Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

A Flamboyance of Flamingos

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This one is just silly. Because we all need some silliness these days.

I’ve been watching the birds at our feeder, a favorite meditation. The feeder looks like a globe cage (to keep out the squirrels) hanging from a pole attached to a maple in our backyard. We hadn’t filled the feeder in some time, because chipmunks had figured out how to climb the pole, slip into the feeder, and steal all the food. So far, they haven’t rediscovered it, although at least one squirrel has now learned how to climb the pole, jump onto the feeder, and swing it wildly so food dumps on the ground. Clever critters.

But back to the birds. Sparrows have taken over the feeder. They travel in gangs, which reminded me of all the wonderful words for groups of animals. There are the familiar terms—a pride of lions, a school of fish—but bird flock terminology is the best.

Take, for example, a quarrel of sparrows. So appropriate, considering how much they chatter and cheap.

Here are some other favorites:

  • a parliament of owls
  • a peep of chickens
  • a charm of hummingbirds
  • an asylum of loons
  • a palette of painted buntings
  • a Vatican of cardinals
  • and, best of all, a flamboyance of flamingos

Which got me to thinking . . . what if we had similar descriptors for professions, such as:

  • a vault of bankers
  • a drill of dentists
  • a hose of firefighters
  • a pontification of politicians
  • a diagnosis of doctors

Which then led me to specialists . . .

  • a pulse of cardiologists
  • a rash of dermatologists
  • a pod of orthopedists
  • an inflammation of rheumatologists
  • a stream of nephrologists

Which brings me to all of us who deal with specialists all the time. How about this?

  • a persistence of patients

Happy July.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: v2osk

Swelter Skelter

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It takes a lot for me to sweat. I rarely get that overheated, since my body revels in warm weather, even hot. But humidity is another matter altogether.

July 4th weekend here in Central Massachusetts, the air was thick. The sweat was literally pouring down my face. That sensation is so rare for me, I was surprised. I had an annoying cough, too, so I wondered if that had something to do with it. Was it the air quality or a cold that was irritating my lungs? Why was I sweating so much?

The TV meteorologist had a simple answer: The humidity was so bad, it was “disgusting.” Agreed.

Disgusting enough for me to turn on our heat pumps, which double as dehumidifiers and A/C when it gets really bad. I hate A/C, because it inevitably makes my extremities numb, and avoid it at all costs, but I was perspiring so much that I finally caved. After a few hours, the house was bearable. By Saturday evening, thunderstorms had rolled through and taken care of the rest. Sunday, the weather was a blessing, and we opened the windows again.

On Monday, as I write, I’m back to my usual summer gear, a sweater over light clothes. I can sit at my computer and regulate the temperature in my home office to my precise needs. Outside, it’s in the high ’70s, sunny and dry. No need for anything but window screens and fresh air.

Now there’s mounting evidence that some of my aversion to air conditioning has nothing to do with scleroderma and Raynaud’s, and everything to do with gender.

According to a recent study, researchers at the University of Southern California and the WZB Berlin Social Science Center found that women perform better on verbal and math skills tests as the temperature rises. Women college students in Berlin improved test scores by 1.76 percent for every Celsius degree increase. And when indoor temperatures were raised from the 60s to 70s (Fahrenheit), their math test scores increased by 15 percent.

Any woman who has struggled to function in a frigid office space during the summer, wrapped in heavy sweaters or even winter coats, with a space heater under her desk, because the A/C is cranked to near refrigerator temperatures, recognizes the truth in this finding. (If this sounds all too familiar, feel free to cite this study to the Powers That Be. Here’s the full report.) I used to suffer in an office like that, and one of the great joys of working for myself is that I no longer have to put up with such energy-sucking practices.

So, I’m grateful to have an option when the humidity and heat overwhelm even me. But I’m also glad that I’m the one who gets to regulate the thermostat.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Vitor Pinto

Curios

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It took me twenty years, but I finally set up my collection of curios this past Sunday. We had packed up my lovely figurines when we moved to our current home in June of 1999, and they had remained boxed ever since.

It’s not that I didn’t care about them anymore. Quite the contrary, each piece is quite special. But I kept putting off the task, and putting it off, and putting it off—because I was afraid I wouldn’t be able to do it without dropping and breaking them. My fingers just aren’t that nimble anymore.

I began collecting glass animals when I was a kid. Every summer, our family would vacation on Cape Cod, and one of the highlights of the trip was a visit to a store in Hyannis where an artist would manipulate sticks of glass over a bunsen burner to create whimsical creatures. If my parents had let me, I would have watched him for hours. Among my favorite purchases with allowance saved for weeks were a white horse rearing on its hind legs, a pair of pink elephants, a tiny red hippo, a dove, a turquoise dolphin.

At some point along the way, I was given my paternal grandfather’s collection of miniatures. These included two painted metal orchestras—one made up of frogs, and the other of monkeys, elephants, foxes and a devilish conductor. There were some carved wooden figurines, and some of carved ivory, as well. Eventually I found an enclosed glass curio box and displayed them in the living room of our prior home for many years.

I missed them. But with all the bandages and ulcers and Raynaud’s and hand surgery, I just couldn’t get myself to risk displaying them again. That is, until this past year, when I began keeping a Bullet Journal, which is a great system for keeping track of just about anything you need to get done. For my list of things I wanted to accomplish around the house, I added in setting up my curio collection.

Now, you can keep pushing off items in a Bullet Journal and rewriting them in the next week’s or month’s to-do list. But after rewriting an item enough times, you realize that either you should take it off the list, or just do it, already. Given that June marked the twentieth anniversary of our move, it really was high time to take care of it.

