Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

The Big Bang

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Last Tuesday night, I was backing out of our driveway, minding my own business and listening to music, when, WHAM, I hit something. Now I’m a careful driver, and I had checked both directions before moving. It was really dark out. I was not happy.

I pulled over to the side of the road to see what happened. Not only had I hit something—I had hit Al’s Honda Civic. He’d parked on the street, because our eldest was home visiting and her car was in his normal spot to the side of the driveway, but I didn’t see his car when I backed out.

Not only had I hit Al’s car, but I’d dented the passenger door on the driver’s side. Thirty seconds at five miles an hour. Hundreds of dollars of damage. I hurried back into the house to tell him.

To Al’s great credit, he didn’t get upset or angry. He gave me a hug. We went outside to look at the door. It still opened and closed properly. He told me not to worry and to go on to my weaving class. For the next hour-and-a-half, as I wove, all I could think of was that I was determined to make the repairs, regardless of the cost.

Then I got home and took a closer look at my Prius. Not only had I dented Al’s car door, but I had cracked my rear bumper. It’s fiberglass, one piece. More dollars flying out the window. How is it possible to be driving so slowly and do so much damage to two cars?

The day after New Year’s, Al took the cars to a trusted autobody shop and got the estimates. Well, it wasn’t as bad as I expected, but it was bad enough—$750 to repair both. Oh, boy. We decided to go ahead, because I wanted to fix what I’d messed up.

So, for the next couple of weeks, we’ll have one or the other car in the shop. We’ll find the money somehow, the cars will look as if nothing had ever happened, and I will most certainly try not to make that expensive mistake again.

With a few more days’ hindsight, here are my bigger takeaways:

The older I get, the more closely I have to pay attention when driving at night.

I’m very lucky to have such a good husband who doesn’t get mad when I bang up his car.

We’re fortunate to be able to repair both cars, even if it will take a few more months to pay off the credit card.

They’re just cars. They aren’t people. No one was hurt.

Now, if only I could find a body shop that would make me good as new for $750—that would be something.

Photo Credit: Flickr Creative Commons

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.

Power and Light

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I have a new item on my to-do list: Figure out whether we should stick with our current (no pun intended) electricity supplier, or find a more competitive source. This is important, because the rates are jumping on January 1, and we rely on electricity to power our heat pumps, which I rely on to stay warm and keep my Raynaud’s in check.

We switched over to the pumps from oil heat a couple of years ago, in an effort to make our home more energy efficient. We’ve certainly saved a lot on oil (only use one tankful a year, now), but I have to be very careful how I use the heat pumps, to manage our electric bill. There’s a pump in each room, which allows for customized, zoned heat. I try to limit which pumps are on according to where I am in the house during the course of the day.

For the most part, the heat pumps work well, but when the temperature drops below about 15 degrees Fahrenheit, we have to revert to a mix of oil and baseboard electric heat. Also, there have been days already when it’s just been so windy and cold that I’ve turned on the baseboard heat (less efficient, supposedly) in my little office and the kitchen, because it feels more even.

So, Sunday night I began sorting through all the potential options and learning about kilowatt hour charges for electric supply, plus distribution charges and more. It’s a lot to tackle, and we need to figure it out before January 1, when the rates jump.

There are many other things I would rather be doing right now than a cost-benefit analysis of our electrical supply options.

On the other hand, I’m glad we at least have options and aren’t necessarily stuck with a big rate hike. And I’m very grateful to have the means to keep our home warm enough for my body, with my broken internal thermostat, and a husband who doesn’t mind the added expense.

It’s just a cost of living with scleroderma in New England.

My quest for more cost-efficient power comes as we begin the festival of Hanukkah. We light the first candle this evening. I look forward to this holiday every year, because it always falls near the Winter Solstice. So with each candle that we light for the eight days of the festival, we’re getting closer to the point when the days will start getting longer again. Just knowing there will be more sunlight soon always gives me a boost, despite the cold temperatures outside (and higher energy bills, whatever the source).

