Why advocate and raise awareness?

It is the ONLY CHOICE Available.

The thought that one of my children could possibly be diagnosed with Fibromyalgia is terrifying. What if they are not able to take Fibromyalgia by the horns as I have? What if they have a different type that is more debilitating than mine (no tangible proof there are different subtypes, just a concept). What if they don't have the same access to care as I? What if they hide behind a wall of shame or silence because of the stigmas and false perceptions that come as part of this diagnosis?

It was Saturday morning and we were on our way to Bruckner Boulevard. Weekly shopping trips with my Mom were the norm when I lived in the Bronx. We were chitchatting as usual and I was focused on the weekly circular checking the sales. As I gazed up, I noticed that my mom had shifted from the left lane to oncoming traffic. I yelled "we are going the wrong way!" My mom immediately moved over to the right and on to the right direction of traffic. She then went on to explain that periodically her mind would "wander off" sort of like when you walk into the kitchen and can't remember what you went there for.  I urged her to speak to her doctor and feared that this was early signs of Dementia or Alzheimer's.  During this same time, my mom had been experiencing pain and recently had arthroscopic knee surgery. In fact she had surgery in both knees and today still suffers from pain and walks with a limp.

As I think back now, a lot of what she experienced back then and continues to experience, points to fibromyalgia. The pain in all 4 quadrants of her body, the fibro fog, the rosey cheeks when fatigued, sleeping marathons, the depression, sensitivity in her teeth during times of flares, the frustration when not being able to do all the things as preplanned.  Although she has never been diagnosed with Fibromyalgia or any other pain disorder, I am convinced that I inherited Fibromyalgia from my mom.

As a parent, one of many responsibilities is to protect my children from harm and danger. How then CAN I be silent when there is a chance that ALL or ANY of my children might inherit a syndrome that has destroyed futures and taken so many lives?  I refuse to be silent!  Our children and future generations deserve nonetheless.

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