Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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

Random Act of Kindness

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Last Friday, in-between a routine echocardiogram and an appointment with my rheumatologist at Boston Medical Center, I decided to get a bite to eat. It was around 11:00, not quite lunchtime, but I knew I wouldn’t get home until mid-afternoon. Better to tackle the hour-long drive and run errands on a full stomach than get worn out before I could sit down at my own kitchen table.

I found a nice local diner, just a short (very cold) walk from the BMC campus, warmed up with a cup of tea that steamed my glasses, and enjoyed a hearty brunch of scrambled eggs, an English muffin and home fries. The diner was cozy and crowded. I had never been there before.

There was ample time to walk back for my second appointment when I asked the waitress for my check. A few minutes later, she returned empty-handed. “Someone paid for your meal,” she said. “You don’t owe anything.”

“How is that possible?” I asked, astonished. “I don’t know anyone here!”

She shrugged and smiled and suggested that Santa had delivered a gift. I thanked her, and sat there, marveling. There was no indication that this generous soul had paid for everyone. Why single me out? Who could it be? Fortunately, I had some cash in my wallet, so I gave my waitress a good tip. It was the least I could think of in the moment.

Walking back to BMC in bright sunlight, I pondered what had just happen. I’d heard of gestures like this, certainly, but never been the beneficiary. The cynical voice in my head wondered if it was some kind of social psychology experiment, to see how people responded to such an anonymous gift. But it didn’t really matter. Someone chose to do me a kindness. How lovely! And it gave me a real boost that lasted all weekend.

As 2019 draws to a close, a year of so much dire news, it’s uplifting to remember that there are many good people out there, who never get headlines, ushering light into the world. With Hanukkah and Christmas coinciding this week, we can use all the light we can find—and bring to others.

In that spirit, whatever your tradition, best wishes to you and yours for the holidays!

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: Gaelle Marcel

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.

In a Word

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Nearly 40 years ago, when I first experienced symptoms of what I later learned was scleroderma, I found myself exhausted. There were plenty of logical explanations. I was in entrepreneurial mode, trying to launch a statewide news service for four NPR affiliates, and running myself ragged. I wasn’t sleeping well. My first marriage had just broken up, and I was struggling with a deep sense of failure. My gut was reacting to all the stress, and I was losing weight.

Fortunately, I had found a strong community in a local synagogue, and the mother of one of my friends offered to take me in and help me get back on my feet. She was a blunt woman, but she was also kind and a good cook, and after a week in her home, I began to regain my strength. And she told me this: It doesn’t take long to wear yourself down, but it takes a long time to build yourself back up again.

I have thought of those wise words many times since.

Of all the things I’m grateful for this Thanksgiving, I’m particularly grateful that in America we can express ourselves freely. But that freedom comes with profound responsibility. Words are powerful. What we say to each other and how we say it matters. It has become alarmingly clear that words can all too easily destroy what is best about our country, and it will take a long time to restore what we’ve already lost.

I hope the conversation around your dinner table is replete with all the respect and empathy so absent in our national dialogue. Each of us needs to be heard, but each needs to listen, really listen, too. That’s where true healing begins. Happy Thanksgiving.

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 Webb