Tag Archives: living with

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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Puzzle Pieces

Posted on October 30, 2012 by Jennie Spotila

Let’s play a game. Imagine you have a large puzzle that makes an Impressionist picture of a colorful cottage-style garden. You can put it together as long as you have the picture on the box. First you assemble the lower … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 13 Comments

Mary Dimmock’s Comments to the FDA

Posted on October 25, 2012 by Jennie Spotila

Mary Dimmock presented a shortened version of these comments at the FDA meeting today on the Patient Focused Drug Development initiative. She has kindly given me permission to post her comments in full here. My name is Mary Dimmock and … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 3 Comments

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 →

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Testimony Tips

Posted on September 11, 2012 by Jennie Spotila

The CFS Advisory Committee meeting is less than a month away (October 3 and 4), and sign ups for public comment opened last night. At every CFSAC meeting, the public is given the opportunity to offer comments, but you have … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 4 Comments

Imperfect

Posted on September 7, 2012 by Jennie Spotila

I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , | 11 Comments

Adapting

Posted on August 31, 2012 by Jennie Spotila

I remember my mother and grandmother canning every year. My grandmother would put up jars of peach halves and applesauce, and my mother made strawberry jam. It always seemed like a silly waste of time to me, since you can … Continue reading →

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Preemptive Rest

Posted on August 28, 2012 by Jennie Spotila

I continue to wear my heart rate monitor every day, and generally listen to its alarm.  When it starts to sound, I sit down (although not instantaneously I will admit). And when I hit the part of the day where … Continue reading →

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New Life

Posted on August 15, 2012 by Jennie Spotila

I always wanted kids. When my husband and I got married, we thought three kids sounded like a good plan. Even though I got sick two months after we met, and was still sick when we married less than two … Continue reading →

Posted in Occupying | Tagged , , , , | 15 Comments