The holidays are stressful for many people, but especially for the chronically ill. For those of us fortunate enough to have family members and friends still in our lives, the holidays can bring out paradoxical feelings of isolation, even when embedded within a family. Many of us have family members and friends who do not … Continue reading Navigating difficult interactions with a chronic illness
"When you hear hoof beats, thinks horses, not zebras." - Dr. Theodore Woodward, 1940 I am lucky in that I did not realize the fallibility of medicine until I reached the age of 38. This is when I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a devastating neuro-immune disease wrongly believed by many … Continue reading When medicine fails a child
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