Navigating difficult interactions with a chronic illness

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

Through the looking glass with Dr. Ian Carroll: Cerebral spinal fluid leaks and hEDS as alternate reality to ME/CFS?

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?

The danger of pushing yourself on the “good days” of 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