Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Autumnal Perfection

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Sunday was one of those perfect, crisp fall days here in Massachusetts, just right for a good walk. So I took advantage of the weather to follow the trail around a drumlin nearby, one of the hidden gems of our city’s parks. Within a few minutes, you can immerse yourself in woodland. Even as car horns and swooshing traffic penetrate, the sounds of the city become more muffled the farther you climb the hill. My personal challenge is to make it all the way up the circular trail without stopping—good aerobic exercise. Trees along the way to the park, up the hill and down, provided inspiration. I hope you enjoy the view!

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.

Course Correction

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Our long August weekend in Burlington, Vermont, already seems like months ago. But I’ve been thinking about one of our adventures, a two-hour sailboat cruise on Lake Champlain, ever since.

It was Friday afternoon, hot, humid, perfect weather to get out on the water. A family of four sat at the bow, beneath the jib, and Al and I sat aft, behind the mainsail. When I mentioned to our captain how much I love sailboats, he said, “Would you like to sail it?”

Now, it’s been about 40 years since I’ve taken sailing lessons, but I figured he would be right there, so I agreed. And that is how I found myself taking the helm, gripping the stainless steel wheel, and wondering what exactly I had gotten myself into. “Relax,” said the captain. Sure, I thought, easy for you to say, but I really don’t want to capsize our sailboat with that nice young family up front.

He told me to turn the wheel back and forth to see what happened. As I moved the rudder, the boat shifted direction slightly to left or right, with a momentary delay. It was as if wind and current had to negotiate a bit before our direction was determined. For the next twenty minutes or so, I did my best to sail us safely out of the harbor between the breakwaters and into the huge lake, focused on a cleft between two mountains on the horizon, as our captain instructed.

It was not easy. Wind and current competed constantly, and I had to make many small adjustments of the rudder to keep us on course. To me, it looked like we were zigging and zagging through the water, but the family at the bow seemed to be enjoying themselves, and the captain was not in the least concerned. Al just enjoyed being along for the ride.

When I handed back the helm, the captain attached the wheel to some cables connected to an internal computer, set the course, and the boat effectively sailed itself. But the computer constantly adjusted the wheel back and forth, just as I had, to balance out the tug of current and push of wind. So that made me feel better.

Staying on course is never a straight line.

Every moment of every day, we make choices. We’re buffeted by many options, distractions, demands on our time and attention. It’s easy to go on autopilot in our daily routines, following the familiar course of waking, grooming, meals, work, school, chores, homework, childcare, exercise perhaps, maybe pursuing a hobby or reading a book, Zooming, or just collapsing in front of the TV or computer before bedtime.

As I was sailing on Lake Champlain, gripping the helm, I could feel the tug and pull of water below and wind above. I was acutely aware of how my hands on the wheel controlled the rudder and direction of the boat, how turning it a little too far to left or right would steer us off course. I had to pay attention.

It was not relaxing. And I couldn’t maintain that level of focus for more than twenty minutes on a day when I wanted to just be on vacation. I don’t think it’s realistic for anyone to be fully alert for every waking minute—or even healthy, for that matter. Witness the burnout of our front line workers battling Covid, 24/7, throughout the pandemic, who so desperately need rest and recuperation.

But I do think there is a lot to be said for being more mindful of our actions, how small actions can add up to big ones with significant consequences, for better or worse. For me, and for Jews around the world, today is Rosh Hashanah, the Jewish New Year, a time for introspection about the year past and reflection about how to do better going forward.

It’s been a tough year, navigating through the pandemic, which seems endless. I’m setting my sights on trying to be more conscious of the pushes and pulls that can throw me off, the ways words and worries steer and jostle my actions and those whose lives I touch, and how, with a little more care, a little more attention, I can chart a better course—not only for myself, but for others, known and not yet known.

Sail on, Dear Reader, sail strong.

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.

Take a Breath

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Monday was the first day I almost forgot to water my bonsai tree since I brought it home in June. I’ve been doing really well tending it. But Monday has been crazy. As I write on Monday afternoon, I have been on hold with U-Haul for the second time today, now for nearly an hour. Finally reached a customer service rep regarding my elder daughter’s truck reservation for her move this week, to adjust some important details that got changed at the last minute, succeeded with one issue, only to be put on hold again for the second issue.

Her job does not allow her the time to be on hold with U-Haul for over an hour—let alone, twice in one day. And August 31-September 1 is a very busy moving day in Massachusetts.

This is ridiculous.

