So, yes, I want(ed) to race again. But this is bigger than running a marathon. One of the things that truly sucks about living with a so-called rare disease like sarcoidosis is you're invisible even in the spaces that are designed to help you. In clinical environments, you are a question mark. There are so many presentations, you could be suffering from anything...or nothing. In the world, you don't "look sick." In research environments you do not take precedence.
Even as it seemed elusive, I believed I would realize my dream someday. Well, someday is here.
For the first time in four years my ICD "delivered therapy," which I discovered days after "the event" when my electrophysiologist's nurse called to ask "if I was okay."
The disease has damaged my heart, but it doesn’t have to do any more damage if I can get proper treatment. Of course, proper treatment is expensive...
I need help, but since I don’t believe in getting or asking for something for nothing, for (and with) my heart, I propose the following exchange.
darlene anita scott 