Anything Goes : Awareness...Vasculitis More Common Than You think...More Deadly than you know by Heather McGill Caldwell

I have Wegener's Granulomatosis, prob the most common Rare Disease around. I've struggled to find appropriate Physcians for care. I was sent out of my home state for DX because no one here (NC) locally knew what to do. Official DX was via The Cleveland & Mayo Clinics. I am one of the lucky ones. If I wasn't able to finance my own trips to seek out of state help, who knows what my story would be. Had I given up after the first ten doctors told me it was A Chronic Sinus infection, Allergies, Asthma, Mono, Sleep Apnea, Depression, Anxiety, Chronic Fatigue, only in my head, drugs (I've never even tried pot) the flu....I might not be here today. So yes, I am loud & opinionated now. I speak up not just for myself, but for others who can't. I think where Rare Diseases are concerned, the vast majority of the Medical Community has failed. My 2 minutes in HollyWeird...Who knew Toby would become Spider Man & I would just be grateful to be alive. I wouldn't trade with anyone though. Wegener's has changed me in a way that I can't define. However bad it may be at times, the people I've met along the way, loved & too many lost, are forever etched in my heart. Every one of them. It is for them & because of Wegener's, I am stronger in spirit than I've ever been, even when my body sometimes fails me. It is my mission to be heard, no matter how many times & who I have to tell my story & for those who can no longer tell theirs. I will not become, nor let those who've passed before me become...just another unknown statistic. This is who I've been.... Wife, Mommy of 2 Beautiful Girls, Sister, Friend, Weggie (BodyMate of Wegener's Granulomatosis) Animal Advocate, California transplant,Office Manager MoTec Systems East-Racing Industry, modeling, acting and random craziness! https://vimeo.com/m/80337909 This is my life.... https://drive.google.com/file/d/0Bzk2qDJL2zbvd29Xc0I1cXJSZmc/edit?usp=sh...