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  • Question about support group

    I wanted to know where I can find a IC support group in my area! I checked the list on the handbook ! I did not see one near me ? Is there a # you can call or a website to find information about local support groups?
    Thank you,
    Kelly
    To the world you might be one person but to one person you might be the world..
    I am a newbie Angel ~IC Angel 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.

  • #2
    Kelly i don't know where you're from but you should be able to call your uro's office and they should have this information. Jill may also know of a support group where you live if your doctor doesnt know or at least the nearest support group near you.
    sending you hugs and prayers for a pain free day.
    Rhonda
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

    Comment


    • #3
      Thanks Rhonda,
      I did ask my uro and He said he did not know of any but he would check ! I have a appointment on Friday ! I'll check with him then !
      Kelly
      To the world you might be one person but to one person you might be the world..
      I am a newbie Angel ~IC Angel 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.

      Comment


      • #4
        I called my uro's office today ! There no support groups in our area Glad I have you guys or else I would be alone !
        To the world you might be one person but to one person you might be the world..
        I am a newbie Angel ~IC Angel 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.

        Comment


        • #5
          Well..I live in the northern part of the country...problem is, all the way on the othe side fromyou . Find out if there are some folks from the NY area on this board want to meet in a mutually agreeable place for lunch or something for you to start a group. I know I get incredibly lonely. I talked to my counselor about that today. Pretty damn isolating disease.

          Good luck...Hopefully NewYork has some folks that want to meet with you.

          I can't believe it. I'm watching Batman and Robin. (The old version) (HOLY CORNEY BATMAN)

          Talk to you later.

          Tracey
          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

          Medications I CURRENTLY take:
          90 mgs Ms contin (45 mgs Am/PM)
          Percocet as needed
          Topomax 100mg day
          Ambien 10 mg bed
          desipramine 25 mgs




          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
          Albert Einstein

          Comment


          • #6
            Hi Kelly,

            There currently isn't an active support group in Memphis either... there was one, but I heard the leader was having personal trouble and had stopped doing the group. So for now, I am alone, aside from a couple wonderful ladies I've met from Memphis on these boards.

            I am actually considering either helping the old leader restart the group, or starting a completely new group myself if the old leader feels unable to continue. My husband would like to get in on the action too, and he and I think that together, we could be GREAT at leading a support group. I'm a scientist, so I LOVE doing research and keeping up with the latest scientific trends and treatments for IC, and my husband, who is a high school physics instructor, is used to speaking in front of large groups and would be great at leading meetings for SPOUSES and FAMILIES of IC patients.

            If you decide to start a group in NY, let me know and we can chat about how it is going.

            I am going to try the email address on the ICN site for the previous Memphis leader to see what her opinion is...

            Let me know...

            Jen
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.

            Comment


            • #7
              well at least we have each other.
              Medicine taken daily or as needed:
              1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
              2. MS.Cotin 100mg 3x daily
              3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
              4. Fentanyl 100 mg Change every 48hrs.
              5. Gentamicin 80mg install after each rescue treatment
              5 Leviquin 500mg self start as needed.
              6. Klonopin 1 or 2 daily as needed.
              7. Prosed/DS as 1 every 6hrs as needed.





              I have IC, but IC doesn't have me anymore!

              Comment


              • #8
                Jen,
                I am doing some research to see if a group is needed in our area! I will let you know what I find out !
                To the world you might be one person but to one person you might be the world..
                I am a newbie Angel ~IC Angel 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.

                Comment

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