Wednesday, July 27, 2011

My RA Family

For 2 years I have been searching for a support group in the area for Rheumatoid Arthritis. I searched Google, I called my Arthritis Foundation contact at our local chapter, and I've networked at several hospitals and doctors offices. I came up with nothing. The woman from the Arthritis Foundation told me I could just go to board meetings because most every one there has RA so that might make me feel better. Yeah she was for real. Finally I gave up.

I have been using Facebook as a tool to keep connected with friends. Having this disease you feel very isolated. You feel no one understands. You feel bad you can't see loved ones and friends like you used to because you are just to dang tired and sore. Not knowing day to day how you feel doesn't help in solidifying plans either. Most of the time you end up rescheduling. With one click of the mouse I can keep up with everyone and I love it.

I never got into the games or allowed applications or groups access to my information. I was a little paranoid having a young daughter. I wanted only the friends I decided to have in my life to view my profile and page. (yeah yeah and here I am blogging to the world I know)

A few weeks ago it occurred to me that there were probably other people with RA out in Facebook land. And gosh darn it there were! (yep I just used that phrase and I owned it!) I came across several groups. All welcoming and supportive. People asking questions, giving answers, feedback, lending a supportive ear to everyone. I feel amazing and lucky to have these new people in my life. People I don't know across the world praying and pulling for each other. It warms my heart. I know if I have a bad day I can log on and just read people's posts and know I'm not alone in this. Thank you to all the group creators. I look forward to getting to know you better.

4 comments:

  1. Hi Brigid,

    I enjoy reading your posts and your feisty sense of humor! I am recently diagnosed with Severe RA last December. There is a great network of support online, isn't there? I have perused the blogosphere and enjoy making friends with other RA-ers and have even written about it by the same title. Please visit my little corner of the RA Realm sometime...thrivewithra.org. Keep up the writing!

    Thrive With RA™

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  2. great post Brigid! love your posts.
    Nan
    www.livingwithra-nan@blogspot.com

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  3. Finding all the wonderful people on facebook that have RA has been a god's send for me also. I am excited also to read your posts... you write a lot like I do and have a lot of the same thought... enjoyed the first 2 so far :)

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  4. Hi! Great blog.

    For support, have you tried searching http://www.meetup.com for a support group for RA or maybe autoimmune diseases in general?

    A couple of years ago, I ended up forming my own meetup group for autoimmune diseases of any kind. Actually now it's opened up to chronic diseases. I try to organize a get-together once a month. There are over 60 people in my group now, but I think the most I've had for a "meetup" (usually lunch at a diner, or Panera Bread, etc) is about 5 people.

    Even with that support though, I find often I am too tired to take advantage of some of the support I can get .... or I just don't ask for help. But meeting with people and talking about our experiences and different treatments, doctors, medicines, etc is very enlightening.

    All the best,
    Anne

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