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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Taste

Try, Try Again

Evelyn Herwitz · January 6, 2026 · 2 Comments

Every morning, I try to spend a few minutes meditating. I use an app, which is helpful and instructive. My mind wanders as minds do, but I am, over time, getting more adept at slowing down and focusing on my breath.

This came in very handy on Monday, when I found myself back in my dentist’s chair, because my new crown for my fifth implant came loose last week. No so loose that it popped out, but loose enough that it needed immediate attention. Of course, this all happened on New Year’s Eve, when no one could see me for several days. (Why do these kinds of issues always happen on a Friday evening or right before a long holiday weekend?)

In any case, it took two hours of poking and prodding by my long-time dentist, Dr. K, plus several tries to remove the crown and adjust its size so it would fit properly by his partner, Dr. F (she of the smaller fingers and more delicate touch). Ultimately, that did not work. I had been concerned from the get-go a few weeks ago that the crown was too big, and apparently my instinct was correct, because it never seated properly, which is why it loosened up.

So, now I have to return in a few weeks to redo the dental impressions, and then they will order me a new crown. Why didn’t this one fit—a problem I’ve never encountered before, thankfully? It was very hard to take the digital scans, because of my tight mouth, so that might have been the culprit. (For the repeat, we’ll do it the old fashioned way.) Or, as Dr. K surmised, the manufacturer that he’s worked with for years has changed personnel, and his trusted contact who always did things perfectly is no longer there.

In any case, at least there is a solution that I don’t have to pay more for, and the implant itself (what the crown is screwed into) is still solidly in place (my biggest concern). Everyone thanked me for my patience. I was grateful that I could breathe my way through it.

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: Filip Mishevski

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Filed Under: Body, Mind, Taste, Touch Tagged With: body-mind balance, dental implants, managing chronic disease, resilience, tooth resorption

Crowned

Evelyn Herwitz · December 23, 2025 · 4 Comments

And so, on Monday, I got my new crown for my fifth dental implant. It feels odd to have all my teeth once again, always an adjustment after nine months from extraction to finish, living with a space in my mouth.

As it was last month when my dentist and his team took impressions to make the crown, this was not a fun hour of my day. Lots of stretching my lips to the maximum as he manipulated the post into place and then adjusted the crown itself to fit properly. I had to stop him at one point because the stretching was really extreme, and I needed an break and some Vaseline to lubricate my lips.

But we got through it. My bite feels right again. I can speak more clearly—which surprised me. The tooth in question was the first lower molar on the left side, kind of in the middle of my jaw. Apparently, even a space there, not visible, affects your tongue and how you form words.

When I saw my dental hygienist last week, she checked, as always, the status of my other teeth, several of which have been resorbing slowly for years. One of them has progressed—or, rather, regressed—a bit since she last checked. Not a good sign. It has been somewhat sensitive of late, though fluctuating. I’m just hoping that it and its neighbor, the other troublemaker at present, can hold on for a while longer. I really need a year, at least, between these procedures, just to let my mouth (and pocketbook) recover.

Scleroderma brings many, many complications. Resorbing dental roots doesn’t happen to everyone, but I seem to have hit the jackpot on this particular problem. I am grateful to have excellent dental care. Both my parents had partial dentures as they aged, and I’m glad that’s not the only alternative any more. I just wish dental insurance covered implants, which it doesn’t. Given that my issues are caused by a disease, it seems ridiculous that there isn’t some kind of coverage.

Universal health care, anyone?

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: Akasha Dhage

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Filed Under: Body, Mind, Taste, Touch Tagged With: dental implants, managing chronic disease, resilience, tooth resorption

Open Wider, Please

Evelyn Herwitz · November 25, 2025 · 2 Comments

So, on Monday I made another long drive for a not-so-short appointment, this time to my dentist for the next step in my latest tooth saga, measuring my mouth for the crown for my implant. While I’m grateful that there is a way to keep saving my teeth as I keep losing them to scleroderma-induced root resorption, the process is long, uncomfortable, and not covered by insurance, so it’s no fun and incredibly expensive.

This visit was to make an impression of my teeth, so that the crown can fit properly. I believe the last time I had this done, a few years ago, they were still using that icky goop in a metal tray that they stuck in my mouth (no easy feat). I had to bite down and hold for a few minutes to create a mold. The process always reminded me of my childhood orthodontist’s office, with its shelves of plaster dentures from all of his clients’ mouths, eerily grinning.

Now, however, they can make a digital image of your teeth with a probe. No goop. But the probe is not small and my mouth opening, due to scleroderma, is not big. And as one tech, and then another, did her best to scan my teeth, each had to stretch my lips and cheeks to get the full impression, a definitely-no-fun experience. Finally that first set of images was completed, and I was able to rest my mouth.

