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Tag Archives: history
The Lace of Life
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
Posted in ME/CFS
Tagged Asheville, bath, bedridden, books, Chimp, Christmas, constraints, crash, dancing, dining out, Dresden lace, exercise, family, fashion, figurines, food, fresno, history, love, makeup, Mom, music, nature, outdoors, parties, Post-Exertional Malaise, pressure sensitivity, travel, vegetarianism, walking, wildflowers
17 Comments
Hindsight
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 acne, ADD, ankylosing spondylitis, antibiotics, anxiety, childhood, Chimp, cognitive dysfunction, crash, Dad, diagnosis, disability, etiology, history, PCOS, regret, vertigo, work
15 Comments
My Worst Year: Theda and Thomas and Me
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
Posted in ME/CFS
Tagged bedridden, blood, cancer, charity air ambulance, Cheney, Chimp, crash, HGH, history, Mom, pheochromocytoma, side effects, sleep, suicide, Xyrem
65 Comments
Losing My Voice
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 childhood, Chimp, history, Mom, music, performance, singing, stress, symptoms
22 Comments
Brain No Go So Good
“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
Thin Thighs in 35 Years
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
How It Began – Part II: Chicago
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
How it Began – Part I: The Flu Shot
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
The Boring Stuff: What is ME/CFS?
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