Sure, I’ve had a hysterectomy (for different reasons altogether) – but that’s not the point. I am the best record keeper for my rare disease, which is still undiagnosed after over 5.5 years. All along I have told doctors exactly what is wrong and why it’s happening, and sometimes they can confirm it after a few years of treating me. The problem is that we don’t have all of the tests and scans necessary to figure out the etiology – our science hasn’t caught up. It’s not my fault. It isn’t the doctors’ fault either. However, my biggest obstacle is getting anyone to listen to me. Telling me that my tests are “normal” and therefore there’s nothing wrong with me is counterintuitive to my paralyzed face and spasming neck staring back at them.