To my Friends and Family,
This is a letter I have been thinking about for a long time. I write this in hopes of making a difference in the lives of those who have faced the challenge of Fibromyalgia.
Today is Fibromyalgia Awareness day. Some of you know this - but this is news to many of you - just over a year ago, after months of life-changing and confusing symptoms, I was diagnosed with Fibromyalgia. At the time, I didn't know how to spell it or pronounce it correctly, let alone understand it. In the months since then, I have devoured information, learned a great deal about it, and in the process, have met others who have shared similar stories to my own.
The most tragic stories I've heard were not about the discomfort, confusion and fear over Fibromyalgia, or the challenges and the cost of treatment. It was the mis-information about Fibromyalgia and the effects of that mis-information on diagnosis, treatment and worse, the support and understanding of family and friends that is so vital to anyone who is confronting a life-changing illness.
The majority of what is known about this disorder has been learned in the last 15 years. While the exact cause is not understood yet, much is now understood about the chemical imbalances that cause the pain, chronic fatigue and brain fog (fondly called 'fibro-fog) that is fibromyalgia. There is a tremendous amount of information now about treatment options. I do find that much of it, especially what is coming out of pharmaceutical companies and traditional doctors offices these days, is geared toward alleviating symptoms, not eliminating the contributing factors and strengthening the body's immune system. The best of the new information seems to be embraced by Naturopathic Doctors (ND's) who treat FM/CFS holistically rather than symptomatically. This is my own two-cents worth after my last year of personal experience.
I have had an amazing journey and gifts of love and support from friends and family that have been overwhelming to me. I can truly tell you that I don't know how I would have managed this last year of my life without the love, emotional support and yes, even the financial support provided by friends and family.
At the same time, I have met doctors whose medical training was older than 20 years who said Fibromyalgia does not exist and recommended anti-depressants. And I have had people in my life question the 'realness' of the disorder.
I write this today in hopes that my experience may help someone else out there who faces the pain, confusion and fear that goes with the journey of fibromyalgia. I write to their friends and family - to you I plead - there are links below for the FM Aware Magazine and the National Fibromyalgia Association. Please read, learn, love and support someone in your life who faces this journey. It is real. There are tons of medical evidence now to support that it is real. Anyone these days who questions the reality of this disorder is basing their opinion on outdated medical information and mis-information.
My journey has brought me to a Naturopathic Doctor who through lab results, supplements and food changes and has helped greatly improve the quality of my life and my ability to manage FM/CFS. I'm re-engineering my professional assessments business to enable more work at home. With my business partners, we are helping organizations and individuals match the right people to the right jobs, develop top talent performers, improve retention and job satisfaction.
I am recovering not only my strength, but my happiness. I am making a major life and climate change to support my healing process and in the next month will be moving to Oakhurst California. It's the gateway to Yosemite National Park and there is enough beauty and temperate climate there to last me and my camera a lifetime.
Please feel free to forward this to anyone who you think may benefit from this information. I send it with love and a commitment to healing, happiness, sharing information and most of all hope.
Wednesday, May 12, 2010
Today is Fibromyalgia Awareness Day and my friend Lynne who was diagnosed with it a year ago has written a letter to friends and family explaining a little more about this widely misunderstood disease. She has agreed to have it shared ... so please pass it along.