Chair with Wheels

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This trip marked a first for me. Amazingly enough, I’d never used a wheelchair except in hospitals and doctor’s offices. I knew I needed to try to use my body as much as possible. “Use it or lose it!”: that was my mantra. The truth is that I probably missed out on some evenings out or trips to places like museums or zoos, just because I was simply too tired and couldn’t stand that long.

But at the end of my last trip, I flared. A few days before I  was supposed to fly home, I lost my own private battle to stand rather abruptly, not even making it all the way through the simple hymn I was supposed to be singing. To complicate matters further, the day after I made it back home I’d be undergoing a procedure. I needed rest. I needed help. I needed to not stand for hours in check-in lines, security lines, and boarding lines. I needed a wheelchair.

Of course, I couldn’t just go and request one, pushing aside years of denial in one casual click of the mouse, o so easily. No. I researched involuntarily denied boarding online. I sought advice from that bastion of support, Facebook. People in a dedicated POTS group instantly responded. If it would help, go for it! That’s what it was there for. The wheelchair assistants were paid. No, I wasn’t taking it from someone else, and it wasn’t just cutting in line. If I thought I would have issues, a wheelchair was a perfectly logical, very practical thing to do. I stared at the screen. Then I decided I needed another opinion… so I tracked down my younger sister.

“It’s just a chair with wheels!” she snorted, rolling her eyes. “Just do it already!” Then, problem dismissed, she tossed her hair back and settled down to do some real work.

Hmm.

Ok.

After another hour of pointless agonizing, I finally went through the online check-in process and requested assistance going through the airport. My sister stood behind me, providing emotional support and no doubt inwardly rejoicing that she wasn’t going to be a withered bent shell of a human being due to carrying her stubborn sister through a terminal. All it took was a few clicks of the mouse on an easy website, and it was done.

There rest of the process was equally simple — and amazingly, almost everyone reacted like my sister had the first time I asked her about getting a wheelchair through the airport. We went to the front desk of the airline and checked our bags (ok, I sat off on one side while my sister waited in line. Have I mentioned she’s rather awesome?). The harried man behind the counter very kindly confirmed my reservation and directed us to some seats off to the side. A perky woman checked our boarding passes and brought a wheelchair over in a few short minutes (or rather a transport chair, lacking any way for me to control it). My sister and I spent another few minutes behind a baggage area before another young woman came and took us all the way through security and to our gate, cheerfully and very patiently. We waited at our gate and I chatted with other passengers, not a one of whom seemed to care one whit that I was seated in a wheelchair instead of a normal seat. It was a discount airline and we were all in for a tight and uncomfortable trip no matter what; there was a strong sense of fellow-feeling and brotherhood as we contemplated hours in vinyl jumpseats. There was a longer wait to actually get on the plane, but half-way through the boarding process someone else materialized and propelled me down the ramp.

I napped for most of the flight, curled into my vinyl square like a cat. There are some advantages to being vertically challenged. 🙂 After that rest, I felt like I didn’t really need the wheelchair for the trip off the plane. There isn’t nearly as much standing involved in the deplaning process, and it is extended periods of standing that tax my system. But in the end, I was glad that I simply got back in the seat. Another nice man took us at warp speed through hall after hall…after hall… after hall…. the terminals were strung together and endless. When we arrived at baggage claim, of course our baggage hadn’t — it’s a quirky constant of air travel. If you are on time, your bags are late. The wait for your bags is directly related to how few delays you experienced in flight. Got through TSA fast? Take a number and wait 20 minutes in line at the baggage clerk’s desk, sucker! But the longer you are delayed, the faster your bags beat you to your destination. It once took me 29 hours to fly from the Central Coast of California to Denver. My bags beat me by two days.

I had been worried that I would be judged, the young woman in the wheelchair. How could she need this? I impulsively told everyone what was wrong: “I have POTS. Postural Orthostatic Tachycardia. The part of your body that automatically controls things like heart rate and blood pressure? That’s broken on me.” I told people who didn’t even want to hear it. I was babbling and knew it and just couldn’t stop. It didn’t matter one way or the other, though, and finally I began to relax a tad. Gradually I got accustomed to watching people from my new position. I didn’t seem to be any more or less visible than I was normally, which is not very; people’s eyes frequently slide past me. If they did it now for a different reason instead of the normal lack of perception, I couldn’t tell. There were a lot of butts. It wasn’t always terribly comfortable having someone else push me, because with a transport chair there wasn’t any easy way for me to move myself if I was in the way. I had to crane my neck around to look at the person propelling me, and it felt so impolite to talk to someone without looking at them, but even more impolite to simply sit there without any sort of lubricating conversation.  I got a sort of childish glee from the few things I could do, like pushing the elevator buttons. “I got it!” I’d squeal from the chair, face to face with the ranks of glowing circles. I hadn’t been that pleased with my ability to punch the button for the ground floor since I was four. Ah, well.

For a first experience, it was incredibly positive. I was treated with courtesy everywhere and kindness at almost every turn by the staff. My fellow travelers, amazingly, treated me like any other travel-weary, sweaty, and frustrated journeyer on the bumpy sky lanes. I have to thank Frontier Airlines and their excellent personnel for helping me. It was an emotional step to take, but now that’s it’s been done my worry over using a wheelchair seems nearly as childish as my excitement for pushing elevator buttons. I don’t know whether or not overcoming this reluctance will open up a whole new world of evening operas and museum day trips yet. But I do feel that big events seem far more doable than they have in the past… and I now know that my local zoo rents chairs with wheels. 🙂

 

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.