Thursday, October 14, 2010

Welcome To The Fibromyalgia Fun House

Two days ago Leah Tyler's Fibro-Fun House Facebook page moved out. She was taking on a life of her own and needed her own space. There are benefits to a "page" or "group" that my readers and Fun House friends were inquiring about. I still don't know the difference (or what I signed up for), remember, give me the abacus! But mainly it boiled down to more privacy. The conversations and comments are more self-contained than those on a "friends" page. Most don't want to wear their Fibromyalgia battered heart on their sleeve for all their friends and family to see and needed a more private forum to get a deeper level of support. So the Fibro-Fun House became "The Fibromyalgia Fun House" and has been on a momentum building rampage since Tuesday night! Once again it has been met with an overwhelmingly positive response. I am having a blast meeting all sorts of new folks and thrilled to see my existing friends coming over as well. The newbies seem to be a bit taken aback at first. We are a wacky bunch! We believe in the right to bitch and moan and complain, and then laugh our asses off at something funny or stupid or sad or pathetic that only "we" get. We are an honest bunch, nice and supportive yet still sarcastic and sardonic or even a little naughty at times. But the greatest attribute I keep finding is we are kind to each other. We offer support, listen, give advice or simply say with all the honesty in the world, "I am so sorry and totally understand where you are coming from." Sometimes hearing that is all you need to gain a little pep to get through that next tribulation living with Fibromyalgia rolls at you.

We are on a mission to change the face of living with Fibromyalgia. The campaign is called "The Fibromyalgia Crusade" and yours truly is working hard on sliding all the pieces into place before publicly revealing it in detail. It is a patient-united awareness based campaign whose sole purpose and mission is to get Fibromyalgia recognized as a real medical condition while science and medicine work to figure out the how's, why's and what to do's about it. We are demanding respect to stop being treating like we are lazy, crazy, wimpy or junkies. We are mad as hell at how we have been backed further and further into a corner trying to defend ourselves and our right to be sick with something no one understands. We are sick and tired of being treated poorly by the medical community and are not going to stop until all 6 million of us stand up nationwide and collectively stomp our foot at the madness, if that's what it takes! So welcome all my new friends, glad you found us to my old, and get ready for the storm a bunch of pissed off Fibrates are going to bring down around those that have dismissed us and degraded us and demeaned us for entirely too long!

Thanks for joining,
Leah

4 comments:

  1. Hi Leah,

    I'm so confused!! What else is new? You've got so many wonderful projects here, but as a newbie I'm having difficulty keeping them all straight! You have you blog here... Chronicles.., then the Fun House which is a forum on Facebook, right? Where is The Crusade to sign up for? Where is your article Friends or Foes? Help! lol

    Catherine

    ReplyDelete
  2. Oh Cathy is my ADD getting to you? LOL The Fibromyalgia Crusade is in the works so there is nothing to sign up for yet... I will keep you all posted on that one. If you go to the top of this page on the right there is a search box you can type in "Facebook Friend Or Foe" and the post should come up. Let me know if you still have trouble. Bare with me I am not the most techno savvy person around!
    Leah

    ReplyDelete
  3. Leah,
    I am glad you have so much of yourself to share with the Fibro Community. I appreciate the time and effort you put into it.
    I too have ADD only with the H as well, IE:, ADHD, but I am not so Hyper today, wish I was. I am so damn tired all the time. Any who, Keep up the good work and keep your wonderful humor going.
    Smiles and Hugs, Eileen

    ReplyDelete
  4. I'm another A D D fibromyalgic, really wish I had the H.

    ReplyDelete