Thankful Like a Fairy

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It’s that time of year here in the United States when little construction paper turkeys appear on fridges and people suddenly remember that pumpkin is edible. Thanksgiving often feels more like a breather in between the heavier loads of presentations and finals, usually with a side of grading. It’s the end of the term, and everyone is feeling a crunch that has little to do with frosty grass or fallen leaves underfoot. Periodically I see little flyers scattered around, all variations on themes about thankfulness, gratitude, and the like. I usually read them with some trepidation, my mind clouded by rubrics and inner debates about the ontology of musical meaning. Most often I feel that I don’t measure up on the thankfulness scale at the moment, and then all I’ll be is annoyed and guilty before my mind scutters back to the meta-musical-microcosm.

That’s because, I’ve concluded, I’m thankful like a fairy.

“Tink was not all bad: or, rather, she was all bad just now, but, on the other hand, sometimes she was all good. Fairies have to be one thing or the other, because being so small they unfortunately have room for one feeling only at a time. They are, however, allowed to change, only it must be a complete change.”
 ~ J. M. Barrie

When I’m thankful, it is an overwhelming flood of gratitude. One the flip side, when I am not thankful, I’m sometimes every dark emotion there is. It isn’t simply sniveling ingratitude, it can be an epic funk and a devaluation of my very existence. That is ungratefulness of the highest order.

However, fairies are allowed to change… and the musician in me insists that practice makes perfect. So here are some of the random wonky things a fairy brain is thankful for on a Monday:

  • Lyft! I’m running late, and for less than a day’s worth of university garage parking a wonderful clean car pulls up to my apartment door and then drops me off at the door to my building.
  • The fish faces my students, locked out of their classroom on the top floor, are making against the glass at me as I walk into the atrium 3 stories below.
  • The fact that the sound equipment and TV in my classroom worked … on the first try!
  • My butt. Sorry folks! Chronic illness can take unexpected tolls on weight, and in my case I lost a lot over the past couple years. If you have a job that requires a lot of sitting then you can imagine that not having much of one can be a little painful. Thanks to the discovery of King Size Fritos, bean dip, and allergen-free chocolate cookies, I’m working my way back to normal weight. It is great.
  • Trader Joe’s fish sticks and Simple Truth potato puffs (aka tater tots). Yes. It’s more borderline junk food, and I can eat it without having a reaction. I love being able to eat without an allergic reaction.
  • My advisor. We’ve had a bit of a chat about my medical conditions, finishing in a brief “how to administer epi” course. When I told him this morning that I was still struggling with the aftereffects of a recent ER-level bad reaction, I was let out of a weekly meeting and got to go home early and rest. I don’t know how this will play out, but today I am very grateful for that understanding.
  • The lighted brick path that sweeps past the hotel, lined with lights and ending in an impressive skyline backlit by a sunset that looks good enough to eat. OK. Maybe I was hungry today…?
  • The long conversation my busy exhausted mom gave to me so I could walk around this evening, enjoying the sunset, feeling safe and not so alone. Truly a marvelous gift. 🙂

 

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Chocolate Cupcakes O’ Bliss

One of the things that I’ve missed since starting to struggle with food triggers is dessert. Sweet bliss, that sugary note that says that now, indeed, dinner is done.

So far, I’ve found sorbet, almond milk ice cream, Theo chocolate bars, raspberry chocolate bars from Trader Joe’s, and Enjoy Life chocolate. I can handle a bit of chocolate at a time, although not nearly as much as I’d like to eat (a common enough problem among all humans, or so I’ve been informed. 🙂 ) A wonderful local bakery makes a variety of allergen-free cupcakes, but a lot of them still use coconut products (a trigger for me, yipes!). And I LOVE cupcakes.

Enter brave friend with a kitchen and an adventurous spirit. I’ve tested out more food responses in her kitchen than I have almost anywhere else. It’s been amazing.

“1/3 cup oil!” I call. “On the shelves next to the stove,” she answered. I fished out a big container of vegetable oil and hesitated. “Vegetable oil” is one of the most deceptive phrases in cooking to me, rating right up there with “natural flavors.”