So last week, I found the box with my collection, marked “fragile,” on the top shelf of my closet. It was filled with plastic ziplock bags, each containing about ten figurines, carefully wrapped in tissues. But where was the curio display box? Upstairs, downstairs, in the basement I searched, to no avail. Then Al came home, and within a half-hour, found it in the basement—in a box marked “glass box.” Well.

The glass box was in perfect shape, cushioned by yellowed newspapers from June 1999. I figured out a good spot to hang it in the living room, measured the box and marked the wall, and tried to hammer a picture hook at the correct spot. It slipped and dropped to the floor. I tried again, using a pair of needle-nosed pliers to hold the nail. This time I was able to start it, but the angle was wrong as I tapped with a tack hammer. Time to ask for help if I wanted to finish before dark. Al took care of the hooks and hanging the box.

Now it was time to place the figurines. As I unwrapped each one, it was like meeting old friends. Using a pair of round-nosed pliers from my jewelry-making supplies, I was able to place them without too much trouble. That is, until one piece, a green glass octopus, slipped, bounced on the floor and disappeared. I stopped myself from trying to move things around to find it, since I didn’t want to cause any more damage or knock another figurine out of the box. The whole process took several hours. Finally, when everything was in place, I poked around on the floor. There was the octopus, lodged between some CDs in Al’s music collection—in tact!

So, now all my little friends are back on display. I took my time, worked my way around the dexterity issue with the right tools, and didn’t break anything. And I can finally take that task off my list.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Gray Matter

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It was a beautiful weekend here in Central Massachusetts, sunny, warm, light breeze, no humidity. Walking the neighborhood was a real pleasure. Despite the lovely weather, however, I spent quite a few hours pouring over my German textbooks and dictionaries. We have a unit test in class Tuesday night, and even though it’s meant to check our own understanding and has nothing to do with grades (there are none), I don’t want to totally embarrass myself by leaving half the questions blank.

I am one of the oldest, if not the oldest member of our class. There is one other woman in her sixties (I think), a few fifty-somethings, a lot of twenty- and thirty-somethings, and one recent high school graduate. It is quite clear to me that a younger brain is more adept at learning a new language. I understand more than I can say, but when our teacher asks a question, my gray matter freezes up. Honestly, there are times, even with my strength in English, that the curtain drops in my brain when someone asks me a question these days, and I can’t find the word. All the more so in German.

However, I have noticed that some words come more readily than others. For instance, I have an easier time remembering German words for clothing (die Kleidung) than for housework (die Hausarbeit). Clearly, personal interests play a role here. On the other hand, gendered nouns are a real challenge. Why, for example, is a skirt masculine in German (der Rock), a dress neutral (das Kleid) and pants feminine (die Hose)? There are some clues in the spellings, but still. No way out but memorization. Which is a struggle.

Our test includes units on clothing, weather and festivals, as well as grammar for comparisons, favorites, explanations, and what you might wish for. Of all these topics, I particularly enjoyed learning weather vocabulary (being a weather nerd). It helps that many of the words are similar to English. Wind is, well, der Wind (although the ‘w’ has a ‘v’ sound). The sun is die Sonne. Rain is der Regen.

My favorite discovery in this particular chapter, however, was the phrase es donnert und blitzt. Which means (no elegant translation) that it’s thundering and lightening is flashing. This answers a conundrum from my childhood, in hearing The Night Before Christmas, why old St. Nicholas named two of his reindeer Donner and Blitzen. Who knew?

Overnight it may well donnert und blitz, as I write Monday evening. At least, that’s what the weather report says. But I’m glad to have enjoyed viel Sonnenschein this weekend. Now, if I could only clear der Nebel (the fog) that hinders my vocabulary recall, I’ll be all set.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Stefan Widua

Readymade

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As the weather finally warms up here in Central New England, I decided on Sunday to take advantage of sales and buy a pair of summer pants. Off to the mall I went, hoping for some good luck. I really don’t enjoy shopping for clothes much anymore. I’m particular, it’s difficult to find something that fits properly, and the mirror and neon lighting can be quite cruel. In addition, all the dressing and undressing can be quite tiring on my hands. But I had some free time, the sales looked good, and I was in the right mood to give it the old college try.

The first store I tried was a disappointment. None of the pants fit properly—either too baggy or too wrinkled. As a seamstress, I know how pants are supposed to fit without “smile lines” in the seat. I also look for quality fabric and workmanship. No luck. I did, however, find a nice summer sweater on markdown, so the visit wasn’t a total loss. (Never can have enough sweaters, year-round!)

So long as I’d made the trek, I decided to check out one more store. They, too, had a good sale on pants. This time, I found a pair that fit perfectly, right off the rack. Only one problem: I couldn’t zip up the zipper all the way. This wasn’t a matter of fit; it was a matter of workmanship. The pants had a left side invisible zipper with a small pull tab, and I could not grasp it firmly enough to pull it above the waistband seam. The seam was just a bit too bulky for the zipper to easily slide past. The pull tab hurt my fingers. And there was no sense in buying pants that I couldn’t fasten properly.

Fortunately, the same style was also available in several other fabrics, and a pair of navy blue pants not only fit, but also the same type of invisible zipper worked easily. So I bought them, happy with my find at a 30 percent discount.

As I drove home, I once again thought that I really need to finally figure out how to sew a basic pants pattern that fits and just use that for the future. I had tried this several years ago, but gotten discouraged with the results. Maybe this summer is the right time to try again. Sure would solve a lot of problems.

Meanwhile, I’m glad I found what I needed within an hour. And that I can zip the zipper.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Artificial Photography