Friday, April 20, 2012

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 illness which receives little to no respect or understanding from the world at large. In 2005 I became ill and have devoted my last five years to overcoming the debilitating and miserable reality of living with Fibromyalgia. My medical history is complex. My journey fraught with as much failure as success. I worked harder than I ever did for anything in my life to regain quality worth living, and am amazed to say not only do I survive, I thrive! But my heart is breaking…

I started this blog last March. It was a way to dissect and digest how life deposited me in the strange and foreign land I resided. I also dream of a career as a writer, and used the blog as an outlet to exercise those skills. But I was private, unsure. Embarrassed by the truth of my reality I kept it to myself, all the while progressing emotionally and physically in leaps and bounds. Slowly I begun to unravel the tangled ball of yarn my life had become and see some real progress. But my life being my life, at the end of July I had two strokes. Came within a hairs breath of death, but survive I did and with treatment I will live. High on survivors life I woke up. A renewed responsibility to my fellow man, Fibromyalgia patients specifically, was born inside me. I stopped caring about acceptance or judgment, going public with very intimate and private details of my life. Utilizing Facebook and my blog, I reached out to other normal everyday folks trudging through the grim and dismal misunderstood darkness that is each day when one lives with Fibromyalgia.

The response is overwhelming! People are crawling out of the woodworks to join up and gain support, a sympathetic ear, shoulder to lean on who truly understands how awful life is when one is forced to live sick in a world of healthy expectation. We are knitting together into a viable network of Fibromyalgia patients. All singing the same song, just to a different tune. As I became aware of story after story following the same devastating outline I found rage. Too much loss and suffering and ignorance surround 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. I want to make people recognize the suffering and loss and devastation is indeed real, as real as the air we breathe. I believe when thousands of Fibromyalgia patients come together and stand strong as one clear voice it can be done. If Fibromyalgia has touched your life, someone you love, someone you know, 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,

This blog was originally published on 9/5/2010. With gratitude to every person who has become a part of my Fibromyalgia world, I credit the success of our awareness campaign to you. Each person you stand before proud and tell you have Fibromyalgia, every doctor you fire for not "believing" you, all the mornings you get up to fight through another pain filled day, you are getting us there. Slowly but surely, step by step. We have not won the war yet but Rome was not built in a day and we are building!


  1. Amen Leah! Just because you look fine does not mean that you are! I hate when people judge you because you look OK, some days I just want to go to the store looking like I feel but I am just too vain to do that! I love reading your posts! You are so encouraging, and I am also a 10 year Endometrial Cancer survivor as well as a Fibromyalgia sufferer. I admire you so much for having the courage and the words to put down that help so many of us.
    Gentle ((HUGS)) Lisa

  2. I totally agree - your ability to put into words what I feel but can't express helps so much. I just struggled with forgetting my Lyrica on a trip and went 4 days without it and felt like a drug addict going through withdrawals for days. This illness makes me so mad and frustrated. I too look fine and hate it when people say if I would just exercise or work through it I'll be all better. NOT. It's good to know that there are others out there who are going through the same thing. Keep up the good work and thank you for your insights.
    Laura G from MSP

  3. New Follower... so glad I bumped into you on FB today... great blog... stop over to read some of my Fluff... often post about my Fibro Days...

  4. Sick and very very tired today.
    This is a great support I sometimes feel like an alien and like others have said because people can't see it they don't understand.
    Raising awareness is vital.

  5. People who suffer from fibromyalgia are plagued by persistent pain and chronic fatigue. These symptoms can make it difficult to shop for, prepare, and eat wholesome and nutritious meals. Nevertheless, a healthy diet is very important in helping people with fibromyalgia counteract stress, detoxify the body, and restore nutrients to the areas that need them the most.

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