Resetting the mind

I have never been one for New Year’s resolutions, but after what was arguably one of the hardest years, I decided it was time to try something different in 2019. The stress and turmoil of the past year left me reacting to life, rather than being deliberate about it. My days swirled around chaotically, with … Continue reading Resetting the mind

Decoding the 2-day CPET

This blog was published by Health Rising and ProHealth. Thanks for stopping by! https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/ https://www.prohealth.com/me-cfs/library/decoding-2-day-cardiopulmonary-exercise-test-cpet-chronic-fatigue-syndrome-cfs-89552

Traveling with M.E. (to the South Bay)

So, you have been on the waiting list for the ME/CFS Clinic at Stanford forever and finally your number has come up! The tips below come from my personal experience traveling solo to the South Bay with ME. The South Bay refers to the region around the southern end of San Francisco Bay, and includes … Continue reading Traveling with M.E. (to the South Bay)

No Access

As I waited a bit anxiously, wondering if the coming squall would pass us by at the May Erlewine concert, I suddenly realized that I belong to no place. Even here among the white pines, cedars, and sugar maples. Such existential moments usually would not unnerve me. Here, in northern Michigan, in Leelanau County, the … Continue reading No Access

When gnawing fatigue is cause for greater concern

Everyone feels run down from time to time. Stress, poor sleep, unhealthy eating habits, and lack of exercise are staples for many women juggling the complexities of career and family. But when might gnawing fatigue be cause for greater concern? Many women may be asking this same question after seeing the Oscar-nominated documentary Unrest, a … Continue reading When gnawing fatigue is cause for greater concern

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

When medicine fails a child

  "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

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?

Blue rose days

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

Losing a beloved career to a chronic illness

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