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Tag Archives: living with
How You Doin’?
How are you in these quaran-times, my friends? My husband and I are doing everything possible to avoid infection because we know how scary COVID-19 can be. I have not left my house for anything except short walks in more … Continue reading →
Posted in Occupying
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Tagged coping, covid-19, crash, family, help, living with, pain, pandemic, PEM, quarantine, sars, suffering, volunteer
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5 Comments
A New Virus and ME
Updated: March 3, 2020 There is a new coronavirus circulating the globe, and there are quarantines of different sizes in multiple countries. This has led to great anxiety in financial markets, the media, and in communities. And you might be … Continue reading →
Posted in Occupying
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Tagged coping, covid-19, infections, influenza, living with, plan ahead, preparation, public health, sars, sick, virus
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36 Comments
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
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
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 →
Posted in Commentary, Occupying
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Tagged book, book review, Buddhism, coping, detachment, easy, family, gratitude, living with, mindfulness, occupy, pacing, pain, spiritual, stress, suffering, Toni Bernhard
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6 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
Safety In Isolation
The COVID-19 pandemic has expanded dramatically in the last two weeks. I won’t attempt to summarize everything that has happened; there’s too much. Instead, I have gathered some information that I hope will be helpful to people with ME and … Continue reading →