Earlier on Monday, I chaired a detail-laden meeting for our synagogue, reviewing all the minutia for our upcoming Rosh Hashanah services next week, which have required many last-minute adjustments due to the pandemic, wrote up all the minutes, sent them out, updated important information on the synagogue website, and wrote an email for the congregation re same.

Then I ate lunch and realized I’d forgotten about my bonsai. Fortunately, its pebbly soil was still moist, so no harm done. Now it sits happily outside in the humid afternoon, well watered.

Back at my computer, I called U-Haul, for the second time. The first time, this morning, before the synagogue Zoom meeting, took about a half-hour, and confirmed pick-up of the truck. Then I had to finalize drop-off. About an hour into that call, a rep answered and was very helpful. (He was in North Dakota. Told me, even there, they have a shortage of vehicles right now, which is unusual. Thank goodness I reserved the truck earlier this month!) But he needed to hand me off to a second rep. They assure me that someone will be with me as soon as possible. The recording is repeatedly broken up by a ringing phone that no one answers.

I’m good at multi-tasking, and my years as a journalist taught me how to write while noise is blasting in the background. Still, this is both frustrating and annoying, to say the least.

At some point this will get resolved. Hopefully before I have to go to bed. . . .

Okay, finally got a human to speak to—who, of course, has no idea about what the first guy said and has different info than he suggested. (She was in Connecticut.) But at least we have final instructions. I hope.

Watering my bonsai was the one moment of calm all day.

Take a breath.

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.

Time for a Break

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No big travel plans for this summer, once again. But we’re trying to make the most of day trips. Two weekends ago, we spent a beautiful day in Rockport, Massachusetts. I hope you enjoy the view.

I’ll be taking a break from this blog next week, back on August 24. I hope you’re finding time to savor good weather, travel safely, and relax, too. Be well.

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.

#24

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More than two years have passed since I last had a tooth extracted due to a complication of scleroderma that causes my immune system to attack the roots of my teeth. But, once again, another one had to go. This time, it was my lower front left tooth, known to dentists as #24.

I’ve had two implants so far. My dental team and I have been tracking another four teeth at risk. At my last cleaning, my hygienist noticed that 24 looked pink at the bottom, indicating the tooth was hollowing out and blood was seeping inside. An X-ray confirmed the extent of the resorption.

At that point, surprisingly, I was not experiencing any nerve pain, given the damage. A consult with my periodontist left timing of the inevitable procedure up to me. I also saw my dentist to discuss the situation, have a new panorama X-ray taken, and figure out where things stood. The other three teeth have not progressed as far, fortunately, so I’ll just continue to deal with them one at a time. But after about a month, I realized 24 was getting more sensitive. I heal faster in summer, so it was time to take care of it.

And so it was, last Wednesday, that I found myself, once again, slightly upside down in my periodontist’s exam chair, trying not to get anxious as I awaited the first shot of Novocaine. Fortunately, the topical anesthetic that preceded the shots worked expeditiously, and the Novocaine took hold quickly, too, so I was spared much discomfort. But I still hate those needles.

Since the tooth was up front, the procedure was somewhat easier than for the past two molars. Just one root instead of multiples, and no overstretching my mouth to get in the back, which is very uncomfortable. But as has been the case before, the ligaments that form a sock around the roots, making it easier to pull, were dried up, so the root was fused to my jaw and had to be drilled out.

The whole process took about an hour, half the time for previous molars. I did my best to stay in the moment, breathe, and listen to Vivaldi streaming on the music system. I recognized one of the pieces that I used to play on my violin in high school. It was a relief when my periodontist finished the last stitch and I could get out of that chair.

Residual pain, once the Novocaine wore off, was, thankfully, minimal and manageable with over-the-counter pain meds. Swelling subsided within 48 hours, thanks to a lot of icing that first day. I can eat without much trouble.

The one mistake I made was assuming the missing tooth, given that is was in my lower jaw, would not be noticeable. Alas, I look like Alfred E. Neuman, except on the bottom. So, I’m going to have a “flipper” made, which is a false tooth that is removed when you eat. Given that this whole procedure, from extraction to implant to crown, will cost about $9,000, with no insurance coverage (outrageous!), the additional $350 for the flipper seemed a drop in the bucket. I really don’t want to live with a gap in my teeth for nine months until I get the crown. I’m not letting scleroderma get the better of how I look and feel about my appearance. Some might call it vanity, but I call it self-esteem.

And there’s a silver lining. Once again, by charging payments on my travel credit card, which we always pay off at month’s end, I’ll at least get more points for whenever we can finally take another extended vacation safely, without fear of Covid complications. Hoping that’ll be at least by next April, when 24 is fully replaced.

Sooner would be better.

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: Photo courtesy of Gratisography