I saw Dr. Ian Carroll, an expert in cerebral spinal fluid (CSF) leaks from Stanford University, for the first time recently. He spent 1.5 hours with me and was very thorough, asking me a series of detailed questions he uses to assess patients for possible CSF leaks (see below). I have ME/CFS and hypermobile Ehler-Danlos … Continue reading Through the looking glass with Dr. Ian Carroll: Cerebral spinal fluid leaks and hEDS as alternate reality to ME/CFS?
Yesterday I woke to a blue rose. I should have known something was wrong when there was very little activity in my favorite ME/CFS groups on Facebook. Blue rose days are like that. The community retreats in silence and grief on these days. We are afraid to admit what we all know: ME/CFS can and does kill. … Continue reading Blue rose days
After 11 years of marinating in chronic illness, my ability to work has all but evaporated and I have entered the world of fulltime disability for the first time in my life. This time of year would normally mark a return to university life after the summer break. Right now, my professor colleagues are putting … Continue reading Losing a beloved career to a chronic illness
As I waited in the examination room, my excitement grew about seeing one of the world’s leading specialists for my condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I had seen him six months prior and felt that we were finally ready to get down to the business of improving my health. I have been chronically ill for 10 … Continue reading The danger of pushing yourself on the “good days” of illness