Tag Archives: hope

Enough

I’ve been waiting until I felt well enough to post about my breast cancer surgery and recovery, about the treatment I will begin in January. I have words to say about experiencing the healthcare system as a person with cancer … Continue reading

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#MillionsMissing Book Review: A Still Life

Today is #MillionsMissing, a day to raise awareness and make people with ME visible to the world. As part of the event, people with ME are sharing their stories on social media but instead of sharing mine I’m going to … Continue reading

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Vaxxed Part Two

On Friday, I got my second dose of the Pfizer COVID-19 vaccine. The vaccine side effects were definitely more intense this time, but not unmanageable. I am so glad I was able to be vaccinated, and I am documenting the … Continue reading

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Vaxxed Part One

I got my first COVID-19 vaccine dose!! Since so many people with ME have legitimate concerns about the vaccines, I thought it would be helpful to share my own experience. Two weeks ago, I described the melee competition for vaccines … Continue reading

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Vaccine Melee

Here’s how I thought the process would work: The federal government would send a supply of vaccine to the state based on population demographics, and the state would send it out to the counties. The counties would control distribution to … Continue reading

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Vax Me

There is nothing I want more than to be vaccinated against COVID-19. I know many people in the chronic illness community, particularly people with ME and/or mast cell activation syndrome, are apprehensive about the COVID-19 vaccines. I feel the opposite: … Continue reading

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Darkness and Light

Today is the winter solstice, the longest night of the year. It’s a time of darkness in a hard winter, but also a time of light as the sun begins to return. Perhaps it is fitting that I face the … Continue reading

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Dr. Collins: Transcript of Remarks on April 5, 2019

Dr. Francis Collins addressed the Accelerating Research in ME/CFS meeting for ten minutes this morning. This is my best effort at a transcript of those comments. Thank you, Walter. I’m really glad to be able to be here for at … Continue reading

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“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

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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

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