Saturday, September 4, 2010

The Fibromyalgia Crusade

I am launching THE FIBROMYALGIA CRUSADE! I am a Fibromyalgia patient, not a doctor, scientist, researcher or PhD. I am a real woman living a real life with a real disease that receives little to no respect or understanding from the world at large. I became ill in 2005 and have devoted the last 5 years of my life to overcoming the debilitating and miserable reality that is living with Fibromyalgia.

My medical history is complex. My journey fraught with as much failure as success. I have worked harder than I ever have for anything in my life to regain a quality worth living, and with an amazing support network am amazed to say that not only do I survive, I thrive! But my heart is breaking…

I started this blog, “Chronicles Of Fibromyalgia”, last March. It was a way for me to dissect and therefore begin to understand how life had deposited me in the strange and foreign land I found myself residing in. I also dream of a career as a writer and utilized the blog as an outlet to exercise those skills. But I was private, I was unsure. I was embarrassed by the truth of my reality and kept it to myself, all the while progressing emotionally and physically in leaps and bounds as I begun to unravel the tangled ball of yarn that my life had become.

And then at the end of July, mere days before my 34th birthday, I had 2 strokes. I nearly died, came within a hairs breath, but have miraculously recovered and with treatment am going to be just fine. This near-death experience woke me up! It renewed in me a responsibility to my fellow man, Fibromyalgia-sufferers specifically. I stopped caring about acceptance or judgment and went public with very intimate and private details of my struggle. I utilized Facebook and my blog as a way to reach out to other normal everyday folks trudging through the grim and dismal misunderstood darkness that each day is when one lives with Fibromyalgia.

The response has been overwhelming! People have been crawling out of the woodworks to link up and gain support, a sympathetic ear, a shoulder to lean on that truly understands how awful life can become when one is forced to live sick in a world of healthy expectation. I have knitted together a small network of fellow-fibrates that are all singing the same song, just to a different tune. As I have become aware of story after story following the same devastating outline I have become enraged! There is too much loss and suffering and ignorance surrounding this condition. With every beat of my heart I want to change the reality of living with Fibromyalgia. Take it from a doubted and questioned condition and give it the validity it deserves. Make people recognize the suffering and loss and devastation is indeed real, as real as the air we breathe, and I believe if the THOUSANDS of Fibromyalgia patients out there came together, stood strong as 1 voice, it can be done!

So if Fibromyalgia has touched your life, someone you love, someone you know, please join THE FIBROMYALGIA CRUSADE. We can change the reality of living with this disease from one of devastation and loss to one of support and understanding, but only if we band together. Come join my army, for we are going to fight, and we are going to win!

Thanks for joining,

1 comment: