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Category Archives: Occupying
My “Summer Vacation”
What I’ve done on my “summer vacation” has not been fun. I’ve had a rough couple of months. Non-ME health issues have gobbled up most of my capacity, and I’m still feeling the repercussions. I’m not ready to talk about … Continue reading →
Posted in Occupying
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Tagged coping, diagnosis, doctorss, essentials, health care, help, living with, occupy, pacing, preventive, priorities, self-care, stress, suffering, support
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42 Comments
Funding Unrest
Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is … Continue reading →
Posted in Advocacy, Occupying
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Tagged action, activism, advocacy, film, fund raising, Kickstarter, Millions Missing, NIH, occupy, speaking out, suffering, unrest
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11 Comments
Best In Show Blog
I am excited to announce that for the third time, Occupy ME has been nominated for the Best In Show Blog award in the WEGO Health Awards! Now we enter the part of the process where you can influence the … Continue reading →
Posted in Occupying
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Tagged action, awards, living with, nominations, occupy, speaking out, WEGO
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15 Comments
Guest Post: Sickaversary
My friend, Jenny R, wrote these profound words about her sickaversary. 10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it: I want to write something incredibly profound and moving … Continue reading →
Posted in Occupying
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Tagged coping, grief, living with, loss, occupy, sickaversary, speaking out, stress, suffering
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6 Comments
Book Review: Growing Gills
I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but … Continue reading →
Posted in Commentary, Occupying
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Tagged action, book review, coping, creativity, disability, living with, pacing, time, writing
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12 Comments
Missing, Not Marching
I should be marching right now. I mean, I had my plans all worked out. #MillionsMissing tshirt? Check. Wheelchair wheels freshly pumped up? Check. Water and food? Check. Ride to March? Check. Kick ass awesome sign made by my husband? … Continue reading →
Posted in Advocacy, Occupying
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Tagged action, choices, funding, government, grants, living with, march, March for Science, Millions Missing, NIH, occupy, pain, politics, priorities, protest, reality, researchers, resist, speaking out, suffering
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31 Comments
Help My Sign!
I am suuuppppperrrrr excited for the March for Science this Saturday, April 22nd. I am doing everything humanly possible to attend. I’ve got extra rest scheduled this week, and a backup ride the day of the March (in case ride … Continue reading →
Posted in Advocacy, Occupying
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Tagged action, funding, government, NIH, occupy, politics, protest, speaking out
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62 Comments
A “Standard” Patient
Today, Joe Landson shares his experience as a standard, real patient. I work occasionally as a standardized patient, though there is not much standard about me. Standardized patients are actors; we play out a script of symptoms for health care … Continue reading →
Posted in Commentary, Occupying
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Tagged guest post, medical education, pain, PTSD, roles, simulated, standardized, training, work
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16 Comments
Resist. Persist.
Am I the only person who feels like she is in a leaky boat, surrounded by sharks? Pretty much every time I look at Facebook, Twitter or the news, I find another leak in the boat. And when I look … Continue reading →
Posted in Advocacy, Occupying
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Tagged action, art, cello, living with, music, occupy, pacing, politics, priorities, reading, speaking out, stories, suffering
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19 Comments
Unrest: Movie Review
Spoiler alert: This review discusses some specific scenes from Unrest. Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back … Continue reading →