“Vegetable oil… let’s see, what vegetables you use… ah, soy.” We both paused. A few days ago I’d tried some hummus with soybean oil in it. Supposedly no one reacts to soybean oil. Those researchers had apparently never met me. As reactions go it was pretty tame – bit of a rash, a few mouth blisters – and Benadryl took care of it, no worries. But I wasn’t in a hurry to repeat the experience. Neither was she. She grinned. “There’s olive oil there too.”

We subbed out the canola for olive oil. Then because olive oil and honey go together in cooking to me, I suggested we use some of that. We chunked in about 1/3 of a cup of some local honey. She thought that we might need to disguise those flavors with something else, so she found a container of chocolate powder.

“Does this work?” I skimmed the label. “Yep!” I can handle a bit of chocolate powder.

We threw in a lot of chocolate powder. Then I got to lick the batter. Pure delight. It tasted sweet, it tasted like batter, it tasted like chocolate … at least stage one passed for dessert!

We made such massive cupcakes they overflowed the paper cups and had to be pried out of the tin with a knife. They were moist, delicious, and apparently a hit with more than just me. When I was leaving, her husband insisted that they keep one. 🙂

The base recipe was provided Jamie at milkallergymom.com: https://milkallergymom.com/dairy-free-egg-free-vanilla-cake/. For our chocolate variety, substitute olive oil for canola, add 1/3 cup of honey, and put in several tablespoons of chocolate powder.

Back to School

I was of two minds going back to school. The first was like Peter Pan and his shadow.

“If he thought at all, but I don’t believe he ever thought, it was that he and his shadow, when brought near each other, would join like drops of water, and when they did not he was appalled.”

I would slip back into the rhythm of school, with its percussion section of tests and deadlines rattling away, and the music of learning would enchant me as it always did. My department would once again feel like home – a sort of chaotic, dysfunctional home at times perhaps, but home nevertheless. Oh, there might be a few changes, but once I was back into the swing of teaching and studying and tutoring, I would be back.

I tried not to let the other bit of my mind have too much air time, because it wasn’t particularly concerned with “thinking” either. Instead that bit of my brain tried to shake and worry the details of my return like a puppy with a rag – should I tell my students? What about my bosses? How was I going to manage to lecture when I couldn’t always stand? How was I going to keep medications close by and manage to take them at the right time when I was running back and forth to jobs and class and meetings? When would I get a chance to rest? Would there be someplace private at school I could rest, if I had to?

Still, most of those thoughts, such as they were, were about details. Minutiae. I’d get it figured out in the first few weeks, I told myself. There was no reason to think that I and school wouldn’t eventually join up like two drops of water.

Instead, I sank like a stone. It wasn’t two drops of water, seamlessly blending together. It was like being underwater and staring at pool toys on the surface, all bright colors and cheerfulness bobbing away out of arm’s reach. The other students all have lives, problems, and dreams, the same as I do, but college convention dictates you discuss the trivial.

“Why didn’t they give me a fork with the salad?” “I don’t think the professor will like my title.” “I have to prepare for a meeting with my advisor! I’m so nervous!” “It’s such a long walk over to the big library, so maybe I’ll order the book and have it delivered…”

It wasn’t that I didn’t care about those people, and by extension (some of) their problems. Especially since I knew a couple of my fellow students well enough to know that actually there were other bigger, much more terrible things going on in their lives, too. But at school that wasn’t part of the picture, and everything became just so terribly remote. I floated in the darkness below the flotsam of normal life. Sometimes it was peaceful, realizing that I didn’t really care that much anymore what a professor thought of my paper title, or if my notes were perfectly in order before a meeting. Other times I felt like I was drowning, trapped below the surface and riding much colder currents of terror and pain while the top at least looked comparatively placid. While the others wondered about forks for their lunch, I wondered if I’d go into anaphylaxis as my skin began to burn and my throat itch. They thought about the inconvenience of a long walk to the library, and I thought about joint hypermobility and if I’d be able to walk at all. I felt fresh out of trivial.

The adrenaline-fueled race to grab knowledge, keeping so busy that I danced on the edge of losing it – well, that joy feels a bit more fleeting and muted. The joy of being able to keep breathing or to eat without being sick feels much more immediate in comparison. When it’s not my body that’s pulling me apart, it’s my mind. The research I was doing before would enrich human lives, reclaim a lost part of history, and help explain how a part of society functioned. The medical research I do now, wading through dozens of scholarly articles while simultaneously playing catch-up from an education designed to prepare me for the performing arts instead of science, might save my life tomorrow, or someone else’s in a week. They’re both exciting in their own way, and I love both. And right now, my body still doesn’t have the capability to allow me to thoroughly dive into either.

