Thursday, January 6, 2011

Just To Reiterate...

When I first went "live" with this blog in August I was just plain scared. I had spent the previous 5 months pouring my heart and soul onto the pages of this computer screen, unpublished and unadvertised, and after my strokes determined I was ready to take the (gulp!) leap to publicity. My Fibromyalgia journey was too important to keep to myself, for I know many who exist in misery for their entire lives and I had somehow navigated myself to a managed state and was actually getting my life back! What I had written was deep, personal, a mix of the past and present impact Fibromyalgia had on my life. So I took the jump, promoted this blog and was shocked and amazed at the response it garnered. People wanted to read it! And they kept coming back for more! Pretty soon my Facebook page became a "support group" of sorts where people would come to gain strength, vent and complain yet ultimately find a laugh or two to cheer them up on their way out the door, back to living life with the frustrations of Fibromyalgia. Then that got so big an actual support site, The Fibromyalgia Fun House, was created. And the hits kept coming to the blog, and more and more people found solace and strength and a community to be a part of that completely understands how miserable and challenging life with Fibro truly is. Then The Fibromyalgia Crusade was birthed, for the outlandish treatment Fibro patients receive from friends, family, doctors and the community at large must be stopped. With the power of each other behind us, we are rising up and saying ENOUGH! We are finding the strength to force the unbelievers to stop and take notice that Fibromyalgia is indeed real, real painful, and a son-of-a-bitch to live with. We are headed great places, folks, and I am ecstatic to see how far we will take this awareness campaign!

There are a few basic precepts that are the cornerstone of our success. These few ideals are what make The Fibromyalgia Crusade unique and are ultimately responsible for its necessity and growth. Seeing as Fibromyalgia does not discriminate, neither do we. We accept everyone, regardless of level of disability, chosen course of treatment or co-existing medical conditions (as long as your are nice to us). We respect that not only does this illness affect everyone differently, but there are many different stages to it as well. We DO NOT tell others what to do or judge them for their choices, instead we offer information from our own personal experience. Some find inspiration, hope or ideas from this anecdotal input, others do not. We encourage each other and remind each other that the expectations from the outside world are often too big for us to assume. We remind one other it is okay to take it easy and not push and expect perfection or amazing feats out of ourselves. We truly get it when someone is having a hard day or excessively long flare and are ready to explode. We offer true, compassionate and kind non-judgmental support. That is the spirit, heart and soul of The Fibromyalgia Crusade and all the other entities that comprise this awareness campaign. Just knowing there is a community standing behind you is making it easier for some to lay down their shame and proclaim the truth of their life. It has for me. I find my mouth flapping everywhere we go and have to carry awareness bands and information cards with me at all times, I am generating such passion in people that don't even have Fibro, or know anyone that does, wanting to show their support!

But I need to insert a gentle reminder here about the point of view my blog is written from. I was a very sick woman who was disabled and could not leave my house for months. I spent years extremely depressed and angry. When I did return to work I lived on pain pills to get through and I was miserable. I have tried MANY treatments, conventional and alternative, some which have worked and others that have not. Through it all I have progressed to what I call "managed" Fibromyalgia and slowly started re-building my life. Then 2 strokes knocked me on my ass in July, the treatment was steroids, and I became a bit of a loon. I am now returning to normal and am bewildered and amazed at the frenzy my little blog has whipped up! And overjoyed, for I have found the purpose of my life. So please keep in mind when I blog it is about my personal experiences, all I know. I am not a doctor nor an expert. My accomplishments/successes/methods of treatment are not an expectation for anyone else, simply what I have gone through. I am in a positive place in my Fibro journey, and this is certainly NOT the attitude I would have presented when I was in the thick of my misery. I try to inspire, give others hope, but place no demands or expectations on how each person chooses to treat their Fibromyalgia, and expect and enjoy that same attitude out of my friends, my readers, you.

Thanks for joining,

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook. Thanks!


  1. I am very glad you were able to pour your heart out! Love your blog and fb posts. I am having a mulberry day after PT.