Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Cycling

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I hit my low energy point every day around 2:30 in the afternoon. I’ve been this way since graduate school. My brain gets fuzzy and my body wants to take a nap. Usually I can push through it.

Twelve hours later, it’s a different story. If I’m unfortunate enough to wake at 2:30 in the morning, chances are I won’t be able to sleep again for another couple of hours. My brain is wide awake, and there’s no use trying to pretend to sleep. Better to just get up and read for a bit, to short-circuit my mental hamster wheel.

Exercise interrupts both circadian cycles. And, now that it’s a new year, I’m back to the gym. I’ve been experimenting with different types of exercise for the past several years. Each has its advantages and drawbacks. Pilates is still the best overall exercise, but the classes I prefer are either first thing or mid-morning on a Wednesday, which is just not optimal timing, since I’m just not an early morning person, and I hate losing the rest of the morning to driving 20 minutes, going to class, and driving home.

Recently, I found another alternative—a Sunday morning barre class at an adult dance studio. But the pace, at present, is a bit too fast for me, and ever since I fell and whacked my knees at the end of October, I need to be careful of putting too much pressure on them. So, I’m hoping to get back to that, and, if the studio schedule shifts, a dance class, too, but I need to build myself up, first.

That is why, last week, after a three-year hiatus, I renewed my membership at a nearby college gym. Al is an alum, which gives me spouse privileges, and this gym has an indoor track. My favorite exercise is walking, but in winter, not so much. The elevated track, which encircles the gym, provides a great alternative. There are also stationary bikes. These, I’m not so crazy about, but I need to just do it, for aerobic exercise and to strengthen my legs.

Armed with my new ID card, I headed over to the gym on Monday afternoon around 2:30. To make the experience more enticing, I brought along a new, inexpensive set of over-the-ear wireless headphones, which I paired with one of my favorite travel podcasts. Off I went on my old routine of a half-mile steady walk around the track, a mile on the stationary bike, followed by another half-mile on the track.

It felt really good. When I got home, the bonus: my brain was clearer, despite the mid-afternoon witching hour.

If I can stick to this three times a week, I’ll be meeting a reasonable goal. More often, so much the better. And since I’m writing it here, I’m holding myself publicly accountable. Stay tuned for progress reports.

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: Tyler Lastovich

Cup of Kindness

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Last week I said farewell to my long-time rheumatologist at Boston Medical Center. Dr. Robert Simms has been my trusted scleroderma expert for 22 years. He’s moving on to semi-retirement in New Hampshire, and I wish him only the best. But I will miss him.

We first met when I participated in a BMC research study on treatments for Raynaud’s. The project was directed by the late Dr. Joseph Korn, who founded BMC’s scleroderma program in 1993. I ended up in the control group, so I did not directly benefit from the study. But I did gain a fledgling relationship with Dr. Simms, who was also involved in the research. Soon, he became my go-to specialist for managing chronic infections in my digital ulcers, and, eventually, my primary rheumatologist.

I also gained some confidence from driving into Boston for my monthly research study check-ins. Up to that point, the idea of an hour’s commute from home seemed like a major undertaking, not to mention the terrible (deservedly so) reputation of Boston drivers and traffic. But after a few trips, I realized I could actually manage it quite well. That aha moment led to my realizing I could commute to Boston for a job, and my eventual dozen-plus-years stint as a marketing and communications director at a small Boston-area college.

I surely have not missed the daily commute for the past decade since I left the college, but I’ve continued to drive into Boston (or take the train, when possible), for a variety of commitments, including my regular, 4-month check-ins with Dr. Simms. Whenever we’d meet, he would always take whatever time I needed to fully discuss any issues, as well as to catch up on life. A leading scleroderma researcher, he gave thoughtful, conservative advice. His referrals to other BMC specialists who also understood this complex disease were consistently excellent. I’ve been blessed to be in very good hands.

I trust that will continue to be the case. He introduced me to his protege, who has been with BMC’s scleroderma program for the past seven years, is deeply immersed in research and care for those of us with this complex disease, and seems equally personable, as well. Relationships, especially with even the best physicians, take time to build mutual trust. I’ve grown older with many of my specialists, baby boomers all. So, I’m that much more grateful that I didn’t have to lift a finger to make a smooth transition with such a key member of my medical team.

As we celebrate the arrival of 2020 at midnight tonight, many around the world will join with friends to sing Auld Lang Syne. The phrase literally means “old long since”—or, for old time’s sake. This New Year’s, I’ll drink a cup of kindness to you, Dr. Simms. Thank you for everything.

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: Ben Wilkins

Mystery Guest

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Right before Thanksgiving one evening, while I was brushing my teeth before going to bed, I noticed an unusual beetle on the bathroom wall. It had long black-and-white antennae and was maybe just under an inch long. Red lights flashed in my head. Those antennae are a distinctive feature of the Asian Longhorned Beetle (ALB), which a few years back devastated tens of thousands of trees in my home town.

Eighteen years ago, I published a book about the demise of my city’s urban forest, and I had predicted the beetle infestation, because we have a preponderance of maple trees in our fair city, which are the ALB’s favorite food. Who was this? Could it be that a dawdling beetle (they are notoriously sluggish) had invaded my home (which would be really, really bad, because it would mean a lot of trees in our neighborhood would have to be removed to prevent further infestation)?

I ran downstairs, found a translucent plastic cup (no small glass jars or anything transparent around), grabbed some index cards and tape, and ran back upstairs. Sure enough, the beetle was still hanging out, and it barely reacted when I scooped it into the cup, then taped the index cards over the top so it couldn’t escape.

Now what? No one in the local state or federal offices that have managed the ALB infestation over the past decade would be available during the holiday weekend. I figured I’d call them the following week—except we then had a major snowstorm. I planned to keep it until I could figure out whom to call.