I know because I tried to do both, sort of … to be the old graduate student me. I told myself that if I wanted to slip back into this world, I just needed to do what I did before. Fake it until you make it, right? I faked it for a week. I didn’t know that old habits would be so destructive, though, perhaps because they weren’t before. I went into anaphylaxis, fought off a cold, got physically ill, locked myself out of my apartment and my car, and slept for 12 hours straight when I made it to the weekend. I still missed 3 deadlines although they weren’t critical. Clearly I still have much to learn at college … and it looks like one of the biggest lessons of the term is going to be how to listen to my body but still keep my mind alive and my program’s requirements met.


 

 

 

Traveling with POTS, V

Two words. Checked bags.

Except for medications and whatnot, of course. Which, let’s face it, probably fill your carry-on and/or personal item anyway. Spring for a snazzy carry-on to make the fact that you’re carrying enough medications for an old folk’s home more palatable, and consign the heavy stuff to the tender loving care of the airline.

 

Eating on Vacation, part 2

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Victory came in the form of a golden brown oblong. Bread. Real bread.

Tests results and a trial elimination diet showed that gluten wasn’t my problem. However, milk and eggs provoked all kinds of symptoms. I was told that food intolerances could wax and wane. I also found out that dairy and uncoooked egg whites could be triggers for histamine release. We decided it would be best for me to avoid dairy and eggs for several more months. The only bread I could find quickly while I was at school was Energ-G’s line of allergy-friendly breads. Tapioca bread quickly became a favorite, especially toasted with almond butter.

Problem: on vacation, there wasn’t any Ener-G bread in any of the grocery stores in my rather more country hometown.

In flew my mom in a super-hero apron cape dusted with flour. She whipped up a batch of French bread without eggs or milk.

The recipe below calls for 1 tablespoon of butter. But you can substitute in a safe oil/ fat. We did one a version with olive oil and double the whole wheat. It was a little denser and more chewy than your typical French bread, but very tasty.  It bakes at a high temp and we also tried a version with all the butter, and thankfully it didn’t seem to trigger anything. This site has a lot of substitutions for baking that I’ve used before: https://delishably.com/dairy/Substitutes-for-Butter-in-Baking.

FRENCH BREAD

2 packages active dry yeast

2 1/2 cups warm water (105°-115° F)

1 tablespoon salt

1 tablespoon butter or margarine, melted*

7 cups all-purpose flour

2 tablespoons cornmeal

1 egg white and 1 tablespoon cold water, for egg wash*

Instructions: Dissolve yeast in warm water in warmed mixing bowl. Add salt, butter substitute, and flour. Attach bowl and dough hook to mixer, and mix/ knead on medium-low speed for about 3 minutes. Dough will be sticky.

Place dough in a greased bowl (olive oil or a non-dairy substitute like Earth-Balance is cool, just so it doesn’t stick). Turn to grease top. Cover. Let rise in a warm place, free from drafts, about 1 hour and/or until doubled in bulk.

Punch dough down and divide in half. Roll each half into a 12×15 inch rectangle. Roll dough tightly from longest side, tapering ends if you want. Place loaves on greased baking sheet that have been dusted with cornmeal (ditto greasing with a dairy substitute. I’m not allergic to corn but I imagine if it’s not a good idea for you but a slightly crunchy, gritty base is still desired, Cream of Rice cereal could work. We’ve run out of cornmeal and the bread came off the sheets just fine without anything but “butter.”)

Cover bread. Let rise in warm place with no drafts until doubled in bulk (about 1 hour).

With sharp knife, make 3-4 diagonal cuts on top of each loaf.

Bake at 450° F for 25-30 minutes. Remove from oven. If doing egg wash – which we skipped – beat egg white and water together with form and brush over top of each loaf; bake for 5 minutes longer. Bread will make a nice hollow knocking sound when done.

Remove from baking sheets and cool on wire racks.

Should yield ~ 30 slices, give or take.