In honor of this being the first day of May and the month designated as Vasculitus Awareness Month, I'm going to turn this post over to my sister Jamie for a guest post on her experience of living with one of the Vasculitus diseases.
Those of you who follow my blog might remember the month long vigil we held in her ICU room in the summer of 2010 when we almost lost her. Or you can go here and here to read about it.
Vasculitis diseases are autoimmune disorders and they come in many flavors. Jamie was finally diagnosed with the flavor Wegener's which causes inflammation of blood vessels in the nose and throat and organs and causes inflammation in the joints which is quite painful. She has developed scar tissue in her throat that necessitates dilation surgeries every 3 to 6 months. Last year during one of those surgeries the doctors had to install a long term trach.
With that intro I now turn you over to Jamie but stay tuned at the end for an informative video about Vasulitus.
I have always been relatively healthy, breathing, running, jumping, walking the three miles around lake Sacajawea in my home town of Longview, Washington. walking a mile to school and back daily. But in the winter of 2008 that all changed for me. I woke up in pain, my knees hurt to where I couldn’t walk to the bathroom, so I called an ambulance and then called my brother.