Sick Girl Speaks!: Lessons and Ponderings Along the Road to Acceptance

Surprise! I'm still not dead! Okay, sure, I was born with an incurable genetic disease and, yes, I have faced terminal illness two times but . here I am! And I'm ready to speak!

I've now been navigating the Western medical maze for over three decades. Along the way, I've had to learn some pretty painful lessons about how to advocate for myself and what happens if I don't. I also know how scary and disorienting illness can be-I have a lot to say about finding peace and acceptance, no matter ...