Thursday, August 16, 2012

If I Could Change The World

When I started The Fibromyalgia Crusade I was as high as a kite. It wasn't by choice and was most certainly not any fun either. But a prescription of high dose steroids was the medication required to treat my particular type of strokes, so high I was. Oh I had such grand ambition! Feverish, frantic ambition. I was gonna raise up an army of fighters formed to take the Fibromyalgia world by storm! Governors and Congress were going to be pelted with hailstorms of letters. A mission to identify and fire all the doubting doctors would sweep the nation. People wearing their Fibromyalgia awareness tattooed on their foreheads were going to rise up and the world was going to hear us and the world was going to change, damn it!

And then I got off Prednisone. It was a terrible crash from a horrible high, and once again I had to figure out how to get raging Fibromyalgia under control. This time with the added burden of a brain repairing from two fizzled tap outs. Basic functioning became tough, normal living even harder. One day I fell on my knees while walking the dogs and spent three months quivering down the stairs with less stability than my 95 year-old grandmother. I'd gained epic amounts of weight and hurt in places I didn't even have to hurt before the pounds packed on. No longer employable in my field, we were having serious money problems and my husband's life continued to spiral deeper into the mire of pure miserable survival while he worked himself to the bone and worried about me. Needless to say life had become a living hell. But it was not my first trip to living hell, just yet another return voyage. So once again I did what I have done every other time I found myself there. I fought with everything I had to get out.

It's been a few years and I am finally starting to see the sun shine again. However none of the flurry of earth shattering activism I intended when envisioning The Fibromyalgia Crusade was spun into action. I just couldn't do it. Like many a Fibromyalgia patient I've had to assess my goals and ambitions and compare them against what is physically and realistically possible. Improving the lives of Fibromyalgia patients today and tomorrow has always been our mission, and we are accomplishing this in many ways. Over 2,300 of those tri-colored wristbands and keychains are spreading awareness out there today! Patients have found hope, answers and friends. They have worked to improve their lives, started believing things could change. Or at least feel a little less lonely if they can't. I have focused my efforts where my heart his, in my words, by writing a book to bring awareness into the hands of those all around us who just don't seem to understand. So while by different means than originally aspired, The Fibromyalgia Crusade is very much championing the cause. Empowering the patients to advocate for themselves and showing the world what people with a cause are made of. By recognizing this awareness campaign is ran by an actual Fibromyalgia patient and adjusting expectations, The Fibromyalgia Crusade has grown up. The letter writing, doctor firing and National Institute of Health pressuring are still on the buffet table, but aren't gonna be eaten today.

Thanks for joining,

1 comment:

  1. Hi Leah! I also started off thinking that I am going to spread awareness. I live in South Africa and very few people here know about it. I can also not work anymore and am really struggling to keep head above water. SA is about 10 years behind America. I am lucky to have a great doctor though. If you have any ideas how I can spread the word please give me some tips! Thumbs up for your blog!