When I first published this blog I was a stranger to the court of anonymous public opinion. I thought I knew all the answers. I had experienced total devastation and worked my way back to a decent quality of life. I believed if I did it, you could too! I was also on high-dose Prednisone and had just survived a near death experience. Needless to say I was floating around on my own personal little cloud nine. As more people read this blog more people reacted to what I had to say. Good or bad or ugly, there was no shortage of people to please and piss off. I learned very quickly how thoroughly obnoxious, "I did it so you can too" is. But perhaps the biggest thing I learned was just because I did, that most certainly did NOT mean everyone else could too. For this illness is as individual to each patient as fingerprints are to a human.
But people asked what I did, how did I get Fibro managed, they wanted to know. So I started The Fibromyalgia Crusade as a way to share what I have learned, among other reasons. For there was a phenomenal education which came with understanding what happened to make me so sick. And an even bigger one with what I did to get my life back. I also was so saddened by the state of affairs for Fibromyalgia patients in general. I learned I was not alone in struggling to find a doctor to take me seriously, losing my social life, career, bank account and everything else that tanks when life gets sick. The quickest way I saw to affect change was to encourage patients to take their individual power back, power I know I was stripped of when I was horribly ill with an illness I was told had no treatment, no cure. And very little understanding by both medicine and society. I was not capable of doing much more than writing and inspiring. But the patients, there were sadly just so many of us, and we are how real change is begun, with numbers of people singing the same song. So we started selling awareness items for people who were so inclined, to spread awareness and education about Fibromyalgia Syndrome.
Then I came off Prednisone. Oh my, I was in so far over my head! Not only had Fibro come to engulf me, bigger and badder then ever, but the strokes left me with gaps of burned out synapses in my brain. I have been working hard to grow new neuropathways around them. It has been a challenge. And I forgot how to be the type B I was certain I had successfully convinced myself I was. Goodness gracious it was the only way I survived CFS/ME! It has been a very interesting road ever since. Up and down I go as if on a swing-set while I mentally and emotionally recalibrate to this next stage in my health journey. So here we sit today, bigger and louder than ever. A year and a half in I want to thank you, my readers. You challenge me, encourage me, give me inspiration to look up to. You keep me accountable and through your interaction and insight not only show me the unbreakable will of the human spirit, you make me a better me, too.
Thanks for joining,