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Reflections on the Messy Complexity of Chronicity

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Into the Freezer

Evelyn Herwitz · January 19, 2016 · 4 Comments

Okay, okay, it’s winter. I get it. Those unseasonably balmy December days are a distant memory. The temperature is dropping, the wind chill is rising, and it’s downright cold outside.

photoFive of my fingers are in bandages, one infected ulcer in my left middle finger has required antibiotics for more than a month, and it takes me forever to get going in the morning and to bed at night because of all the hand care.

But I refuse to give in to the weather. Forewarned is forearmed. Friends in Chicago have been telling me about the frigid temperatures there, and it was only a matter of time before the Arctic Freeze came our way. So this past weekend, I found a new pair of mittens with all the right qualifications: lightweight, thermal insulation, with cozy channels for my fingers like an interior glove, suede feel for driving, soft, easy to manipulate. A big score.

I also found a new winter hat (it helps that everything warm is now on sale). It’s one of those fake fur jobs, like a fuzzy bomber’s helmut, that covers my neck and ears and wraps under my chin. I did not buy this for looks. It is far from flattering, given my narrow face and long nose. But no matter. It’s definitely a good addition to my other winter gear, especially when paired with a snug wool hat underneath. It functions like a hood, better than the oversized one that came with my warmest winter coat.

So, the only item left on my list is a pair of insulated winter boots. I’ve somehow managed to go without for a long time, relying instead on a pair of cleated overshoe boots for really bad snow and ice. But they don’t work for driving or city walking. And my rain boots, made of rubber, make my feet sweat when I use them to drive, which only causes my toes to get chilled if I then walk outside.

It’s a lot of work, all the gearing up to go out. Reminds me of when I was a kid and my mom made me wear snow pants over my skirts for school, the kind that had clip suspenders to hold them up. I hated those snow pants. They made my skirts bunch up at the crotch. And those old red rubber boots, the kind with elastic bands as button loops. Clip-on mittens. The works.

Even still, I would play outside for hours in the snow, building snowmen, sliding down the back hill on our old Flexible Flyer, making snow angels. I’d play until my teeth chattered and my fingers went numb. For a healthy little girl, warming back up with a cup of hot chocolate was half the fun.

Now I have to force myself out the door just to walk in this weather. But once I’m all bundled up, I still love the fresh, crisp air, especially after a snowfall. I love the transformation of trees to Belgian lace. I love seeing all the critter tracks, knowing who was in our yard or up the street, otherwise unseen. I love the stark winter light and the way dusk turns snow blue.

So, here’s to you, Old Man Winter. Much as I dread your annual arrival, it wouldn’t be the same without you.

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, Hearing, Mind, Sight, Smell, Touch Tagged With: body image, finger ulcers, how to stay warm, managing chronic disease, Raynaud's, resilience

A Walk in the Woods

Evelyn Herwitz · October 13, 2015 · 2 Comments

The leaves are turning later this autumn. Warm weather through September has delayed our annual New England spectacle. The sugar maples are just beginning to splash streets and forests with their glorious golds and oranges and crimsons. And the brightest leaves are just beginning to fall, as they must, as the flow of sap slows and the trees harden off for the winter ahead.

photoWith the trees’ annual cycle of endings have come losses for friends. Three have bid goodbye to parents in the past few weeks–aged 89 to 98. It’s been a time of cooking for shiva meals, joining in evening prayers, hearing stories of long lives, well lived. The last funeral was yesterday, October 12.

Yesterday would have been my mother’s 93rd birthday. She died 16 years ago. She always enjoyed the fall. As leader of our Girl Scout troop when I was in grade school, she took us on camping trips in the woods, where we would sleep in big canvas tents pitched over wooden platforms. I’m sure those adventures nurtured my love of walking in the forest, especially at the height of autumn.

I was thinking of her as Al and I hiked in a nearby state forest on Sunday. My joints began to ache and my legs were heavy by the time we emerged from the trails, but the view and the scent and the refreshing air were worth it. So, Mom, these pictures from our hike are for you. Rest in peace.

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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 Tagged With: body-mind balance, exercise, mindfulness, resilience

Waterlogged

Evelyn Herwitz · September 29, 2015 · Leave a Comment

As every schoolchild knows, water flows downhill. And when its established route is blocked, water will always find a detour.

splash-1192331-639x500These basic facts of the natural world became all too clear to us recently, when we encountered a major plumbing problem in our basement. I almost wrote “disaster” or “catastrophe,” but those words only apply to floods, natural or manmade. Our issue was simpler, by comparison—though a very expensive lesson about what not to put down your toilet.

It all started a couple of weeks ago, after we’d finished a lot of holiday cooking and dishwashing, when I went into the basement to put a large pot of leftover soup in our downstairs refrigerator. To my astonishment and dismay, the entire floor on the unfinished side was wet, and the overflow sink next to the laundry was half full of standing water. The top of the washing machine was sprinkled with droplets. I yelled for Al to come downstairs and take a look with me. No signs of any leaking pipes in the ceiling. No choice—time for the plumber.

