Oz Like Joints as stiff and creaky as the Tin Man… When, oh when will they find a lubricant that works for them… Brain as foggy as the Scarecrow… Can’t concentrate, can’t comprehend, can’t remember, will this fog lift someday, somehow… Fear as deep as the Cowardly...
Oh How I Miss Reading Oh how I miss reading, The ability to get lost in a book, To be swept away by the story, To hear the characters in my head! I’ve been robbed of the ability to concentrate, Absorb meaning, Follow the story. Eyes so tired, Eyes...
I wish I could say, “yes,” … that I can go with you to the concert. … that I can figure out the grocery list, go to the store, and unpack when I get home. … that I can walk with you around our neighborhood. … that I will vacuum the house and do the laundry and cook...
Watching the World I open the door from my room I watch the world People in school for degrees People on sunny sandy beaches People winning awards People on trips with friends I love watching everything I dream of joining in I wonder about being part I close...
HOPE I hope you never wake up one day and realize your illness will never get better I hope you are never told you’re being denied care in the form of a letter I hope that you never feel anxiety to see doctors out of fear I hope that you never have to...
I was proud to be a civil servant who worked on the remediation of hazardous waste sites for the US EPA. I was 20 years in and figured I had 20 more to go. But at 42 years of age, ME had other plans. After a day of cross country skiing, ignoring what I now know were...
Reflections on Fibromyalgia This is the owl I got at the children's hospital gift shop when I received my Fibromyalgia diagnosis at age eleven, almost two decades ago. I am now thirty years old and finishing a degree in Disability Studies, and my life with chronic...
The Monster If I had to describe my chronic illness as a creature, it would be a grotesque, twitchy hare with a hyena head and spider legs. It's the stuff of nightmares. Can you imagine it? A blind, lifeless eye staring back at me while venomous drool drips from...
The fatigue began at the top of my head and rolled down my body, as if I’d been standing under a cold shower. I felt flushed, chilled, achy, and unsteady on my feet. I had to lean against the display case of the cupcake shop, hoping my son wouldn’t notice. We were on...
I felt like a normal mom. I had three girls, so I was busy, but I still liked to hike, bike, run and go for walks. I had finished my bachelor’s degree and considered getting a master’s when my youngest started school. I kept up my teaching certificate in the meantime....
Before I got ME/CFS I was a women's health nurse practitioner working in a busy practice. I had spent years of education preparing for this dream job: two bachelor's degrees in biology and nursing and two master's degrees in philosophy of science and nursing. I loved...
I was only 11 years old when I got ME/CFS and my life changed forever. Before ME, I was a normal, happy kid. I loved going to school and got straight A’s. I was that crazy kid who couldn’t wait for school to restart after a break. I also loved music. I played the...
Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career - the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.