I Miss… “I’ll pick you up in 5.” “I’ll be outside.” … I miss spontaneity. Work was my oxygen. Managing, Teamwork, Sharing, Training … Gone Manager, Vice President, President … Invisible. Committees, Meetings, Flights … Absent. … I miss work. I miss...
News & Blog
Oz Like
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 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”
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
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
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...
ME/CFS Had Other Plans
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 of Fibromyalgia
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
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...
Travel and Crash Considerations
Chapter 14: Traveling, while wonderful, can put you at risk for a crash. The increased energy expenditure physically, cognitively, and emotionally can use up your energy reserves more quickly than you would think. Here are some tips that may help you have less chance of crashing and use your energy more slowly.
I Miss…
I Miss… “I’ll pick you up in 5.” “I’ll be outside.” … I miss spontaneity. Work was my oxygen. Managing, Teamwork, Sharing, Training … Gone Manager, Vice President, President … Invisible. Committees, Meetings, Flights … Absent. … I miss work. I miss...
Oz Like
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 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”
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
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
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...
ME/CFS Had Other Plans
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 of Fibromyalgia
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
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...
Travel and Crash Considerations
Chapter 14: Traveling, while wonderful, can put you at risk for a crash. The increased energy expenditure physically, cognitively, and emotionally can use up your energy reserves more quickly than you would think. Here are some tips that may help you have less chance of crashing and use your energy more slowly.