The first plumber, Mike, arrived within the hour. He took a look at the situation and quickly diagnosed it. Our home’s main drain was blocked. Water had backed up into the sink and overflowed all over the basement floor. He set about snaking the line that ran from the sink, under the concrete floor to the main drain from the house. But that’s as far as he could go. The sink was still backing up if we ran water from upstairs. He told us not to flush the toilets.

So the next step required a drain specialist. An hour or so passed until the next plumber arrived. He didn’t introduce himself, but I’ll call him Dave. He used a larger snake to get into the main line from our house to the city sewer. Within an hour, he had cleared a big glob of grease from the main line. “It’s like cholesterol,” said Dave. “It just accumulates over time.” We tested the system by flushing the toilets a couple of times, and all seemed fine.

At this point, I was relieved and felt we’d gotten off pretty easily with maybe a $250 plumbing bill. But water finds many creative ways to flow downhill.

The following Sunday, Al and I decided to do more decluttering in the finished basement family room, part of our mega-project for the fall. As we began sorting through the girls’ old collection of arts and crafts boxes, we discovered that the bottom shelf of the plywood built-in cabinet was wet, as was the rug. Quite wet. No sign of leaking pipes. We mopped it up as best we could, assumed that water had somehow flowed from the other side of the basement from the earlier mess, and put on a fan to help dry it up after we’d finished sorting through the clutter.

Everything seemed to be fine. I checked the rug a few days later and it was drying out, so I turned off the fan.

Then, on Friday night, after we’d finished washing dinner dishes, something nudged me to go downstairs and double-check the rug. It was sopping wet. The laundry sink was half full. We pulled everything out of the cabinet’s bottom shelf and discovered a sliding panel. From behind the panel, I could hear water hissing. Al forced the panel to the side, and we saw a series of pipes and valves, but no drips. One pipe had an open end that was covered with duct tape, for some mysterious reason.

Al went upstairs and turned on the kitchen sink, as a test. Suddenly water started pouring out of the duct-taped pipe. It had backed up again into the laundry sink and was, for some reason, overflowing into this pipe and onto the cabinet shelf and rug. So, now we knew why the rug was wet. And why it had been wet before. And how much time had elapsed from the first soaking to this one.

Over the weekend, we called our regular plumber again. Despite the fact that we would be paying extra for after-hours, and the on-call plumber’s boss would not reveal weekend rates, it couldn’t wait until Monday, because we could not safely flush the toilets.

This time, John came. He was very good natured and quickly assessed the situation. The main line was again partially blocked, and the pipe behind the cabinet had connected to another sink at one time, but was never properly capped. Fixing that problem was easy. The blockage proved stubborn. He tried snaking into the main line from the house and was able to relieve some of the issue, but it was soon clear that we needed another drain specialist. “Looks like some kind of a towel,” he commented, pulling out a small, black, rectangular piece of cloth-like material.

At this point, I was feeling uneasy. Not only were the overtime hours adding up, but I had a sneaking suspicion that I knew the cause of the blockage: so-called flushable bathroom wipes. I have relied on these for years for personal hygiene, because my fingers are so damaged that toilet paper alone does not do the trick. I was going to need another strategy.

John’s drain specialist was unavailable that afternoon, so I searched Angie’s List and found another plumber nearby. His company also charged extra for weekends, but at least, this time, he quoted me a rate over the phone.

Joe arrived within an hour. He came with heavy-duty snaking equipment, enough coil to reach 100 feet, if necessary. He took a careful look and agreed that the main line was the place to start. But he wasn’t sure if that was the whole issue. He was correct.

Four hours later, after snaking the main line to the street twice and the main standpipe, through the pipe under the concrete floor, out into the main line to the street, Joe was finally able to clear the system. He explained a lot about our plumbing as I watched him working very hard. I got plenty of exercise going up and down the stairs to run the tub and flush toilets, so we could check water flow. At least a dozen of those little towelettes came up, snagged in the snake coils, to confirm my suspicion. The wipes were most assuredly not flushable. One very expensive lesson learned. If I still use them, I can’t flush them.

But we’re not done, yet. Vibrations from snaking the old cast iron standpipe caused something to crack in the connection between the kitchen sink and the pipes above. The pipes are in a wall. So we have more expensive repair work to do this week. And we can’t use the kitchen sink until we finish the job.

“It’s only money,” said Al, philosophically.

Joe cleaned up his mess. He made notes for the next plumber about what he’d done. His bill was expensive, but he’d earned every cent. We went out to dinner, then to Home Depot to rent an industrial vacuum to suck the water out of the rug. We’ll probably have to replace the rug sometime soon, but not until the rest of the mess is paid for.

At least we found a good plumber. As Joe said, “You ask five different plumbers and you’ll get five different answers.” Now I know which one to ask, first.

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.

