Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Sugarplums

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As I write on Monday morning, snow melts off the roof of my home office, tap-tapping on the sill below. The droplets catch the sun, like streaks of liquid gold. Yew boughs glitter and sway in the light breeze.

Still, it’s quite cold outside, with highs today only in the low ’20s. I’m glad for my renewed gym membership, knowing I can walk and ride the bike despite the frigid air. (And, yes, I hit my goal last week of three workouts!)

Memories come in odd flashes. As I was getting dressed, trying to figure out how many layers I needed, I suddenly recalled a particularly cold day in the second grade. Back then, freezing temps would not have stopped our teachers from sending us outside for recess. As long as the sun was shining, we were on the playground, tossing rocks for hop-scotch, twirling jump ropes, climbing the jungle gym, swinging on swings, playing dodge ball.

But on this particularly cold day, a few friends and I were complaining to the recess monitor, a woman with a dark-brown, Jackie-Kennedy-style coif, scarlet lipstick, and a kind disposition, about the fact that we didn’t want to be outside. She was our favorite monitor, possibly one of the moms, though I don’t recall. “You’re just a bunch of sugarplums,” she teased. “It’s a beautiful, sunny day!”

Our seven-year-old response was to link arms and march around, chanting, “It’s cold, it’s freezing, it’s terrible! It’s cold, it’s freezing, it’s terrible!” She laughed, and we did, too. At some point that seemed like forever (probably after a mere 20 minutes), the bell rang and we gratefully retreated to the warmth of our classroom.

I am, still, indeed, hypersensitive to the cold—though not due to any (implied) weakness of strength or character. Remembering that day, I have to smile, but I’m glad that, in our own childish way, we stood up for ourselves. (Back then, girls had to wear skirts and dresses to school, so our legs were pretty darn cold.)

At the same time, our recess monitor made an important point. Focusing on the negative wasn’t going to help us one bit to stay warm. Running around would have been a better idea, soaking up the sun and generating our own heat. Linking arms, our improvised solution, helped, too.

Some 59 years later, those lessons still shimmer in my mind. Focusing on the negative, overwhelming as the challenges may seem, won’t get us anywhere. Standing up for our truths matters. Linking arms helps.

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: Nine Köpfer

Chopper Talk

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It is most delightful to have my molar back. As in my back right lower jaw, which has been missing that tooth since last April, when a painful, resorbing root sent me to my periodontist for an extraction. No fun, that. Nor has it been a treat to eat with a large gap in my teeth in the grinding department. I’ve had to be extra careful for months to thoroughly chew my food, mostly on the left side, to be sure I can actually swallow safely.

Ah, the joys of scleroderma dental problems. And esophageal dysmotility.

But my new post and crown, inserted on Monday, fits perfectly. It’s an odd feeling. What is that thing in my mouth? Oh, it’s a molar! No longer can my tongue wander into the gap for a little exercise. No longer must I consider whether to mush food with my lower gum on the right or chew on the left. No longer does my right cheek sink in ever-so-slightly over my missing tooth.

Fitting the crown and inserting it proved to be the usual challenge in my tight mouth. A month ago, I had to help the dentist and his assistant insert the molds for my upper and lower jaw, because it was easier for me to figure out the right angle than for them to try without stretching my lips to intolerable tension. Yesterday, it took more lip contortions and some deep breathing on my part as my dentist screwed in the post for the crown—not easy for either of us. But it’s done, and it feels amazing.

Turns out, my dentist told me, he had just needed an extraction himself of one of his front teeth. He has a partial, temporary bridge, so you can’t tell, while he traverses the long process of implants and replacement. I found this encouraging, not only because he uses the same periodontist that he’s sent me to (definitely a good referral), but also because one of the next teeth I may lose due to scleroderma resorption is also a near-front tooth. We’ve been monitoring it for years.

Hopefully, it will continue to take its time. But it’s reassuring to know that, whenever the inevitable comes, I won’t have to look like Alfred E. Newman for months until the procedure is complete. Meanwhile, I will enjoy having a full set of choppers. Carpe diem—or should I say, carpe dente? Maybe not. I don’t want anyone seizing any more of my teeth for as long as I possibly can.

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: Stefan Steinbauer

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

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.

Mercurial

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As I write on Monday, Mercury is making history for us Earthlings by revealing its silhouette while passing between us and the sun. The next Mercury transit won’t occur until 2032. Pretty cool (or hot, depending on which side of the planet we’re talking about—day side temps go up to 800 degrees Fahrenheit, while the dark side can drop to minus 290 F). You can watch a short NASA video of the phenomenon here.

Then there’s the fact that Mercury has been in retrograde for the third time in 2019, from October 31 to November 20. That means the first planet in our solar system appears to go backwards in its orbit, an optical illusion. According to astrologists (as opposed to astronomers), this explains any mishaps you’ve been having lately with technology or relationships, since Mercury, named for the Roman messenger god, governs communications.

Certainly, there’s no rigorous scientific evidence to back up that belief, but Mercury in retrograde sure makes a convenient scapegoat for all the stuff that’s seemed out of whack in my life, of late. These episodes include my recent fall (knee is still healing, although X-rays on Friday reassured me that nothing was broken), the disappearance of my very talented hair stylist (she left her salon and has dropped out of contact, to my great dismay), getting a really nasty cold for the past week (now in remission), and missing a significant typo on a printing job (expensive fix).

What next? Given all the bad news here on Earth these days, it’s easy to get paranoid. Or blame another planet.

Of course, none of my problems are truly earth-shattering. My body can still heal itself, thank goodness, my hair will grow back after the poor haircut I got last week from a less experienced stylist, and the print job was salvaged. The stories we tell ourselves to explain frustrating, annoying, stupid, upsetting events often don’t make much more sense, when held up to the light, than the notion that a planet controls our lives.

Time slips through our fingers like mercury—or quicksilver, if you prefer. Mishaps pass. Misfortunes change. The next time Mercury transits across the sun, I hope all of us will be in a much better place.

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: Hermes and Athena, fresco by Bartholomeus Spranger, circa 1585, Prague Castle, via Wikimedia Commons.