Monday, April 18, 2011

Educate, Relate & Commiserate

After much soul searching and a heavy dose of acceptance, I am doing the equivalent of a corporate re-structure on my life. So angry and disappointed about the things I cannot do, things I fought so hard to get back after I got Fibromyalgia and CFS, that are now gone again after the strokes. I must face them head-on, at my own pace, to get them back. And then there is a whole new world of responsibility and obligation I have added to my life. Sure I "retired" from my 10-year career as a makeup artist and stopped having to go outside my home to work, but I have whipped up a whole storm in the world of Fibromyalgia advocacy and awareness and that has come with a greater responsibility than I could have ever imagined. The Fibromyalgia Crusade, this blog, The Fibromyalgia Fun House, they all started when Prednisone was surging super-woman through my body. Super-woman is gone, but my house of cards still remains, and I have been at such a loss as to how to balance my personal life and professional persona so my cards don't go flying out the door with the slightest gust of wind. I finally think I have figured it out. 

I had to go back to my roots, the entire intention behind all of this. I have found heaps of excessive expectation and misguided direction and just plain judgment piled up on top, hiding and confusing my true purpose. I have allowed this to happen, permitted myself to be swept up in the storm of frenzy and excitement. But storms end, and the sun eventually comes out again. See I promoted my blog publicly yet in my heart and soul remain a private and sensitive person. And each time criticism or anger or negativity have come at me (which it inevitably will if we choose to be viewed through the eyes of those we don't know) the most effective way to jolt me was to attack my efforts.  How did they know this? I knew I was doing so much to help heal the emotional hurt and promote awareness of what Fibromyalgia really is, but to my adversaries I was not doing enough, and certainly not where it mattered! I jumped right on the bandwagon with them, darn near leading the brigade. Oh did I take that criticism to heart!  According to those that have publicly maligned me, they expected heavy-duty government advocacy and lobbying to come from a girl recovering from 2 strokes at age 33, my little blog, Facebook page and brand-new awareness campaign. And hit after hit I was challenged on what I was doing to "lobby" for Fibromyalgia. Apparently to them that is the only way to make a difference, and they are amazingly ignorant as to what "lobbying" the government really takes. But I did back flips to try and meet these expectations. Sadly all I have done is halt any real progress and indulge in chaos. Just looking at it now makes me laugh and wonder where the hell my cojones were! Why didn't I tell these people to go sit on a tack and leave me alone? Go play in traffic, start your own lobbyist group to sit on Capitol Hill? Why did I allow the opinions of a handful of mean strangers darn near cancel out the thousands of friends that had found a group to accept, encourage and believe in them?

I am happy to report I have shed that snakeskin, shucked that corn cob. I am a writer who started a blog about Fibromyalgia. A Facebook page grew around that and out of the just plain ignorance so many were faced with The Fibromyalgia Crusade was born. Our mission statement reads loud and clear: "A patient-united awareness campaign..." That is what we are. Patients coming together to improve the quality of our own lives. Forming friendships with many that understand first hand how awful Fibromyalgia is. Gaining strength from knowing we are not alone in this journey from hell. Coining silly attachments to varying shades of purple that equate to our symptoms but help us feel understood. We have philosophies we subscribe to, such as refusing treatment from doctors that don't "believe" in Fibromyalgia. Taking responsibility for our own health and quality of life, to the best of our abilities. There are awareness items The Fibromyalgia Crusade sells, one of the most important being the Doctor Appointment Pack if one is still struggling to find a doctor to treat them, and how to conduct the appointment to get the most out of it. We have awareness wristbands, key chains and tee-shirts. They all serve to spread awareness and get folks asking questions. There is a postcard to print out to hand out to those that refuse to believe or just don't know what Fibromyalgia is. I hand those out abundantly every time I leave my house it seems. And the website is now a fabulous place for both patients and their "normals" to understand the complex world of Fibromyalgia. This is where we will rest, right now. We are still growing in leaps and bounds and have not even been around a whole year! We will eventually work towards a non-profit arm, plenty of lobbying and advocacy, lots of ways to expand our reach in the future. But for now I believe we are off to a brilliant start. What we are here to do is educate (website), relate (blog) and commiserate (Facebook). That is what we will focus on while our quick growth catches up with us. And if you are still looking for me to high-tail it to Washington and lobby Congress tomorrow to prove the authenticity of my commitment to spread Fibromyalgia awareness I sure hope you are holding your breath. Seeing you blue will be very funny.

Thanks for joining,


  1. Whew!! We are back on track. Love ya Leah.