Then came my dentist, who had to remove the small metal screw-in cap from the implant and then screw in some kind of post that determined the angle of the new crown. But he was having trouble unscrewing the cap and screwing in the post, because his finger are large and my mouth opening is small. Again, no fun, and he was stressed because he knew I was uncomfortable and didn’t want to hurt me. Finally that stage was finished, and I rested my mouth again.

But the next step was to scan the post with the probe, and first one tech, and then the next, could not get the full image that was required, despite a lot of lip and cheek stretching. They were discussing the possibility of falling back to the goop mold (after all that?!) when my dentist’s partner, a women with small, steady hands, a great sense of humor, and a boatload of patience, came to the rescue. Turns out the post was turned the wrong way, so that’s why the image wasn’t registering. She deftly repositioned it, redid the scan, took out the post, and replaced the cap in a fraction of the time the whole procedure had taken up to this point. “You’re a trooper!” she said, at the end.

If memory serves, she had to come in as the closer last time around, too. Sigh.

Before I left, I set up a payment plan and my next appointment. I’ll have my new tooth before New Year’s, and it will be paid for by my birthday in April. Al and I could have traveled around the world with all the money I’ve had to spend on implants in the past decade-plus. Here’s hoping everything fits, and that I can avoid this whole mishegas for another few years, until the inevitable next tooth bites the dust.

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: Jonathan Borba

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Filed Under: Mind, Taste, Touch Tagged With: dental implants, tooth resorption

Making Waves

Evelyn Herwitz · August 26, 2025 · 4 Comments

On Sunday, Al and I went to one of our favorite places, Block Island, an hour’s ferry ride off the Rhode Island coast. We used to vacation there when our daughters were young. Unlike just about anywhere else I can think of, the island remains a time capsule. Many of the same weathered buildings line the harbor that were there on our first visit 34 years ago. Dunes shift, as they are wont to do, but nearly half the island is protected open space, which has significantly preserved its unique charm. It is a comfort, a respite, a little slice of peace.

At our favorite beach, the sand bore traces of Hurricane Erin, which passed by the island late last week. It was packed down much farther from the shoreline, evidence of a very high tide. We had seen videos of the large traditional ferry (as opposed to high speed) arriving last Wednesday evening, rocking side to side at 45 degree angles as it neared the harbor. By Sunday, there was a bit more chop for our ferry ride than usual, but nothing truly remarkable.

Surf pounded. Little kids ran up to the wash of waves, screamed, and ran back, then raced toward it again. Swimmers flung their arms in the air as they jumped over breakers. Young and old dug moats and built sand castles. Farther up the beach, dogs romped. Paddle balls pocked back and forth. We didn’t find any sea glass, a favorite quest, but I collected a handful of smooth oval rocks of various hues to bring home.

It felt like a normal, relaxing, sunny day at New England’s Atlantic coast, at the end of vacation season. Some public schools have already started, so the crowds were thinner. At colleges and universities across the country, freshman have already arrived for orientation.

Which was the case this past Thursday at Villanova University near Philadelphia, where our younger daughter works. But that first day of freshman orientation was anything but normal.

Toward the end of Thursday afternoon, Al and I were at a celebratory event at our public library, marking the success of the first anniversary of a pilot project to plant a Miyawaki Forest in what was once a section of parking lot, a project I have been very involved in. I was chatting with a student from Rutgers University who had driven up from New Jersey to learn what we had accomplished, when I received a text from our daughter at 4:41:

Mom, I’m currently okay, but I need to let you know there’s an active shooter on campus.

I handed my phone to Al. We left immediately. As soon as we got home, I searched on my computer to see if I could find out any more details. Our daughter, who was barricaded with her boss and another co-worker in the boss’s office, relayed what little information she had—that the shooter may have been at a Mass for new students, that he was now inside the law school at the other side of campus, which was surrounded by law enforcement. That no one knew if anyone had been shot.

I didn’t know what to do. It didn’t feel real. But it was. What do you do when your cherished daughter is hiding with her coworkers from a maniac with an assault rifle, and there is no way you can protect her? I stared at my computer screen. I did some mindless work, just to do something. I texted some friends. I waited for the next text from our daughter.

Then I fell back on my journalism skills and began scouring the internet for whatever I could find that might help her and her coworkers. I checked CNN. No useful information. I found a few more details at the Associated Press, a little at The New York Times. The Philadelphia Inquirer reported that paramedics had arrived, along with police from the Tri-state area. There were video clips of students fleeing, of cop cars with flashing dome lights, of armed police approaching the law school, of snipers on rooftops. There were photos of the university green where freshmen and their parents had gathered in rows of white chairs, now empty, with white programs littered about. It was surreal, and all too numbingly familiar at the same time. Then I found a live news feed from the local ABC affiliate and passed that along. And kept finding reasons to check in. She, too, kept me posted, though news was sparse. We both knew this could go on for hours. We both hoped that the gunman would be caught soon.