Meanwhile, the beetle, despite lack of food and oxygen, hung out in the sealed cup on my desk. From time to time, as I worked at my computer, it would climb up the inside of the cup. I’d watch its silhouette try to figure a way out and fall down, only to try to escape once again, like a miniature Sisyphus, condemned (by me) to endlessly repeat the same futile venture over and over. Several times when I thought it had finally died, lying so still, it would rouse after I lifted the cup to the light to see if it was still there.

I began to feel rather guilty. Who was I to trap this hapless creature, which hadn’t done anything other than wander into my bathroom at the wrong time? I didn’t want to kill it outright (although that may have been the kinder alternative), but I also didn’t want to let it go, in case it really was some kind of parasite that could destroy trees. It did not appear to have the shape of an ALB, which is chunky and has striking white spots on a black, hard shell. But what if it were an immature ALB that didn’t yet look that way?

I also began to admire it. This beetle had a lot of determination. It had an extraordinary will to survive. I finally discovered it dead in the bottom of the cup 10 days later. When I tipped out its shriveled remains, I was able to take a closer look. Comparing it to various insects that are related to the ALB,  it seemed to be a cross between a Western Conifer Seed Bug and a White Spotted Pine Sawyer. Was it a new species? A friend who heads the tree replanting effort here in the city gave me the emails of two experts to whom I could send my picture. So I did.

Hoping to hear back from them soon and solve the mystery. I’m also relieved that it doesn’t appear to be a dangerous parasite for our city’s trees. So I’m left to marvel about the will to live. Even in such a small creature, under duress, it would not give up until its body gave out. All the more so for us humans. Though I suspect, if we fail to heed the warnings of our planet’s demise, the beetles will be here long after we are gone.

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: Scott Umstattd

Yellow Roses

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On Monday, Al and I celebrated our 35th wedding anniversary. Actually, we started celebrating over the weekend, with Shabbat blessings in synagogue, a great performance of Pulitzer-nominated The Wolves on Saturday night, delicious Sunday brunch at a local bakery cafe, followed by a tour of the stunning Bauhaus historic home of Walter Gropius and family, a quick visit to special exhibits that deserve more time at the Worcester Art Museum, watching a quirky, funny Albanian film called Two Fingers Honey, and dinner at a cozy neighborhood Italian restaurant. Plus a special dinner on our actual anniversary Monday night. And we have still more plans for next weekend. Nothing like playing tourist in your own backyard with your best friend.

Indeed, we’ve now lived more than half of our lives together—which is astonishing, when I stop to think about it.

How can you really know, when you first marry, whether you’ll be able to keep your relationship fun and surprising, let alone weather all of life’s inevitable storms, and discover that your love for one another will continue to strengthen and flourish?  Honestly, you can’t. Intuition, experience, mutual attraction, a pinch of luck—all are factors, but not determinants. I just know that the first time Al showed up on my doorstep, he surprised me with a dozen yellow tea roses. No one had ever done that before. And the first time he gave me one of his big bear hugs, I felt safe and peaceful.

All these years since, through many, many challenges with health, family, jobs, and more, he’s remained that same steady source of calm, security, optimism, and wonderment. He has the most generous heart of anyone I have ever met, infinite patience for all the mishegas of my scleroderma, and an endearing curiosity and playfulness that can push me out of my comfort zone, but often for the better. Even when he drives me crazy, and I, him, we always manage to work it through and come out stronger.

We’re a lot grayer than those two young adults who smile so blissfully in our wedding portrait. It was good that we didn’t know what lay ahead, starting with the discovery, shortly after returning from our Cape Cod honeymoon, that I had a serious autoimmune disease, with scleroderma being the ultimate diagnosis three years later. All that seems ancient history, now.

The best definition I’ve ever heard of a good marriage or partnership is to be each other’s oasis. Looking back over the past 35 years, I think we’re there. Whatever comes next, I am most grateful.

P.S. This marks my 400th blog post on Living with Scleroderma. How fitting for this to be the subject! To all of you, Dear Readers, thanks for following along.

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.

First Snow

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Immersed in whiteness, once again. Our first snow of the season began Sunday night, and by Monday morning, our world was transformed by billions of fluffy flakes, cloaking secrets beneath a foot’s accumulation. More snow is on the way as I write, looking out my bay window onto yews, their evergreen branches bowed by the weight of last night’s visitation.

The house is warm. Al saved himself a gym workout by shoveling the drive, and the roads are plowed. I rescheduled Tuesday appointments in Boston to avoid an anticipated messy commute as the storm lingers along the coast. I ate oatmeal for breakfast, and there’s last night’s soup for lunch.

Snow forces the world to slow down. Arriving as it did during the Thanksgiving weekend, I know many folks were not thrilled. Our younger daughter was wise enough to return to Philadelphia on Saturday to avoid what became a nightmare of travel woes as the storm approached the Northeast. Across the country, travel conditions were abysmal.

Still, here in my own little world, I’m grateful for the change of pace. We live such hectic lives, with too many demands for attention, angst, and outrage. Snow storms have a way of forcing us to stop, recalibrate, and rethink what is truly essential. Staring at that blank, white canvas that conceals flaws and inspires such wonderment, I am grateful for the peaceful quiet.

A brilliant red cardinal perches on the yew’s bended boughs, in magnificent contrast to white and green. A black-capped chickadee, white breast puffed against the cold, hops amidst the branches, scattering snow. A tufted titmouse scrabbles on my windowsill. I’m glad our bird feeder is full.

Soon enough, life’s realities will crash through. But for this fleeting day, at least, beauty reigns in a pristine world.

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: Robert Thiemann