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Category Archives: Occupying
I’ve Missed You
I’ve missed you, my lovelies! I dropped off the grid for awhile in hopes of making progress on my book. I wrote some words. I also saw some beautiful things, and visited beloved friends and family. My husband and I … Continue reading →
Posted in Occupying
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Tagged book, burnout, cello, coping, creativity, family, lessons, life, living with, love, nature, occupy, priorities, rest, strength, stress, writing
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41 Comments
#MillionsMissing 2019
We are the disappeared The vanished The millions missing Blink Snap your fingers Gone Do you miss us? Does anyone ask what happened to us? Does it cross your mind that we are still very much alive? We think of … Continue reading →
Posted in Advocacy, Occupying
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Tagged accountability, disability, living with, loss, Millions Missing, politics, protest, speaking out, suffering
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16 Comments
Drinking From A Fire Hose
News is coming at the ME community at a crazy pace right now. Each time I go online, there is another controversial article that requires a response. First there was the NPR chronic pain piece and ensuing debacle. Then came … Continue reading →
Posted in Advocacy, Occupying
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Tagged capacity, conference, control, coping, emotional, family, friends, frustration, limitations, Millions Missing, NIH, occupy, overwhelmed, pacing, persistence, post-exertional malaise, priorities, researchers, self-care, stress, survival
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16 Comments
The Best Holiday Ever
Getting a puppy was not in the plan. My husband and I already had a dog (Fargo) and a cat (Lucas). The plan was for my parents to pick out a dog, and I just went along to help since … Continue reading →
Posted in Occupying
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Tagged adapting, coping, disability, dog, doggo, family, grief, joy, life, living with, loss, love, personal, pets, pupper, shining light, strength
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20 Comments
Educating Doctors
The Philadelphia Inquirer recently published an article I wrote about educating doctors about ME. The article can be read here. This week, the Philadelphia County Medical Society is hosting a screening of the film Unrest, followed by a panel discussion … Continue reading →
Posted in Advocacy, Occupying
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Tagged action, activism, advocacy, awareness, coping, diagnosis, doctors, healthcare, IOM, living with, medical education, occupy, represent, resources, respect, speaking out, unrest
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5 Comments
“It is no bad thing to celebrate a simple life.”
It’s been twenty-four years. Twenty-four years since the morning I woke up with a sore throat, went to work, and got so sick I could barely walk home. Twenty-four years since I became incurable. And this year, I hardly noticed. … Continue reading →
Posted in Occupying
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Tagged action, balance, coping, family, friends, grief, living with, occupy, persistence, personal, sickaversary, strength, stress, suffering, triumph, victory
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44 Comments
Taking Care of Your Self
Self-care is one of those internet buzzwords that people casually throw around, as if a coloring book or a kitty will solve all your problems. I’m not knocking coloring books and kitties, but generally I think that kind of advice … Continue reading →
Posted in Occupying
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Tagged action, capacity, control, coping, creativity, emotonal, exercise, family, friends, frustration, funny, laugh, limitations, living with, love, music, occupy, pacing, pain, persistence, personal, self-care, spiritual, stress, suffering, survival
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22 Comments
In Healthcare, Be Squeaky
As the saying goes, the squeaky wheel gets the grease. This is particularly true in healthcare, where you are dealing with big systems that don’t always talk to each other. Today, I will tell you the story of how I … Continue reading →
Posted in Advocacy, Occupying
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Tagged accountability, action, doctors, Health Activist, health care, healthcare, living with, occupy, records, speaking out
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5 Comments
The NIH Pilot Program: What We Can Do
As I discussed in Part One of the NIH Pilot Program, NIH thinks that the three (and only three) Collaborative Research Centers are seeds to generate interest in ME research, and will wait for more research applications to come in … Continue reading →
Posted in Advocacy, Occupying
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Tagged accountability, action, activism, awareness, blame, CFSAC, funding, government, grants, living with, Millions Missing, NIH, occupy, politics, priorities, recommendations, researchers, RFA, speaking out, suffering, testimony, treatment
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18 Comments
How To Be Sick . . . Again!
Toni Bernhard has just published a second edition of her classic How To Be Sick, or as I like to call it: The Book That Will Make You A Better Human. I have relied on How To Be Sick since … Continue reading →