Tag Archives: history

The Lace of Life

Posted on March 31, 2014 by Jocelyn

I was thinking, while we were in Asheville, about Dresden lace figurines. They’re porcelain figurines decorated with very realistic-looking lace, which is created by dipping cotton lace in porcelain and applying it to the figurine. The cloth burns off in … Continue reading →

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Hindsight

Posted on February 28, 2014 by Jocelyn

Living with a disease of unknown etiology is, let’s say, problematic. The lack of a well-defined cause stymies efforts toward a cure, and opens up a gaping void that gets filled, at best, with wide-ranging science, but more prosaically with … Continue reading →

Posted in Life Before, ME/CFS | Tagged , , , , , , , , , , , , , , , , , | 15 Comments

My Worst Year: Theda and Thomas and Me

Posted on September 29, 2013 by Jocelyn

Trigger warning for discussion of suicide. This summer, two well-known ME patients, Theda Myint and Thomas Hennessey, took their lives. I didn’t know either of them personally. Theda was well-known through her “Help Theda” facebook page, and was a very … Continue reading →

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Losing My Voice

Posted on March 28, 2013 by Jocelyn

A conversation at our house recently: “So when you think of things that the illness has cost me, things that were a big part of my identity, things that I loved to do, what’s the first thing that comes to … Continue reading →

Posted in Life Before, ME/CFS | Tagged , , , , , , , , | 22 Comments

Brain No Go So Good

Posted on February 24, 2013 by Jocelyn

“I’m writing an entry about my cognitive dysfunction, and I thought I’d ask you about whether there’s anything about it you notice. Wait, I asked you this last week, didn’t I?” “Yes. And I suppose that’s an anecdote in itself.” … Continue reading →

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Thin Thighs in 35 Years

Posted on July 1, 2011 by Jocelyn

I always wanted to have great legs. The picture at right is of my mom (center), her sisters, and me, in 1993. As you can see, my mom has great legs. Her three sisters have great legs. Their older brother … Continue reading →

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How It Began – Part II: Chicago

Posted on March 20, 2011 by Jocelyn

This is the second entry in my ME/CFS “origin story.” Here are Part I, Part III, and Part IV. The rest of the winter of 2003-4 passed uneventfully. Come spring, I was in Chicago for the Food Marketing Institute trade show for work … Continue reading →

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How it Began – Part I: The Flu Shot

Posted on March 19, 2011 by Jocelyn

This is the first entry in my ME/CFS “origin story.” Here are Part II,  Part III, and Part IV. You say you want to spend the winter in Firenze You’re so afraid to catch a dose of influenza You live your life like … Continue reading →

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The Boring Stuff: What is ME/CFS?

Posted on January 29, 2011 by Jocelyn

  We should probably have this straight before we go any further. What is ME/CFS? It’s a neuroimmune illness that affects pretty much all bodily systems. The acronym ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Let’s take that bit by … Continue reading →

Posted in Boring, ME/CFS | Tagged , , , | 24 Comments