Saturday, February 19, 2011

What Exactly Is This Fibromyalgia Crusade Anyway?

When I first opened up my blog and began to meet so many fellow Fibro patients I was amazed. And not in a good way. I discovered an emotionally abused, frequently abandoned group of people that were beaten down and barely hanging on. No, not everyone, but entirely too many none the less. So many had lost hope, lost their fight, and were just existing in a suffering and miserable condition. Life was NOT getting better for them. The sheer number of those that had lost their marriages, jobs, health insurance, homes. It was staggering. As was the complete lack of anyone doing something progressive and actionable about it. So I got all fired up and blogged on September 4 last year that I was starting The Fibromyalgia Crusade. I had no clue what that meant or what it was, but knew that would come; the knowledge, ideas, money. I  saw a patient group that was large yet lacking any sort of channel to improve their quality of living. I guess this is my solution for that channel...

Our Mission Statement:
The Fibromylagia Crusade is a patient empowered and united awareness campaign created to spread support, strength, knowledge, understanding, compassion, inspiration and laughter. Through our own efforts we raise Fibromyalgia awareness in order to instill a better quality of living for ourselves.

So what exactly does this mean? It means we the patients get together. And each person takes on a personal responsibility of how they are going to change and promote Fibromyalgia awareness, improving their lives in the process. There are MANY ways to do this:
  • Realize YOU are the only person that is going to get You better.
  • Get a handle on your health. Only work with doctors that are working with you to find a successful treatment plan! Don't continue with dismissing or degrading medical professionals. The goal is two-fold: Get your pain and sleep under control and DO NOT continue to expand the wealth of doctors that do not "believe" in Fibromyalgia. It is hard to find and start up with a new doctor. We have a Doctor Appointment Packet available to aid in this process if you need assistance. But if you can't get out of pain or sleep you can't fight a war, and that is where we are going.
  • Find a support network of fellow patients so you can vent and complain and laugh with people that truly understand. This takes a major burden off your relationships with the non-Fibros in your life.
  • Respect the 5 pointed star of health: Sleep, Diet, Exercise, Stress and hormonal balance. Make conscious decisions to live a healthy lifestyle, it will often minimize your symptoms. And don't expect to be perfect, just kind to yourself.
  • Educate and advocate with your words, Fibromyalgia Crusade postcards, tee shirts and awareness bands.
  • Thicken up that sensitive skin lots of us suffer from and change the mentality from victim to soldier.
  • Participate in "Annoy Your Government" letter campaign. More information to follow.
  • Participate in good doctor thank you letters and bad doctor shame on you letters. More to follow.
We are 5 months old. I think we have done a pretty darn good job so far, if I do say myself! We are growing and expanding and getting stronger every day. What we have IS real and WILL one day be figured out. But until that happens we are going to demand the best quality of life possible.

Thanks for joining,
Leah

For Tee Shirts and Awareness Bands:
http://leahtyler.com/Purple_Pain_Code.html 

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

3 comments:

  1. Hear, hear! So excited about the Crusade. :)

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  2. I like the "Annoy Your Government" letter campaign, especially since there are 3 government letters annoying the heck out of me right now : I , R and S. LOL!

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