It’s My Birthday

I have never blogged before. Maybe because it felt exhibitionistic or maybe because doing so presumes people will be interested in what I have to say. But recently, I have felt a need, an urgent and desperate need to express myself- to share what’s going on with me and my body, to help people understand what it’s like to live with a progressively debilitating disease and ultimately, to help raise awareness and call attention to this orphan disease. The truth is, hardly anyone even knows the name of this disease that I suffer with every day. Read more “It’s My Birthday” →