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  • Anonymous
    Participant
    Post count: 93172

    Hi, Valerie! Be assured that you are not alone. The listing of
    Graves’ Disease support groups is at http://www.ngdf.org/groups.htm
    Unfortunately, Montana is among the states that currently do not
    have a support group. Nancy, our NGDF director, would love to add
    one more to the list. Here’s how:

    Get in touch with Nancy at ngdf@citcom.net. She will mail you the
    initial information. There should be little or no cost to start a
    support group. What it “costs” is TIME. You will need a doctor
    to act as “resource physician”, and the doctor can most likely help
    you get a place to meet at the hospital. You also need another
    person to help you. Check it out. I’ve heard that being a support
    group facilitator is more rewarding than attending the group meetings.

    Wishing you health and happiness, Debby

    Anonymous
    Participant
    Post count: 93172

    If you are interested in starting a group in your area, you can also get myriads of information and tons of help from the NGDF (National Graves Disease Foundation). that’s what THEY are there for.

    Mitakuye Oyasin
    Val

    Anonymous
    Participant
    Post count: 93172

    Valerie, I contacted that particular org. yesterday and was referred
    to another org. where I got a recording and no help.

    Anonymous
    Participant
    Post count: 93172

    My lovely wife Jan answered the question very well. Finding a doctor to
    help was the easy part. The hospital was very helpful too as Jan stated.
    The hard part was making a commitment by us to carry through with this.
    Yes we get more work to do than the average support group becase we also
    run the BB and the Wed night Chats. If you can find a co-leader it really
    helps to keep you from getting burned out.

    I have talked to many of the support group leaders over the years and we
    do not require warm fuzzies to keep doing what we do. It is nice to know
    once in awhile that we make a difference. I will be honest with you all there
    have been days that I did not want to deal with the BB or mail because I was
    having problems of my own. But I always read the BB and try to answer my mail.
    I remember when I was going through BAD eye problems and had no one to talk
    to because this BB did not exist and I did not know the NGDF existed. I put
    my family through hell. I used to be able to go from zero to a@@hole in about
    half a second. Not any more!!

    We go to our support group meeting every month for only one or for thirty. As
    long as one needs help we will be there. I know I needed it before and there
    was no one but my family and I took things out on them. They have been very
    supportive and when you start a support group invite the families so they know
    what is going on too.

    As for bulletins, you will receive the full set (free) and I make copies for
    my folks that request them (no charge for bulletins in my group) so they can
    leave the meeting feeling better than when they got there (I hope).

    What do we get out of it? A sense on oneness with each other since we all know
    we are in the same boat. Nancy said we would like to see zero suicides due to
    Graves disease. My cousin killed himself at age 23 because he had Graves disease.
    I spent hours on the phone with him when he was diagnosed to help him out. In
    Tiger’s case he was raised that asking for help was unmannly and to walk it off
    so to speak. If there had been someone local to talk to things may have been
    different. Tiger knew what I went through and he had no one else to compare
    his disease to. A support group lets you see others in the same boat and you
    begin to understand Graves disease is not a death sentance. It just makes us
    try a little harder to get through the day.

    Start a group where you live. The commitement is the hard part. The rest
    falls into place once you have mad the choice.

    Love to all,

    Jake

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