Why Should I....

give a rat's arse why 90% of the population is apathetic? It's not just 90% of the population as a whole, it's only those who have RSD. Figured I should be more clear about that lest someone accuse me of being a people hater. I have to get this off my chest or it is going to eat me alive!

In May 2003, a month or so after being diagnosed with RSD, the writer side of me sprang into action. A really great idea popped into my Big Brain. I researched, I took notes, I emptied cartridge after cartridge of printer ink. In researching RSD I looked for how many people had it. I was shocked when I couldn't find them. I found guesstimates. The low side of 200,000(laughable), up to 8 million people with RSD in the United States. I looked for surveys. A couple had been done but still gave no concrete numbers. Not like there is with depression where x million people are dealing with it. MS, x million have it and x number are diagnosed each year. I could go on but I think you get the picture.

I was already mulling over my idea, a book about RSD. I wanted some concrete numbers for my book. I wanted to prove this was not a rare disorder. I didn't want it to be all facts and data but I need those numbers! I pulled out paper, grabbed a pen and made up my own survey. If no one else could take the time, I sure as heck would. I also wanted stories. The lives of those who have RSD telling how it affects their lives, their bodies, how it changed everything and how it affected those around them. I didn't want them to write a book, just their tale of RSD.

I was so excited to be doing something. I was going to conquer the world, bring awareness to all. This is why I got RSD. I found I had a purpose for the first time in my life. There was a reason I had survived this long. In 2 years, May 2003 to May 2005 I had a whopping total of 55 people take my RSD survey. A handful who wrote their stories. That's it. I was stunned and baffled. The internet lines fairly vibrated with the outrage of millions with RSD screaming. Wanting awareness, education and for RSD to be as well known as MS, breast cancer and others. Here I was on my way to doing it and a measly amount of people took the time to help me. Why?

I have no answer, even today. Six long years have gone by and I still can't understand. The same things are being said today in regard to RSD. I decided to try again. Maybe this time it would go better. I'm sorry to report it hasn't. I posted the results I have so far on a couple of boards. One board shows 33 people have viewed it, none have responded. The other board there are now over 200 views and not even a quarter of them have asked to take the survey. Apathy still has a choke hold while everyone sits around whining and complaining about the same thing. I have had 2 handfuls so far fill out the survey.

I'm tired of trying. I'm sick of people flapping their mouths, whining, moaning, complaining. I'm fed up with people who won't get off their ass and DO SOMETHING!

I want to publicly thank those who have taken it so far. Thank you all from the bottom of my heart. You are awesome and among the few who aren't just all talk. Thank you for every compliment you have given me for doing something. I don't feel special. I don't feel I am worthy of the heartfelt words. I will accept them with grace and remember each one of you forever. I will continue fighting because it's who I am. I will not give up no matter what because it's who I am. Thank you all for believing in me. Thank you for giving me a reason to never quit.