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An Unmasking of Sorts

I have not been faithful as I have intended to be posting to my blog about NF. But that is about to change. I said in the first post that I wanted this to be about advocacy and about my personal journey with NF, as well as keeping others updated on Arabella’s journey. I have a few posts already typed ready to be posted but needed to take a moment to unmask. When I say allow me to unmask, do not misunderstand that statement. I am not implying that I am “fake” or pretending to be OK. By unmasking I mean let me reveal what all is going on. When you deal with chronic pain, with no relief, on a daily basis you learn to live your life as normal as possible. I push through my routine like everyone else. I try hard not to let the pain take over or alter how I do things. But the reality is, it DOES alter how I do things. My normal changes daily. I can reach for something and just the slightest wrong touch of my fingers will send excruciating pain throughout my body. The neurofibro...
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The Beginning...

This blog is for the purpose of reflection and expression. In my journey of dealing with the day-to-day struggles of NF, I keep so many emotions and thoughts inside. I don’t want to burden others with my struggles. I even shield those closest to me from these feelings. I want to be strong for them, I desire to be the “fighter” that I have always been because of this condition. In some circles, they call us with NF “heroes” and that is a moniker I am not sure I can embrace easily because I do not feel very heroic. I’ll save that for another post, this post is about the beginning. How my journey with NF began. I am the middle child and only boy of 5 children. I am the only one in my family with NF. I am what they call, a spontaneous mutation. I was young at the time of diagnosis, 6 years old I believe. I recall numerous appointments with my pediatrician due to the café au laits on my torso and other areas. He suspected NF and sent my parents and me to the Children’s Hospital in B...
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