Tag Archives: living with

Data Queen

Posted on July 10, 2013 by Jennie Spotila

One of the biggest weapons I have in the fight against ME/CFS is data. I keep track of my activities, medications, sleep, and symptoms daily, and over time that data can be very powerful. I’ve blogged extensively about wearing a … Continue reading →

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Heart Rate and Beta Blockers

Posted on July 2, 2013 by Jennie Spotila

Beta blockers are routinely prescribed to ME/CFS patients who have orthostatic intolerance. But because of the medication’s effects on heart rate, it can be challenging to incorporate heart rate monitoring into the picture. After some uncertainty, I have managed to … Continue reading →

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Meeting METS

Posted on June 21, 2013 by Jennie Spotila

It has been more than a year since I had a two-day exercise test. My exercise test report was full of all kinds of jargon, and over the last year I have been trying to decode and apply it to … Continue reading →

Posted in Occupying | Tagged , , , , , , , | 6 Comments

Sometimes It’s One of Those Times

Posted on June 11, 2013 by Jennie Spotila

Sometimes, life just vomits in your lap. One thing after another goes wrong, and you feel like you’re juggling roaring chainsaws while pedaling a unicycle. Or maybe that’s just me. 2013 has been challenging, to say the least. I’m fully … Continue reading →

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

I Thank You

Posted on May 2, 2013 by Jennie Spotila

When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , | 5 Comments

What a Crash Looks Like

Posted on April 29, 2013 by Jennie Spotila

On the suggestion of my friend Claudia, I recorded a video of myself on the third day after the FDA Drug Development Workshop on ME and CFS. I had to swallow my pride to do this. Even some members of … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , | 31 Comments

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 →

Posted in Commentary | Tagged , , , , | 11 Comments

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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Tell It To The FDA

Posted on March 15, 2013 by Jennie Spotila

The much anticipated FDA meeting on drug development for ME/CFS on April 25-26th is fast approaching, and your participation is needed! There is a great deal of time set aside for patient input, but the process will work very differently … Continue reading →

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

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 →

Posted in Commentary, Occupying | Tagged , , , , , , , , | 4 Comments