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Category Archives: Occupying
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
One Dance: Millions Missing 2018
I was never a talented dancer, but I loved it. I quit ballet lessons when I was in the 3rd grade because it was hard. I struggled to learn the simple choreography in school musical productions. I never learned to … Continue reading →
Posted in Advocacy, Occupying
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Tagged accountability, action, activism, anniversary, coping, family, funding, government, grants, grief, living with, loss, medical education, Millions Missing, NIH, occupy, politics, post-exertional malaise, priorities, speaking out, spending, suffering, treatment
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23 Comments
Expectations
Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading →
Posted in Advocacy, Commentary, Occupying
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Tagged accountability, action, activism, advocacy groups, anger, awards, awareness, community, coping, fierce, film, frustration, government, honesty, living with, media, Millions Missing, occupy, politics, press, publicity, represent, resist, self-care, speaking out, stigma, suffering, team work, triumph, truth, unrest, victory
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27 Comments
Personal Positives
Ah, 2017. You pretty much sucked. I managed to come up with a few good things to be grateful for at Thanksgiving, but overall you were a trash fire. Actually, a friend of mine said that my year escalated from … Continue reading →
Posted in Occupying
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Tagged funny, living with, personal, shining light, silly, silver lining
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9 Comments
Better Late Than Not At All
Last night, I was really struggling to come up with anything to be grateful for. I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I … Continue reading →
Posted in Occupying, Uncategorized
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Tagged balance, coping, crash, disability, family, gratitude, grief, living with, occupy, persistence, personal, strength, stress, suffering, truth
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16 Comments
More Thoughts on Suicide
Last week, Johanna Haban provided some important resources and information for people with ME who are overwhelmed or are contemplating suicide. This topic is complicated and very important to discuss, so Johanna and I spoke further about issues related to … Continue reading →
Posted in Occupying
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Tagged community, coping, crisis, death, dying, guest post, honesty, hope, living with, occupy, pain, psychosocial, resources, speaking out, stress, suffering, suicide, support
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9 Comments
Crisis and Suicide
The list of people with ME who have taken their own lives is too long. Fortunately, there is help available for anyone in crisis, and their loved ones. There are many issues to discuss about suicide and end of life, … Continue reading →
Posted in Occupying
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Tagged community, coping, crisis, death, dying, help, honesty, living with, occupy, pain, psychosocial, resources, speaking out, stress, suffering, suicide, support
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17 Comments
“Take Care Of Each Other”
“Take care of each other.” Those were the closing words in Anne Ortegren’s suicide letter. Anne’s death came as a shock to many of us, myself included. Anne was a friend and long-time supporter of my work. She made a … Continue reading →