Thursday, January 27, 2011

State of the Crusade Address

Holy Shazam folks, shut the front door! The t-shirts have been ordered and should be ready for sale in the next couple of weeks. Oh I am so excited I could cry. Tears of joy, of course! There is so much movement happening with The Fibromyalgia Crusade. I want to give a little recap of what we have achieved and also let you all know where we are setting our sights next. I have a million plans and goals and aspirations and little notes jotted down on my "to do" list. I could absorb myself in Fibro awareness 24/7 for the next month and barely make a dent. But living that crazy, hectic, high-pressure lifestyle is one of the characteristics that got me sick in the first place, so I must practice prudence and proceed at what I will now fondly refer to as "Fibro Patient Time" (FPT). I must practice balance and taking care of myself as my first priority. You know, take my own advice!

We are grasping the grass-roots of this awareness campaign and ripping them out by the handfuls, planting a solid foundation of blooming bushels of Lilacs in their place! We are talking to doctors (the good ones we like) and people are asking what our awareness bands are all about and we are gaining strength in numbers. We are growing stronger and bigger each day. We are gaining confidence and moxie and are no longer sitting around desolate, lost and alone. We are making friends and finding comfort and solace and trying every which way we can think of to get some quality of life back. We are putting our foot down when those we know and love, or just come into contact with, are rude and degrading. I am so proud of each and every one of you for seeking out support. I know it is doing wonders for me and can see how much better many of you are doing  as each day goes by. The ground-work for an attention-captivating Fibromyalgia Awareness campaign is firmly in place. This blog "went live" in August, our awareness campaign, The Fibromyalgia Crusade, was launched in September and The Fibromyalgia Fun House on Facebook started in October. As we talk and educate, and more patients seek out support for their diagnosis, it has become overwhelmingly obvious Fibromyalgia awareness is an illness in need of a makeover!

We need a unifying symbol, a common icon to identify us. There is so much division among patients and doctors regarding the scientifically unknown cause of this illness that obtaining acceptance or understanding from people without Fibromyagia darn near impossible. But we are here to change that! Fibromyalgia is an illness that does not discriminate, and neither do we. Despite our many differences, be it geographical, marital status, political views, religion, sexual orientation or ethnicity, to name but a few, we are all united in the fact that we have been diagnosed with Fibromyalgia. Unlike breast cancer, prostate cancer or AIDS, there is no commonly identified symbol for Fibromyalgia awareness (because it hardly exists!) and I have set the goal that our purple ribbon, with its shades of Lilac, Mulberry and Amethyst, will become that symbol!*

 What we have done...
  • Our support site on Facebook, The Fibromyalgia Fun House, has nearly 1,650 members.
  • This blog, Chronicles Of Fibromyalgia, has received over 37,000 hits.
  • We are the 5th most popular Fibromyalgia blog on Networked Blogs
  • We have shipped out over 300 The Fibromyalgia Crusade awareness bands and key chains.
  • We have developed a "Doctor Appointment Packet" to guide those who need help finding a good doctor. One that will take them seriously and work with them to manage their symptoms.
  • We developed a post-card sized downloadable informational summary that explains Fibromyalgia, The Fibromyalgia Crusade and The Purple Pain Code to pass around and spread awareness.
  • The "Purple Pain Code" has given us a quick and easy way to communicate mood and pain levels.
  • We have taken a stand and stopped seeking treatment by doctors that display disbelief, degradation or doubt in Fibromyalgia and refuse to continue making them rich! 
  • The Fibromyalgia Fun House has become a place to vent frustrations and despair to those that truly understand, and then wind up laughing cause we really are a silly bunch after all. It makes it easier to relate to our loved ones when they are not our sole source of support for this all-encompassing illness one simply cannot understand unless they have it.
    What we are working on:
    • T-SHIRTS have been ordered! It takes time to develop a quality product at an affordable price and I thank you so much for your patience!
    • A variety of other awareness items are in the works as well.
    • We are working on drafting letters to our various representatives in the U.S. government, requesting May 12th be declared National Fibromyalgia Awareness Day.
    • We are devising letters to inform the degrading and emotionally abusive medical professionals that don't "believe" in Fibromyalgia their behavior is unacceptable and is going to be reported to multiple medical authorities. 
    • I am actively searching for THE BEST Fibromyalgia research organization to donate 5% of the profits of the merchandise we sell. Any suggestions please email or message me.
      So as you see we are growing, making an impact and offering support, acceptance and guidance! We are taking control back in our lives. So many felt helpless and alone, were made to feel crazy, lazy, wimpy or like junkies. Fibromyalgia is a very real illness, but not to those that have never heard of it. So use your best asset, your voice, and start talking and just don't shut up until Fibromyalgia is a household word!

      Thanks for joining,

      Facebook ~ "The Fibromyalgia Fun House"

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

       *All of the thoughts, ideas and images including, but not limited to, the name The Fibromyalgia Crusade, the gradiated purple ribbon and the Purple Pain Code colors, are the intellectual Copyrighted and Trademarked property of Leah Tyler Enterprises. All attempts to use the aforementioned in part or in its entirety without the expressed written consent of Leah Tyler Enterprises is strictly prohibited. Any violation of this decree will result in immediate legal action.

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