Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

‘Tis the Season

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Thanksgiving snuck up on me this year. Not that there weren’t enough hints. Two weeks ago, as I sat in my optometrist’s office, Christmas carols wafted through the waiting room. Since then, I’ve noticed Santa statues guarding the aisles at CVS, holiday wreathes decking the doors at Home Depot and Black Friday sales clogging my email.

Oh, wait, was I talking about Thanksgiving?

Hard to know which season it is, or to remember what the holiday is supposed to be about. You don’t even see those hokey turkey decorations anymore in stores—you know, the ones with the cardboard heads and tails connected by honeycombed crepe paper bodies—or garlands of fake autumn leaves. As soon as the pumpkins and Halloween candy go on mark-down, the Christmas decorations come out. Given the commercial Black Friday competition, I’m betting it won’t be long before we’re confronted with holiday mega-sales starting November 1.

The weather is no help, either. Although we avoided the crazy snow that whomped Buffalo this past week, the polar vortex that swept through New England threatened to turn November into January. I now have seven ulcers on my fingers and one persistent sore on my inside right ankle. I am going through bandages like confetti. Some of these ulcers developed weeks before the freezing weather, but several emerged in the past few days, despite my best efforts to protect my hands. Way, way too cold for this time of year, and my fingers are not happy.

A reader recently suggested taking a vacation in Hawaii. This idea has some appeal.

Even as frigid temps made me cranky last week, however, we’re now enjoying a mild interlude before a Nor’easter that could bring at least a half-foot of snow by Wednesday evening. Thank goodness I already put the snow tires on my Prius.

Snow or no snow, I’m looking forward to the approaching holiday. Every year, we get together with our cousins for a wonderful meal, football games on the flatscreen TV and the comfort of family and friendships. And I have much to be grateful for. . . .

Our daughters are both thriving in their respective graduate school programs.

I have a full plate of work for wonderful clients.

We have a beautiful home on a quiet street with good neighbors who wave and say hello as I walk Ginger around the block.

Ginger is 16 and still has “pep in her step,” as our vet notes, with amazement.

Al has made it through yet another sale of the hospital where he is a social worker, and despite the less-than-desirable health insurance provided by his new employer, we have managed to cover our deductibles for my medical expenses (at least, so far).

I’m holding my own with my health. It never gets easier, but I have enough experience with scleroderma that I can figure out work-arounds when my hands aren’t cooperating or my feet need extra support or my body just needs more rest or time to do whatever it is I’m trying to do.

I am blessed with loving family, good friends, a supportive synagogue community and enough resources to live a modest, comfortable life. I have access to some of the best medical care in the world, right in my own backyard. I work for myself, set my own pace and own my own time.

And I can write.

Time for Thanksgiving, indeed.

Photo Credit: smilla4 via Compfight cc

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.

In Praise of Naps

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It’s 2:30 in the afternoon on a dreary, rainy Monday, and my brain is going on strike. I have spent the morning meeting with clients near Boston, which required more than two hours of commuting in a steady downpour, followed by an hour-long phone appointment when I got back home. The conversations were all meaningful, stimulating and productive.

But now I can’t fathom the idea of sitting at my desk for the rest of the afternoon, and I have a lot of work to do. So I set the timer on my iPhone for 20 minutes, lie down on the couch with a cozy blanket, and go to sleep. I wake up a few minutes before the timer sounds, totally refreshed. My mind is completely clear. What a gift.

Years ago, when I was in grad school, I first discovered my mental low point between 2:30 and 3:30 p.m. (unfortunately, back then, I had a class during that hour, and even though I found the content fascinating, I struggled to stay awake). This circadian cycle is offset 12 hours later—if I wake around 2:30 a.m., I can’t get back to sleep until at least 4:00 a.m.

When I was in the early stages of scleroderma, freelancing as a writer, I had to take a nap nearly every afternoon. The disease was exhausting, and there was simply no way to get through the day otherwise. It’s been decades since that phase, and even as I’m often tired mid-afternoon, I usually power through. Often, it helps to walk Ginger. Fresh air works wonders for the mind.

But I realized from my experience Monday afternoon that it pays dividends to listen more closely when my body is trying to tell me to lie down. I’ve resisted naps for a long time, in part because I don’t want to lose precious hours to sleep, and in part, because I don’t want to backtrack to those early years of illness.

Twenty minutes is a perfect interval for a nap. I’m tempted to call it a “power nap,” but that phrase suggests you need to justify napping, so as not to seem lazy. Really, it just felt good—not too short to make me feel even more weary, and not to long to make me feel wasted for the rest of the day. I returned to my desk, ready to get to work, and made it through my entire task list with great efficiency.

I don’t expect to take a nap every afternoon. It all depends on what I’m doing and how I’m feeling. But I certainly won’t think of it as slacking off or backsliding with my scleroderma. I will consider it a worthwhile investment in my health, well-being and ability to do what I need to do. Not bad for 20 minutes.

Image Credit: “Our Sleeping Beauty,” by J.S. Pughe (1870-1909), illus. from Puck, vol. 41, no. 1041 (1897 February 17), cover. Library of Congress Prints and Photographs Division.

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.

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.