Tag Archives: living with

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 →

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

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 →

Posted in Occupying | Tagged , , , , , , , , , , | 3 Comments

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 →

Posted in Occupying | Tagged , , , , , , , , | 12 Comments

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

Spontaneity

Posted on August 2, 2012 by Jennie Spotila

I’ve always been a planner, and living with CFS wreaks havoc on plans. I never know if I’ll be able to follow through on plans, big or small. I missed my cousin’s high school graduation, and at least three weddings … Continue reading →

Posted in Occupying | Tagged , , , , , , , , | 2 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

CFSAC Testimony of Matthew Lazell-Fairman

Posted on June 21, 2012 by Jennie Spotila

Matthew Lazell-Fairman delivered these comments to the CFS Advisory Committee at its June 14, 2012 meeting. He has kindly given me permission to publish them here. To those responsible for health policy on ME/CFS, I need you to listen and … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , | 2 Comments