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Wednesday, November, 25, 2009
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How do you find local groups?

Nan

Nan

Wednesday, September 16, 2009
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I was reading a share post today and I, like others would like to help others with RA or any disability. I can't do alot but I would like to give back. I am lucky enough to have a great husband and kids who help out when I am hurting but there are so many out there who have no one or no one who will ...
  1. Untitled Comment
    c21tamit
    Friday, September 18, 2009 at 01:37 PM

    Wow, I don't know what to say. I too wish that there were more support groups. We isolate so much with cronic disesases, afraid that someone will treat us differently. RA at least(unfortunately) has visible effects. The general public knows enough about it to not be afraid of "catching something". Many of us with other conditions, OA, Fibro, MS, suffer in a different world. Our issues are not visible. Some see us as looking for an excuse to lazyness. That hopefully will change as more of these conditions get their time on TV commercials.

     

    Kudos to your husband. He is a hero. He went above & beyond the call of duty, but sometimes just a few kind words or a moment in time make all the difference.


    As for that poor woman, I'm not sure that there was extenuating(sp) circumstances,( Flu, Night job, ect) but the boyfreind has got to go. She will need a lot of supportive people around her. If an emergency crew couldn't get him out of the house, then he won't give her the support that she will need.

    Reply
  2. an idea or two ...
    Ellen
    Saturday, September 19, 2009 at 11:04 PM

    I won't judge the boyfriend - maybe he's wearing earplugs when he sleeps, takes medication, or is on a ventilator - it's not our business... (or maybe passed out drunk...)

       But - concerning support groups - I have had the same desire/question.  I contacted the Arthritis Foundation after looking up the nearest chapter in my state, at http://www.arthritis.org

       It turns out that it's not easy to get a turn-out anywhere - problems of transportation, getting a critical mass, people not wanting to drive at night, etc.  Or - everyone has another meeting.  However, they did send me a 'leaders manual' and suggest I look for a place to hold a meeting (accessibility to the handicapped is obviously a plus).  Sometimes it's hard to find a place that will be free (churches will often help, for a donation).  I called our local hospital, knowing that they have meeting rooms where some support groups meet.  They seemed to think, or assume, that they also needed to provide a facilitator, which was not what I asked, and said they would check around and get back to me.  Needless to say, they never did. (We're a small town, but ... like I said, everyone is already volunteering for the max, just to cover alal the bases!)  And I also talked to friends, and other people I'd meet, in doctor's offices, at work, when medical topics came up, or sharing with friends.  But again - it's extremely difficult. I figured I could not do it all on my own, there needed to be at least one other leader, in case one of us just was not up to leading on any particular night of a meeting.  So - I consider my self a portable support group member.  I do not make a secret of my illness.  and it's amazing what conversations come up, sometimes just due to the wrist brace I am wearing ( "Is that carpal tunnel?"   "No, I have rheumatoid arthritis ....")  That little exchange led to a 20 minute conversation with the proprietor of a high-end fabric store in a tiny hamlet 15 miles from home.  The woman had been mis-diagnosed 10 years before with asthma and some other respiratory illness & allergies, and was only now getting tested for RA.  She was very afraid, had just been tested, and was waiting for the results.  I told her about my experience, and those of others I knew.  I took down her name and phone number and checked back with her about 2 weeks later.  It turned out she didn't have RA, but it was a very worthwhile interaction for both of us.  You just never know who had a parent, child, friend or neighbor with some kind of chronic illness.  There is always something to learn, and to share.  And approaching it in this way, means you don't have to schedule yet another fixed commitment, you will find yourself developing a sixth sense about when to talk, and when to listen.  This, at least, is my experience. 

         I found the folks at the Arthritis Foundation very friendly and helpful.  They also have a good website, and chat groups.  And you can participate (as on this site) in the privacy and convenience of your home, whenever you choose.  I also got a DVD to learn Tai Chi for Arthritis from them, with a lower mailing cost than if I had ordered it  directly from the Tai Chi website.

         So - Just put out your antenna, keep your eyes and ears open, there are people you may even already know, who would appreciate help, sharing, friendship...when they learn that they can safely open up to you, because you understand.

    Reply
  3. Untitled Comment
    Lene Andersen
    Monday, September 21, 2009 at 12:26 PM

    Check out Arthritis Introspective - they have support groups in many areas and tips on how to start one of your own.

    Reply
  4. sharing & giving back!
    Kathleen
    Thursday, October 15, 2009 at 01:04 PM

    I too, have RA and Fibro.  Diagnosed 2 years ago-live in IND area of state of IN-looking for local support groups too!  Keep up the good work-you're an angel!  Love-Kathleen 

    Reply
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