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Category Archives: ME/CFS
Black Dress Day 2014
How to accomplish a Black Dress* Day photo for severe ME if you have severe ME yourself and are 98% bedridden (may not be possible for all such folks): Use a morning’s energy to try on three dresses. Pick one … Continue reading
Posted in ME/CFS
Tagged awareness, Black Dress Day, Chimp, clothes, energy, fashion, makeup, Post-Exertional Malaise, shoes
28 Comments
The Body and My Body
If asked to guess what holiday is hardest for me, I don’t think Independence Day would top most people’s lists – but it is. Maybe when I say that, though, it comes into focus – really, you couldn’t design a … Continue reading
Posted in Life Before, ME/CFS
Tagged agnosticism, body strings, camp, campsickness, Christmas, Easter, faith, holidays, hugs, Independence Day, life before, music, St. George's
15 Comments
On One Decade In
Note: This entry is pretty much one big whine. When you’ve been sick for ten years, you get a coupon in the mail that entitles you to one 1800-word whine. I usually try to be at least somewhat upbeat and hopeful on … Continue reading
Posted in ME/CFS
Tagged crash, diagnosis, fresno, how it began, negative, sickiversary, whine
61 Comments
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
Good Days and Bad Days with ME/CFS
Inspired by Change4ME Au’s Good Day/Bad Day series, I thought I would take good day/bad day shots of my own. So here is a little look at each, although as with almost everything in ME/CFS, it’s more complicated than it … Continue reading
Posted in ME/CFS
Tagged Chimp, clothing, food poisoning, fried, good day/bad day, hair, makeup, Mom, photos, pressure sensitivity, sleep
18 Comments
Histamine Sensitivity and ME/CFS: A Plan of Attack
When I realized I was dealing with a histamine intolerance, and started looking around on the web about how to treat it, I felt totally bewildered and overwhelmed. There is an enormous amount of conflicting information, and I felt bad … Continue reading
Posted in ME/CFS
Tagged 23andMe, alpha lipoic acid, antihistamines, B12, Brazil nuts, Cheney, colostrum, DAO, doxepin, fennel, folapro, food, Gabapentin, gels, glutamate, glutathione, hawthorn, headache, Histame, histamine, ImmunoPro, LDN, magnesium, MAO, mirtazapine, olive oil, P5P, quercetin, Sam-e, Seroquel, sleep, turmeric, VIP, wormwood
24 Comments
Prandial Problems
I hated my mother’s bunny jello mold. She bought it before my brother or I were born, thinking that when she had kids, it would be fun to make them bunny-shaped jello. And it probably would have been, for most … Continue reading
Posted in Life Before, ME/CFS, Uncategorized
Tagged beef, bunny, chicken, childhood, Chimp, Dad, fish, food, histamine, jello, lamb, meat, Mom, sleep, vegetarianism, Wahls protocol
33 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
Inch by Inch
Even though my vocation for more than a dozen years was food, I’m a relative latecomer to vegetable gardening. It wasn’t something my parents did – I remember tomatoes a couple times, I think, and an excellent accidental watermelon one … Continue reading
Posted in ME/CFS
Tagged Chimp, daily routine, food, garden, herbs, house & home, vegetables
21 Comments
No Poster Girl 