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  • #1

    Social service / community / social worker support for severe IC?

    I can't seem to find the right forum for this question.

    For any who have had severe IC for a while (like those who'd be applying for social security, I'm thinking) & knows hospital emergency centres, does anyone have any experiences with social services / community support for someone with severe IC -- a bit like what occupational therapists do, or social workers maybe --- helping you adjust to having chronic illness and trying to improve your quality of life?
    ______
    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
    Tags: community support, social services, social workers
  • #2
    Some areas do have support groups for interstitial cystitis. If yours doesn't, you might check with your local hospital to see if there is a group near you with support for chronic pain patients.

    I believe there's a seminar scheduled near where I live --- I do plan to attend if at all possible.

    Donna
    Stay safe


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    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.     [3MG]

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

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    • #3
      I had twice monthly appointments for a year and a half with a medical social worker to help me adjust to the symptoms and treatments for IC, and to help me deal with lack of support by family members. It was very helpful.

      Strangely enough,t was a part of a telephonic service by my insurance company (my employer had paid for this supplemental coverage) for patients with high cholesterol. I found out about it when I called the company and told them to take me off their list because everything they were recommending for my high cholesterol was out of the question with my level of IC (tomato, soy, red wine, lots of exercise) and they told me they had a service for "complex cases". They gave me a medical social worker, exercise specialist, case manager nurse, dietician. Unfortunately, this service no longer exists - due to the economic crisis. Now all they offer is prerecorded messages on health topics, which isn't helpful to me.
      Kadi

      -------------------------------------------------------------
      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.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest
      "

      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

      Comment

      • #4
        Clarification

        Sorry I'm being unclear -- I mean one-to-one community support workers / social workers, if one is so disabled by IC & morphine somnolence to be unable to function, & bed-bound other than medical appointments.

        Specifically wondering about one-to-one social service support.

        Thanks Kadi.
        ______
        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

        Comment

        • #5
          hmmmm this is interesting, I just finished my social work degree, I should look in to this.

          Jenn
          28 yrs old,

          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



          Me in my graduation gown!

          Comment

          • #6
            if this kind of support exists sounds like a good idea
            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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