Friday, May 13, 2011

Today Is Fibro Awareness Day Yeah!

Blogspot decided not to work for the all of May 12 so this is yesterday's blog:

Today is our day, folks! Today is the day that has been set aside for all the Fibro patients the world over to feel validated and shout out awareness from the rooftops. In all honesty, even though I have had Fibromyalgia since 2005, this is the first May 12 I have greeted with enthusiasm. I just looked back at this blog and there is no entry for May 12 last year. It just did not seem like that big of a deal to me because I was not part of any community. I was just a woman who was grateful to be back to work and decided to practice a long-standing love of writing by starting a blog. It focused on my Fibromyalgia journey and was an overwhelmingly cathartic experience that helped me immensely in coming to emotional terms with what had happened to me. But it stayed private and unpublished. I got up enough guts to take that Intro to Spanish class I had been dreaming of taking for so long. I observed myself actually learn and retain new information and that courage propelled me to look into a graduate program in English Literature. And then last summer, IT happened. For some odd reason still unknown, the blood vessels in my brain started to expand and contract rapidly and I had 2 strokes. I survived, with my central nervous system a little more fried and a few minor losses in cranial function, and was put on high dose steroids for 6 months. I went nuts!     

I know now part of it was the drugs, but the sheer high one gets out of evading death is incredible! I saw life as if it were the first time. I stopped trying to control everything and decided to hand over the reigns to my God. The overwhelming gratefulness I felt towards surviving those strokes re-sparked the overwhelming gratefulness I felt towards surviving Fibromyalgia. And it became clear to me I had a responsibility to publish that secret blog and see what happened. So I started my Facebook page and "liked" all the Fibro sites that looked even remotely interesting, friending those profiles that stood out from the rest, and posting little blurbs of my blog on many pages every day. I called, beckoning the public to view my words, read my memoirs, glimpse at the heart and soul of who I am. Well for some odd reason I think people liked my blog! They could identify and felt understood and really liked the way I wrote. I was astounded. What ensued was a frenzy of blogging and networking, inadvertently creating a support page on my page that quickly became its own page, The Fibromyalgia Fun House. The hits kept rolling, new people kept on commenting, and pretty soon I recognize the state of affairs for Fibromyalgia patients out there in the world is AWFUL! I thought I had a hard time getting that painful little monster under control. Here I was meeting people that were degraded and dismissed, ignored and treated hysterical. Abandoned and disabled and uninsured. It broke my heart.

So I decided we needed to do something about it! The quickest way I could see to affect change was to get the patients to stand up for themselves. To do that they needed strength and resources and support, all sorely lacking from my vantage point. The Fibromyalgia Crusade was born, a patient united awareness campaign, and I set out to steamroll Fibromyalgia into the reality of as many doctors and daughters and husbands and best friends as you all would allow. I was en fuego!  Unstoppable! And now this, my friends, is where we are. I am a full time blogger and founder and president of a pretty snazzy awareness campaign. One I believe in with all my heart. And the support I get out there is incredible. As it has been my awareness campaign, it has become your awareness campaign. Your chance to grab onto something you really need; support, unity, love. Your chance to change your life in the way only you can do. And with a lot of hard work and determination and fight, so many have taken their lives back. So that is why this May 12 means so much to me. Because of the entire world each and every one of you have let me see, your world.  Because of the support we have exchanged and shared. Because each time I hear from all of you it keeps me going. Fighting this fight. Spreading the word. God bless you all, I love you.

Thanks for joining,

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