Tag Archives: living with

Saying No

Posted on December 4, 2015 by Jennie Spotila

How To Live Well with Chronic Pain and Illness is Toni Bernhard’s latest book. I’ve reviewed Toni’s previous books (here, here, and here), but over the course of years, Toni has become one of my most beloved friends. So while … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , | 16 Comments

A Year of Thanks

Posted on November 24, 2015 by Jennie Spotila

This year has been hard, y’all. HARD. Sometimes I think that my Mom’s death took a scoop of my soul along with her. And then just over six months later, my husband (my caregiver, my best friend, my everything) had … Continue reading →

Posted in Occupying | Tagged , , , , , | 8 Comments

21

Posted on October 9, 2015 by Jennie Spotila

October 6, 2015 was my 21st “sickaversary.” I know the date because the onset of ME/CFS in my case was so sudden and dramatic. Not a single doctor told me that I could be sick for years. Not a single … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , | 49 Comments

A Miracle, and a Break

Posted on August 28, 2015 by Jennie Spotila

This year has been the most difficult of my life, starting with my Mom’s passing in January. Losing her was just the first in a cascade of bad news, and I made the decision to stop maintaining that laundry list … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , | 25 Comments

CFSAC Testimony, Jennie Spotila, August 18, 2015

Posted on August 17, 2015 by Jennie Spotila

Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking … Continue reading →

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 28 Comments

No CDC Funding for CFS?

Posted on August 4, 2015 by Jennie Spotila

ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 225 Comments

Wheelchair – HELP!

Posted on July 6, 2015 by Jennie Spotila

I need a new wheelchair, and I need your help! I have used a manual chair for many years, relying on friends and family to push me around. But the chair gets caught in pavement cracks, has trouble going over … Continue reading →

Posted in Occupying | Tagged , , , , , | 19 Comments

Alone in the Woods

Posted on April 13, 2015 by Jennie Spotila

I’m happy to share this guest post from Joe Landson. Man, can I relate to this! Each of us patients has that one dear relative, friend, or acquaintance – the one who tells us, repeatedly, that we can do anything … Continue reading →

Posted in Occupying | Tagged , , , , , | 27 Comments

Grief: Words Fail

Posted on April 8, 2015 by Jennie Spotila

There are a lot of things to say about grief, and I had a much longer post planned for today. But words fail me on this. And as a person whose only outlet is words (as opposed to work, socializing, … Continue reading →

Posted in Occupying | Tagged , , , , | 21 Comments

Case Definition Bingo

Posted on March 23, 2015 by Jennie Spotila

Our disease is plagued by too many case definitions, with the Institute of Medicine’s Systemic Exertion Intolerance Disease (SEID) being the most recent. Our federal agencies are thus far continuing the agnostic position of accepting whatever case definitions are proposed … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 40 Comments