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Reflections on the Messy Complexity of Chronicity

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body-mind balance

January Blues

Evelyn Herwitz · January 13, 2015 · Leave a Comment

Are we there, yet? I mean, springtime. Not even halfway through January, and I’ve had enough, already. I know, I know. Central Massachusetts is not North Dakota or the Yukon or Siberia. My heartfelt sympathies if you live anywhere nearby. But I really, really hate this.

Last week, the Arctic Vortex, or whatever you want to label evil cold weather patterns, sucked all the warmth out of the air. True, we’d been spoiled by unseasonably balmy weather prior to that. But days in the teens and nights in the single digits are not my idea of a good time.

On Thursday, the worst day of all, I decided to brave the cold, regardless, and spend it as planned in Cambridge. This required some strategizing.

I was taking the train to Boston. But Wednesday evening, I realized that neither I nor Al had cash for my ticket, which I had to buy on the train since there is no active ticket counter at our station. I did not want to have to go to the bank on the way, because it was going to be minus-20F windchill and I was not going to try to manipulate the outdoor ATM from my car or leave my car any more than necessary to enter a building. What to do?

Then I remembered my “T” app on my iPhone. Easy-peasy. All I had to do was purchase the MBTA commuter rail ticket and activate it when I got on the train. Just in case we lost Internet service in the morning due to the extreme cold (like I said, I was in high strategy mode), I made my purchase that night. The app came in handy the next morning, too, when I made sure the train was running on time.

My next challenge came Thursday morning. As I confessed last week, I had damaged both Al’s and my car with a back-up mishap that required a new bumper for my Prius and a repaired door on his Civic. My work was completed Wednesday evening. When I went into our garage, I immediately realized:

a) my car reeked of paint fumes; and
b) I had left my car key in the house because Al had driven it back from the body shop.

This required a scramble with the house key, which I managed to drop on the garage floor and struggled to pick up because, well, I can’t easily pick up flat metal objects. So I had to take off my gloves to pry it from the floor. Which made my fingers numb. I said a few choice words.

Once I finally started the car, I knew I was going to have to drive with the window cracked or risk feeling nauseated by the time I got to the train station. On the coldest day of the year. So I cranked up the heat, opened the back passenger window an inch and set forth.

Fortunately, my Prius has a great heater.

For once, I actually got to the train station with enough time to walk to the train without rushing. Ours is a huge, turn-of-the-20th-century station from the grand era of rail travel, so there was no problem waiting indoors instead of on the platform. And, as it turned out, the train pulled in just as I left my car in the open air garage. So I walked through the garage to the station garbed in two layers of sweaters, a wool shawl, wool pants, leg warmers, my heavy down coat, shearling hat, insulated gloves, poofy hood and a warm scarf to hold it all together. I looked ridiculous, but then again, I’m so used to looking ridiculous in weather that most people don’t consider cold that it didn’t really matter. Plus everyone else was bundled head-to-toe, too.

Fortunately, the heaters on the train worked. We pulled out of the station with the car’s front doors stuck open, but a hardy passenger got up from his seat and closed them, since the conductor was nowhere to be seen. I spent the next hour-and-a-half working on a client project on my laptop, very pleased to be riding and not driving in what proved to be horrible traffic, from what I could see on the Mass Pike Extension as we neared Boston.

The worst part of my trip was the walk from the train platform into South Station, bitter cold. Once inside, it was tolerable on the way to the Red Line. My next excursion outdoors—from the Red Line exit to the inside of a Marriott where I waited for my friend to pick me up—left me a bit queasy from breathing frigid air, even through my scarf, but the feeling passed once I got in the building.

Reversing the trip later in the day, I was glad I hadn’t let the bitter weather get the better of me. I relaxed into my seat on the train, noted the horrible traffic westbound on the Pike Extension with smug satisfaction, then returned to working on my novel for the rest of the ride home. My Prius still smelled like paint fumes, even after airing out in the station garage all day, but the heater kicked in quickly enough so that I could crack the window on the short drive to our house and still stay comfortable.

Best of all? When I pulled into our driveway, it was just barely sunset at a quarter to five. The Ice Man may still cometh, but at least the days are getting longer.

Photo Credit: Sangudo 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.

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Filed Under: Body, Mind, Sight, Smell, Touch Tagged With: body image, body-mind balance, hands, how to stay warm, managing chronic disease, Raynaud's, resilience

The Big Bang

Evelyn Herwitz · January 6, 2015 · 6 Comments

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.

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Filed Under: Body, Mind, Sight Tagged With: body-mind balance, mindfulness, resilience

Resolved

Evelyn Herwitz · December 30, 2014 · 2 Comments

How did it get to be almost 2015, already? Time to retrain myself to write the correct year on checks, once again (yes, I’m one of those people who still writes paper checks). And the correct year when I actually write notes or letters by hand (gasp!). And when I track versions of electronic documents. Or date invoices. Or write the date at the top of a page in my journal.

It’s also time for some New Year’s resolutions. Of course, you can make resolutions to do something better/different any day of the year. But there’s something about revising your habit of how you write the date, an act that filters into so many small daily tasks, that prompts a sense of newness, fresh starts, opportunity for change.

So, here’s my list of healthful resolutions for 2015, half-way through the teens decade of the new millennium:

  1. Enhance my weekly exercise routine. I do stretches every morning and Pilates once a week. But I stopped taking dance classes last summer—mainly because I was getting bored and the class involved a long drive. Time to check out a class closer to home or find something better. But I have to move, more, to keep my joints in shape and stay strong.
  2. Say thank-you to someone for something specific, each day. It’s all too easy to get stuck in all the things that go wrong. Expressing gratitude not only helps me appreciate all the good in my life—it also makes someone else’s day better.
  3. Declutter our home. This is a work in progress, to repair, repurpose or recycle what we don’t need and replace what’s broken and beyond fixing. We really don’t need so much stuff. And I feel better when our space is simplified.
  4. Favor locally grown, organic produce. It’s healthier, and it helps the planet.
  5. Write the first draft of my novel. Yes, I’m getting serious about my fiction. Started a novel in the fall, and my goal is to have a solid draft by this time next year. Investing time in my own art is central to my being—and well-being.
  6. Go/do/see someplace/something new each month. I want to keep growing.
  7. Limit multitasking. I’m really good at this, but it drains my brain. This is Part One of slowing down and focusing on what’s really important.
  8. Limit my to-do list to what I can actually accomplish in a reasonable period of time. This is Part Two.
  9. Spend undistracted quality time with family and friends. Silence the iPhone and put it out of sight. (Yes, Al, you can quote me to myself.)
  10. Give back to my community. I have to be careful with volunteer commitments, not to overextend myself and drain my energy. But I’ve found a pretty good balance between family, work and volunteering at present, and I want to continue as long as I’m able.

As 2014 draws to a close, my thanks to all of you who read this blog, to those who have shared your thoughts and feelings, and to all who care to understand what it means to live with a complex disease like scleroderma. My best wishes for a healthy, fulfilling, joyful and prosperous New Year!

Photo Credit: JoePhilipson 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.

 

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Filed Under: Body, Mind Tagged With: body-mind balance, managing chronic disease, resilience

In Praise of Naps

Evelyn Herwitz · November 18, 2014 · 1 Comment

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.

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Filed Under: Body, Mind Tagged With: body-mind balance, managing chronic disease, resilience, sleep

Futurecast

Evelyn Herwitz · October 7, 2014 · Leave a Comment

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, how to stay warm, managing chronic disease, Raynaud's, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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