Tag Archives: suffering

I Heard the News Today, Oh Boy

Posted on April 16, 2013 by Jennie Spotila

What is there to say about something like the Boston Marathon bombing? There is no sane way to reconcile the gruesome images, the suffering and destruction with our need to believe that we are safe. We are privileged enough in … Continue reading →

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Ring Theory

Posted on April 13, 2013 by Jennie Spotila

We’ve all had the experience of someone saying the wrong thing to us about our disease. “I hate that you always cancel at the last minute.” “You rest all day. Can’t you make dinner once in awhile?” “Work is killing … Continue reading →

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On the Shelf

Posted on February 7, 2013 by Jennie Spotila

I recently read Spillover by David Quammen, a book about human diseases that originate in animals. ME/CFS is not mentioned in the book, but a passage about the origin of HIV struck very close to home. Quammen describes how HIV … Continue reading →

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Best Laid Plans

Posted on January 15, 2013 by Jennie Spotila

This is not the day I planned to come back from my holiday hiatus, nor is this the post I planned for the beginning of a new year. But as they say: “The best laid plans of mice and men … Continue reading →

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Gratitude

Posted on November 20, 2012 by Jennie Spotila

We celebrate Thanksgiving in the United States on Thursday, and you may have seen the 30 days of gratitude meme on social media this month. I decided to share my gratitude in one post, and focus on aspects of my … Continue reading →

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In Concert

Posted on November 14, 2012 by Jennie Spotila

I went to a concert on Saturday night. I know, right? Given how sick I have been, and how much I have struggled after outings, a concert sounds pretty crazy. In fact, I haven’t been to a concert in many … Continue reading →

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Hurricane Drunk

Posted on November 6, 2012 by Jennie Spotila

No walls can keep me protected No sleep, nothing in between me and the rain And you can’t save me now I’m in the grip of a hurricane I’m gonna blow myself away (Florence + the Machine)   Hurricane Sandy … Continue reading →

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Blaze of Glory

Posted on October 16, 2012 by Jennie Spotila

Pacing is . . . actually, my descriptions of pacing generally involve expletives that are not appropriate for this blog, so we’ll stick with “Pacing is challenging.” One positive side effect of my pacing efforts, though, is that I am … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , | 13 Comments

Metrics

Posted on October 3, 2012 by Jennie Spotila

I delivered the following testimony via telephone to the CFS Advisory Committee on October 3, 2012. I would like to note something that Dr. Nancy Lee said today: “Nothing about me without me.” That’s what we’re asking for. FDA is … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 6 Comments

Can’t Drive 95

Posted on July 2, 2012 by Jennie Spotila

Almost as soon as I had decided to raise the limit on my heart rate monitor to 105 beats per minute, my physical therapy team smacked that idea down. They told me that one week with the monitor was not … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , | 26 Comments