When you light Hanukkah candles, you’re not supposed to use them to illuminate a room or as a source of light for work. You’re just supposed place the hanukkiah, an eight-branched candelabra, in a window, where the flickering candles can be seen from the street—silently, peacefully conveying their profound message of religious freedom and liberation from oppression.

Power and light come in many forms. On Hanukkah, both are free.

Happy holidays.

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.

Photo Credit: ** RCB ** via Compfight cc

Around the Block

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I’m not yet used to earlier sunsets. It always takes me a few weeks to adjust when we turn back the clocks for standard time. On Friday afternoon, I was running around, trying to finish errands before sundown, which heralds our Shabbat observance, and just made it home as dusk settled. Whew.

Back to my desk on Monday, I lost track again, this time because I was immersed in my writing, only to realize it was nearly 4 o’clock in the afternoon and I had not yet walked Ginger. I should have taken her out when it was brighter and warmer after lunch, but she needed the exercise. I did, too.

So, despite the darkening, chilly fall afternoon (for me—others I passed were in fleece vests or zip-up jackets), I donned my down winter coat and a hat, clipped Ginger’s leash to her collar and headed out the door.

A lungful of fresh air immediately helped to clear my brain, woolly with words. Ginger paused by the huge pile of dried leaves in front of our curb to explore the many and varied, fascinating scents. Our walks take longer this time of year, until all the leaves have fallen and city streets are swept clean. I have to urge her to keep walking so my hands don’t go numb.

“That dog is amazing,” commented our neighbor, walking her puffy little pooch in the opposite direction. Our white-faced golden is 16, but still can pull me down the street if she has a mind to. My neighbor’s dog decided to lie down in the street and watch us, but Ginger, whose nose is better than her ears and eyes, ignored it and kept on snuffling, leading me slowly forward.

Around the corner, two boys in shirtsleeves shot hoops in a driveway. Everything glowed with a deep orange patina—the piles of rakings along either side of the street, the Norway maples that still clung to a few golden leaves, Ginger’s fur, the errant basketball that rolled across our path. “How are you?” asked the boy as he ran to retrieve it. We exchanged pleasantries, and he loped back to his game.

A friend wisely observed over the weekend that all the frightening headlines (Ebola! ISIS! Washington Gridlock! Climate Change!) that describe a world in seeming collapse don’t really square with everyday experience. Most people are good. Many strangers can be trusted. A 12-year-old boy can be polite to a woman walking her old dog around the block.

As we rounded the next corner and headed up a slight hill, the sky turned salmon and violet. For a few astounding seconds, the trees and leaves seemed infused with an etherial, rose light. If I hadn’t left the house with Ginger at the exact, too-late moment, kicking myself for forgetting about the time change, I would have missed it.

Home again, dark settling in, I rubbed Ginger’s ears and thanked her for inspiring me to get out of the house. Sometimes the best part of the day is the part you wanted to avoid.

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.

Social Graces

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Who ever invented the practice of eating at a party while you’re standing up? I enjoy social gatherings with friends and family for special occasions, but I am a klutz when it comes to balancing hors d’oeuvres plate, napkin, utensils, plus a drink, all while milling about in a crowd and chatting.

It’s gotten to the point that I often stick to just a glass of wine or seltzer, and pass on the finger food. I can’t eat without drinking, or I risk problems swallowing. And I can’t manage the plate and the drink with my hands, and still eat, without risk of dropping everything. As for the finger food, with so many bandages, I don’t like eating with my hands, anyway, especially if the food is drippy or the least bit oily.

This is not the most serious problem in the world, certainly. But it is a challenge, and I do feel awkward unless I can find a place to sit and enjoy the nosh, or at least one of those high tables that are designed for standing and eating at a party.

Portable food courses are, I suppose, just another way our casual lifestyle finds expression. Why be constrained by formal seating arrangements when it’s fun to mingle and eat at the same time? When I was younger and my hands worked, this was fine.

