand how painful ic can be. as well as the life altering change we have to go through. i pray that they will find a cure soon in the meantime We Have Each Other.
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