Sunday, February 28, 2010


This is the part of my blogging journey when I step back and think, “Is this what I really wanted?” So far I haven’t written about anything I’d been planning on writing about. Ideally, I wanted each of my entries to be like a mini Malcolm Gladwell essay; revealing startling, counterintuitive ideas about illness, the medical community, and ultimately the very world we live in.

But my capacity for research is still very limited, even when it comes to my own journals and notes. So for now I’m going to have to stick with the stream-of-consciousness style. I feel like I did back in my high school, where I suddenly found that my ability to direct my mind to write essays about American confessional poetry or Gothic fiction had vanished, but I was still staying up all night writing personal essays, posting them online, and then sneaking up to the library during lunch to check the comments on the internet.

To an outsider it may have looked like a classic case of lack of discipline or loss of motivation, and I wondered about that myself, but I didn’t feel any change like that in my personality. I still wanted my teachers to like me, I still wanted to be a good student, in fact I still thought I
was a good student, when my English teacher asked when I was turning in my already-three-days-late ten-page-essay and I said with a shrug, “You know I’ve been trying...but I just can’t do it.”

There had been a huge change in my brain, and I was still at a loss to understand it. It’s hard to look at your own flailing mind when all you have to look at it with is your own flailing mind. Susan Griffin, who, I believe, was already a Pulitzer prize nominated writer when she contracted CFS, explains it best:

Clearly, some aspects of my ability to think were affected more than others. What I found was that much of the time I could think lucidly and even creatively if I let my mind wander wherever it wanted. But questions were difficult to answer: It was as if the memory and knowledge existed, but my mind could not locate them. I experienced the attempt to do so as very tiring, so much so that once when a visiting friend kept asking questions, I burst into tears from the effort to answer her.
from What Her Body Thought

But more on that another time. For now I’m letting my mind wander while I take dictation.

I drink your milkshake

I never did have my birthday shake. My sore throat turned into a full blown cold, my first one in at least three years. I just did not feel like drinking a shake while sick, or eating anything. I lost back what little weight I gained and then some. The almond milk I made for the shake was only good for three days, so on the third day I had Jim drink it. I did take one sip though and it was delicious. I think using real vanilla bean instead of vanilla extract makes a huge difference. It tasted just like the one at Cafe Gratitude. He used one date, by the way. I still have the ice cream in the freezer for another, just have to make the milk when I’m feeling up to it. Soon.


My cold lasted a week and is over for the most part. Two days of fever, lots of coughing and sniffling. I just want my appetite back now. If I can’t gain some weight fast I will have to buy a dress for my cousin’s wedding from the children’s department.


My digestion isn’t great, but I still haven’t been getting nauseous. My acupuncturist wants me to do another round of “tummy tonics” (she won’t tell me what herbs are in them) but my gastroenterologist doesn’t want me taking any herbs while I’m on the antibiotic. (5 more days to go on that) So my plan is to start the tummy tonic again on Sunday and hope it will work as well as it did last time.

There will be Blood work

Never did have that phone consult with Dr. Cheney. I sent in an e-mail to schedule it but I don’t know if it’s necessary anymore. I got my blood work in the mail and it is mostly normal. My BUN was low, a 4 when the range is 8-22. I looked it up and a elevated BUN can mean kidney disease but a low one just indicates malnutrition. No surprise there.

He put a check by my total protein, which was normal. Not sure what that means. And finally my sed-rate is elevated, 25, which indicates inflammation, again, not surprised.

I was surprised to see my white count is normal, 6.6, usually it’s in the 3s or 4s. A good sign for my immune system? Red count also normal but on the low side: 4.97.

The Dog Delusion

My goal in life has been to get myself healthy enough to go back to college. Lately I’ve been rethinking that. My new goal is to get myself well enough so that I can own a dog. Every time I see a dog these days my heart melts a little. My mom has a dog, Dougal, so I get so see him when I go home, but that’s not very often.

Last year I actually deluded myself into thinking I could take care of a dog. “Dogs are therapeutic!” This was when I still thought long walks would be healthy for me, and a dog would force me to take them. What a joy it would be, the two of us walking around the neighborhood together while I got healthier and healthier. I spent weeks going to kennels and rescues, and browsing through pictures at I bought some general dog care books, as well as one by The Dog Whisperer and Animals Make Us Human by Temple Grandin.

And then I met Joey at the Bill Foundation, who I renamed Bingley. Look how cute! He was the greatest dog and the best fetcher ever. We had four blissful/stressful days together. On our first day I took him for a one hour walk, it was initially only going to be 20 minutes, but The Dog Whisperer said your first walk should be at least an hour, and I felt up to it, so we pushed on. The next day though post-exertional-malaise hit me like never before and I spent the next three days feeling poisoned in every part of my body. But still, I enjoyed taking Bingley to the park, sitting on a bench while he fetched tennis balls, and giving him a bath with extra-whitening poodle shampoo.

He followed me everywhere and slept in bed with me at night, never getting up until I got up. He was very patient and respectful. When, after four days, my landlord e-mailed and said he had to go because the neighbors were complaining about the barking, I cried, out of sadness and relief.

I took him back to the adoption foundation. I checked his profile every day after that and saw he was adopted rather quickly. (Again, no surprise.) Now every time I see someone walking a white poodle I wonder if it could be him, and what his name is now.


  1. I drank it up!

    That dog is such a Bingley. I'd completely forgotten about "Joey." I picture his new owners trying to rename him and being met with barks of "Now, see here! My name is Bingley, dammit! B-I-N-G-L-E-Y. And any claims to the contrary will be met with naught but an icy stare."

    "Oh, listen to him! He must really like the name MAX. Don't cha, boy? Don't cha, Max?"

    "What fresh hell...?"

  2. I have always made my health goal to be "I hope I get healthy enough to own a dog someday" - so I am sooooooo with you on this one :)

  3. I was about to say how sorry I was about your dog and how I relate to your feelings about not being "productive" enough and beating yourself up over it... but then I read Jim's comment and now I can't remember half of it. I just love how the Bingley in Jim's head sounds like the puppy version of Stewie from Family Guy. "What the deuce??"

    I'd really like to read "What her body thought" now; I definitely feel a change in my brain, and it's maybe even more disturbing than the change in my physical health. I love how you hit the nail on the head: "It’s hard to look at your own flailing mind when all you have to look at it with is your own flailing mind."

    Finally, I'm a cat person, but my goal has always been to be enough to adopt my own kitty. I live at home right now (again, the sickness), so I do get to enjoy my family's kitties.

    Good post, hon. You've given me a lot to ponder and your friend Jim gave me a good laugh. Thanks for da gifts. :)

  4. Does blogspot not let you respond to comments individually? Wow! Maybe I should have done this blog on livejournal...

    Well thank you all for your comments and Robyn, I'm only through the first section but I would already highly recommend What Her Body Thought to anyone with CFS or who wants to understand it. It's really good.