But the older I get, and the less nimble my hands become, I really do prefer a sit-down meal. Even party buffets, when you take a plateful of food and find yourself a seat on the couch or a chair, create coordination challenges. Balancing a plate on my lap while trying to manipulate knife and fork, especially if they are made of plastic, is a recipe for a spill. It’s hard enough to grasp the thin plastic utensils, let alone apply enough pressure to cut food with the so-called knife, without sending the food skidding onto my good clothes or the floor.

That said, my solutions for party-eating logistics are as follows:

  • Don’t load up your plate. Less to cut, less to spill and, of course, less risk of overeating.
  • Find a quiet corner where you won’t get jostled while you eat. This also addresses a second issue having nothing to do with scleroderma and everything to do with aging—I have increasing difficulty hearing what someone is saying when there is a lot of background noise.
  • Even better, find a seat in a quiet corner with a table where you can rest your drink while you eat.
  • Best of all, invite your closest friends at the party to join you in your above-mentioned quiet little corner. That way you can enjoy your food, your drink and a good conversation. If you spill something, your friends won’t care. And they’ll help you clean it up.

Image Credit: Le Sortie de l’opéra en l’an 2000, Albert Robida, c. 1882, Library of Congress Prints and Photographs Division, courtesy publicdomainreview.org.

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.

Futurecast

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I wore my long winter coat this weekend. Not the heavy-duty one, but the medium weight, good-for-when-it-gets-below-50F-degrees-coat. And a warm hat. And gloves.

Book of SnowflakesIt’s only the beginning of October, but I’m already pulling out my sweaters and sweatpants, fleece vests and scarves, wool trousers and skirts, as the temperature sinks. This is always the time of year when I feel a bit self-conscious about bundling up while my neighbors are still walking around outside in windbreakers. But I’d rather be warm and keep my hands from turning purple and numb.

According to the Old Farmer’s Almanac website (is it just me, or does that sound like an oxymoron?), this winter in New England will be “much colder than normal, with near-normal precipitation and below-normal snowfall.” Looks like we’re in for a bit of snow before the calendar year is over, then just a lot of frigid temperatures until mid-March.

That is, if you believe the Almanac’s predictions. They claim 80 percent accuracy.

We were discussing this with family and friends at Al’s cousin’s home over the weekend. Those who commute by car and park on city streets were rooting for the Almanac—less to shovel sounded pretty good after last winter’s snow emergencies. For me, however, the words “much colder than normal” are more forbidding than snow storms (until the snow piles so high there’s nowhere to put it).

My winter weather trepidations are tempered by living in a landscape so romanticized by Currier and Ives. New snow is beautiful. It’s clean and sparkly and magical. I always enjoy the mystery of the first snowfall of the season, how it transforms trees into spun sugar.

Nonetheless, snow, by definition, means the temperature is below freezing, and my body just doesn’t adjust easily to the shift. We’re not there, yet, but as I walked Ginger, our 16-year-old golden, around the block on a sunny, crisp fall afternoon this Sunday, I could feel the season’s change in the wind.

Was it still, technically, summer just about a month ago? I have more digital ulcers, more bandages. I’ve turned on the heat pumps to warm the first floor of our home while I write in my small office, just off the living room. I’m wearing long sleeves and a warm cardigan.

Snow or no snow, the idea of “much colder than normal” sends shivers throughout my body. Nothing to do but make sure I have enough layers and brace for whatever winter weather lies ahead. At least we still have the best of the fall foliage to enjoy for the next couple of weeks.

Would I ever move to a warmer climate? I don’t know. I love my home, my community. Much as I struggle with the temperature shift each fall (spring brings its own unique challenges, too), I love all four seasons here.

So, pile on the sweaters and boil up the oatmeal. Colder weather? Bring it on.

Image Credit: Illustrative plates from Snowflakes: a Chapter from the Book of Nature (1863), a collection of poems, extracts, anecdotes and reflections on the theme of snow and the snowflake.  See more: http://publicdomainreview.org/collections/illustrations-of-snowflakes-1863/.

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.