About an hour-and-a-half into the crisis, she sent me another text, this time an official notice from Father Peter Donohue, Villanova’s president: There was no shooter. There were no injuries. The whole episode had been a cruel hoax.

Immense relief, all around. We were all so grateful no one was hurt, at least physically. The emotional trauma, though, is real. These are students who have spent all their years in school with active shooter drills and threats. And now, this, on what should have been a triumphant day of beginnings. And to top it off, a similar hoax took place earlier that day at the University of Tennessee in Chattanooga, a second hoax was called into Villanova on Sunday (this one affected a single dorm and was debunked in 40 minutes), and also on Sunday there was a similar incident at the University of South Carolina in Columbia. What kind of person concocts such evil schemes?

Of course, in this day and age in the U.S. of A., none of it topped the headlines. No one killed. Nothing to report. We have become so inured to this insanity and so inundated with political madness that a series of active shooter hoaxes at three universities at the beginning of the academic year merits only stories buried on websites.

Our daughter finally made it home two hours later, after waiting for security to sweep their building to be sure nothing had been missed, after Father Peter gathered the community twice, first to reassure everyone there was no danger, and again to finish the final prayer of the Mass that got interrupted by the crisis. We’ve talked numerous times, since. She is doing as well as anyone could, back to work the next day. Thank God.

Which is one of the main reasons why I really needed a trip to Block Island on Sunday, with its weathered buildings, its familiar beaches, its fresh fish dinners and sweet ice cream cones. I was able to relax for the afternoon, though I found my mind sifting through what had happened. I began to formulate this blog post. I studied myriad footprints, big and little, pressed into the hard-packed sand from hurricane-driven tides, and wondered about those children, screaming in mock fear of the waves. What would become of them in their journeys through school?

I wish we really could step back into the more innocent time the island conjures. But we can’t. We are here. We live in a dangerous, violent world, at a crossroads in the history of our nation’s democracy. It feels overwhelming to me. Then I draw on my experience these past few years, helping to create a dense, small forest next to our public library that promises to be an innovate way to ease summer’s intensifying heat in congested neighborhoods with no trees.

Our community came together to plant that forest. We had no idea when we embarked on this project that it would draw so much interest and inspire students and other communities to learn more and plant more, too. It’s essential to remember—I keep reminding myself—that most people in this world are good, honest, peace-loving people who want to nurture their corner of this planet. Even the smallest act of joining together to solve one problem for the betterment of others can create ripples that grow into waves of possibilities for the greater good. Doing my best to maintain that focus, imagine what could be, and work toward it one small step at a time, rather than get mired in all the darkness, is my only way forward.

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.

 

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: anxiety, resilience, stress, vacation

How I Spent My Spring Vacation

Evelyn Herwitz · June 3, 2025 · 6 Comments

I’m back home since last Tuesday night, back on East Coast time, and nearly caught up on sleep, after an intensive 12-day journey with Al to Germany. As is my way, I packed a lot into our itinerary, based in part on more research for Novel 2, which is set in Weimar Germany, and in part on things I’ve always wondered about and wanted to visit, and in part on catching up with good friends there.

We flew direct to Frankfurt-am-Main, Germany’s financial center, and used it as a hub for day trips by train to various points of interest, including Kassel, home of the Brothers Grimm for most of their adult lives; the Rhine River Valley, speckled by castles, hillside vineyards, and lovely towns; Worms (pronounced Vorms, rhymes with forms), which was a famed center of Jewish intellectual life in the Middle Ages and is home to the oldest Jewish cemetery in Europe; and Heidelberg, a renowned university city and site of castle ruins.

From Frankfurt, we took the 4-hour high speed train to Berlin, and had a guided tour of the Schöneberg district, where my mother grew up around the corner from Albert Einstein, and the location of JFK’s famous “Ich bin ein Berliner” speech in 1963; visited a variety of spectacular museums, where we saw art by Paul Klee and Gerhardt Richter; as well as learned about life in East Berlin and under the surveillance of the Stasi secret police. We also visited a wonderful puppet museum with an extraordinary collection and curators who filled me in on some history I’d been seeking.

On top of that, we had a lovely and meaningful visit with our friends, who treated us to delicious meals and took us to another beautiful and historic Jewish cemetery, the largest in Europe. Last Monday we took the train back to Frankfurt, stayed overnight, and then flew home. I was exhausted, but it was well worth it. And that’s the very short version of our travels.

What do all these things have in common? I’m thinking a lot about German folklore and how it informed culture and society in the 1930s, as well as the heritage of German Jewish communities. I’m also thinking a lot about art and censorship, which are central to my novel. And I’ve always wondered about castles on the Rhine. Fun fact: they were built by princes who wanted to collect tolls from ships traveling up and down the river—the very definition of robber barons.

I’m still processing all that we explored. I will be thinking about this trip for a long time. Grateful we could go and return home safely. Here are just a few pics of what we saw. Enjoy!

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: travel, vacation

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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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