Image Credit: Patrizia Schiozzi

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: finger ulcers, hands, personal hygiene, resilience

Orange Moon

Evelyn Herwitz · September 1, 2015 · 1 Comment

With August now behind us, signs of fall are everywhere. On recent walks I’ve noticed that our neighbor’s sugar maple is just beginning to shed a few leaves. Nights are cooler. It’s already getting dark by 7:30.

photoBut I’m not quite ready to let go of summer. So it was a gift on Sunday—a beautiful, sunny, warm day—that Al and I made it to one of our favorite beaches on Block Island, just off the Rhode Island coast.

As a child, I loved to swim in the ocean. Our family would vacation on Cape Cod, and I’d always beg to go to Nauset Beach, part of the National Seashore on the Cape’s eastern coast. There I would play in the waves until I turned blue and my teeth chattered. Nothing could stop me from swimming and body surfing.

Decades later, I still love the ocean, but it’s been many years since I could get in the water. Most of the time, it’s simply too cold and not healthy, given my Raynaud’s. But even when the water is warmer (yesterday at Block Island it was 73ºF, pretty comfortable for the Atlantic up here), I can’t risk immersing my finger ulcers in the sea. Too high a chance of infection. One year, when the girls were young, I tried fastening latex gloves around my wrists with duct tape so I could swim, but the water still seeped in.

So I’ve learned to appreciate the ocean in other ways. While Al swam yesterday, I finished reading a novel. We took a long walk up the beach, examining pebbles and rocks, searching for sea glass. I dipped my toes in the water. I took some pictures. I listened to the mesmerizing sound of the waves. And I breathed in the wonderful moist air, which does wonders for my too-dry nose and scarred lungs.

The water is an endless source of fascination, ever changing. Then there are all the birds to watch. One particularly bold—or indifferent—white-and-gray herring gull strutted past me as I read, its yellow eye scanning the sand for leftovers, close enough for me to touch it if I’d dared. (I didn’t.)

As the afternoon shadows grew long, I bundled up in the various layers I’d brought—sweater, sweatshirt, blanket, hat. We left the beach, reluctantly, around 5:30, and walked back into town to find a place to eat dinner. It was still warm enough, away from the shore breeze, to dine outside.

Later, on the ferry back to the mainland, we sat on the top deck and watched the dark shapes of the island’s dunes slip by in the night. Even with the breeze created by the ferry’s forward motion, I was able to stay up top and enjoy the stars. As our boat neared Point Judith, we turned around to see the nearly full moon high over the horizon, casting a glistening shadow across the water. It was huge and orange, the color of summer sunsets and fall harvests.

I couldn’t have asked for a better ending to a great summer.

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, Hearing, Mind, Sight, Smell, Touch Tagged With: managing chronic disease, mindfulness, Raynaud's, resilience, Sjogren's syndrome, vacation

Walk This Way

Evelyn Herwitz · August 18, 2015 · 1 Comment

Ever since we got back from vacation, I feel too sedentary. Instead of exploring for hours on foot (true, it was a bit more than my feet could handle), I’m sitting at my computer far too much. Ginger’s no longer here to bop my hands off the keyboard when it’s time to go out for a walk around the block. It’s all too easy just to keep writing and not get any exercise.

walk-on-1445129-639x424So I’m trying to change my habit. I’ve tracked a half-hour walking route around our neighborhood—a manageable distance—and my goal is to get my butt off the chair and out the door at least four times a week.

This is actually proving easier than I expected. In fact, it’s quite pleasant. (It helps to start a walking habit when it’s warm out.) I’ve made it out and about my route at least five times in the past week—even Monday evening, after a sweltering 90-degree day.

Em is home for a transitional break between her summer internship in D.C. and returning to grad school, so she’s joined me a couple of times for a walk-and-talk. On other days, I’ve enjoyed a chance to clear my head and walk in silence. There are plenty of street trees for shade and only a few cars on the side streets to watch out for. We’re fortunate to live in a safe neighborhood with plenty of dog walkers, cyclists, families pushing strollers and other folks out walking or jogging.

Sometimes, I find myself so deep in my head that I barely notice what’s around me. Other times, I try to focus on the colors of the houses and birdsong and gardens as a meditation, staying in the moment. I’ve decided it doesn’t matter which mode I’m in, as long as I stretch my legs, swing my arms and get lungfuls of fresh air for a good, aerobic half-hour.

What if it rains? Depends on how long and how intensely. My alternative is to go to the gym and ride the stationary bike—not as refreshing, but at least I’m exercising.

It remains to be seen how well I can keep this up as the weather gets cooler and, eventually, too cold for me to be outside. But I figure if I establish a solid pattern now, when the walking is easy, my body will get addicted to the exercise and I’ll crave it enough to stick with it.

I definitely feel better when I walk. And worse when I don’t. No doubt about that. I can do it any time I want. Best of all—it’s free.

So, no excuses. Time to get moving.

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: Francesco Maglione 

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: exercise, feet, managing chronic disease, mindfulness, 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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