Wednesday, December 22, 2010

People Are Actually Wearing Awareness Bands!

When I left the hospital in August, got the guts to go public with my blog and started promoting it on Facebook Fibro sites I was looking in one direction. I was looking to gain attention as a writer and hopefully score a book deal, magazine column, something along those lines. But the more people I met, the more stories I heard, the more heartbreak that was brought to my attention turned my focus from my original intention and I quickly converted into a Fibro Crusader! I did not know what to do, but felt a strong pull, a calling to focus my efforts on something that will make an impact on the actual day to day lives of my growing number of Fibro friends. The Fibromyalgia Crusade popped into my head and I had no idea what it was, but knew it was where I was to put my attention, direct my energy. It has slowly formed into a patient-united awareness campaign consisting of a support site on Facebook (The Fibromyalgia Fun House), a blog (Chronicles Of Fibromyalgia) and accumulating a number of Fibromyalgia patients. We are finding our sanity in connecting with others and recognizing these strange symptoms we go through are in fact normal for a Fibro patient. Friendships are forming, hearts are mending and courage is building as we form a community dedicated to non-judgmental support and genuine care and concern.

A while back someone suggested a The Fibromyalgia Fun House t-shirt and that got me going... I realized people were proud to be a part of this community, were gaining strength from it and wanted to show it off. So I set about starting a business that would one day turn into a non-profit. I put together a Doctor Appointment Packet for those that are having a hard time finding and communicating with a good doctor to get their symptoms managed. I bought domain names and copyrighted writings and ideas and trademarked a logo. Then I took a leap and ordered custom awareness bands. Following our Purple Pain Code I designed them to represent all the phases of suffering we go through, and they gradiate in color just like our The Fibromyalgia Crusade ribbon. I was nervous, for this was money out of my pocket and I was still a bit unsure all these "friends", all the supporters, were for real and not just a figment of my imagination.

And then the strangest darn thing happened...I started getting orders! They started pouring in and I knew for sure I was not hallucinating the whole thing! People are actually wearing these bands with pride and telling their friends and family about the blog and support site and the Purple Pain Code and low and behold, folks, we are in business! The t-shirts are taking a long time to perfect. I will only sell a quality product I will stand behind with pride and when the t-shirts get there, I will start selling them. You gotta remember a Fibro patient is running this whole thing! But I sincerely thank each and every one of you for your support and participation. When writing my business plan I had to describe my vision, my goal. It is to become the internationally recognized symbol of Fibromyalgia awareness. When one thinks breast cancer the first organization that comes to mind is Susan G. Komen. When Fibromyalgia is understood on a household level, when we are no longer treated like crazy lazy junkies, when the word is out and the name Fibromyalgia is uttered, the first thing that will come to mind is that gradiated purple ribbon and The Fibromyalgia Crusade.

Thanks for joining,


  1. LOVE this! Best of luck! I just know you will make a huge difference in the world!

  2. I cant wait to get one for myself. I think they are a great idea

  3. My step mother.....who is a nurse and was a "non-believer"..... saw my band and wants one of her own!! She said she NOW understands how I can paint my house some days and then not be able to leave my recliner on other days! The word IS getting out!!! Go Leah!!

  4. I just ordered a wristband and doctor's packet. I love the purple and I am feeling the need to hone in on some of my symptoms. I can't wait until the t-shirts arrive. Best of luck to you Leah, you are a true crusader!

  5. Hi Leah, You should be so proud of what you are accomplishing! It is truly amazing and you are awesome! Good luck to you and I wish you lots of success!

  6. I was wondering if they were made. I wear a pink one for breast cancer.
    I was happy to see there are bands so I ordered one.
    I'm glad to make people more aware of this disabling ailment.
    Thanks for sharing Leah.

  7. I got my band today and put it on straight away. I will wear it with pride and hope that people ask me what it's about :)
    Thanks Leah!!

  8. And God bless your heart for it Leah. i have personally loved your blog and feel a kinship to all who read it. <3