Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Falling Back

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On Sunday we made the big shift, setting clocks back an hour to Eastern Standard Time and befuddling our brains in the process. Wait, the sun is nearing the horizon and it’s only four o’clock? Every year we go through this rigamarole, and every year I feel the darkness settle.

Sunlight in November is precious. I used to hate this month when we turn back the clocks, bringing nighttime all the more near. But in recent years I’ve come to appreciate it, despite too-early sunsets and crumbly brown leaves. The light is stark. It casts bare branches silver by day and coats them gold by late afternoon.

Nowhere is November light more beautiful than on Cape Cod, where Al and I spent the past weekend. We walked beaches at sunset, nature preserves at Noon, rediscovered a beloved bookstore frozen in time since the sixties, ate many good meals, and just enjoyed a much needed break. Here are some of my favorite photos from our trip. 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.

Flipper

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It’s been nearly three months since I had #24 extracted from my lower jaw, due to resorption caused by scleroderma. The bone graft is well-healed, and in a couple of weeks I will get the post implanted for my new tooth. Then it’s another three to four months to wait until I get the crown to complete the process.

So, meanwhile, I had a “flipper” made, which is a false tooth on a pink base that snaps in place beneath my tongue. I use it occasionally when I’m on a Zoom call with clients or people I don’t know well, because the gap in my lower jaw looks pretty ridiculous. But thanks to masks for Covid, I don’t really need it when I’m out and about. And when I’m with family or friends, it doesn’t matter.

The question is . . . was it worth it? I had to have it adjusted by my dentist a couple of weeks ago, because it was too loose. She was able to tighten the fit, but she also took another scan of my lower jaw and sent it to a different lab to see if they could improve on the current version (at no cost to me). The flipper makes it a bit harder to speak clearly, but perhaps the new version will be less of an impediment.

Bottom line, though, is that I’ve gotten used to the gap, and I’m not nearly as self-conscious about it as I was, at first. My tongue definitely likes to twist and turn in that open space when I’m thinking. I can eat without any trouble.

On the other hand, February is a long ways away, still, and I have a presentation coming up at the end of this month, on Zoom, of course, that I’d prefer to do without a missing front tooth. The screen view really amplifies the gap. I’ll just have to practice speaking with the flipper in place.

These are trivial problems, of course, in the grand scheme of life. There are many places here in the U.S. and around the world where people cannot afford to keep their teeth as they age, for lack of resources, poor nutrition, and/or limited access to dental services. I know that I’m very fortunate, if I must deal with this chronic issue of resorbing teeth roots, that we have the means to pay for this very expensive process.

(Which is why I sincerely hope that Congress is able to pass popular and long overdue legislation that would add dental benefits to Medicare, despite opposition by the American Dental Association, but I digress.)

And so, like a kid in grammar school, I play with the gap between my teeth, and wait.

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.

Interlude

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Our long weekend in Vermont already seems a long time past, but I have the pictures to prove that we really were there just ten days ago. I’ve never been to Lake Champlain, so we set our sites on Burlington, but also took in the beautiful farmlands and mountains nearby in our travels.

High points of our visit included a sail on the lake (the captain let me take the helm for a while, which is a topic for another post), the Lake Champlain Maritime Museum (where I learned about the very complex history of Benedict Arnold), the Shelburn Museum (yes, that really is a steamboat in the middle of the lawn), Fort Ticonderoga in New York (site of critical Revolutionary War battles), and the Von Trapp Greenhouse and demonstration garden in Waitsfield, Vermont (yes, those Von Trapps). Oh, and the food was truly amazing. 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.

#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

Time Warp

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Years ago, when our daughters were young, we used to vacation every summer on Block Island, off the Rhode Island coast. Back then, it was still affordable to rent a cottage for a week. The island was quaint, quiet, family friendly, with lovely beaches and nature trails to explore.

Thirty some-odd years later, other than real estate prices, which average in the millions of dollars, and very expensive rentals, the island remains in many ways frozen in time, with much open space still protected by the Nature Conservancy. As you approach on the ferry from Point Judith, the waterfront looks almost exactly as it did on our first arrival, when our eldest was barely three years old.

So it was on Sunday, when the four of us made a day trip to Block Island together for the first time in about ten years. There is something immediately calming as the ferry backs into its dock, to see all the familiar old hotels and the flag gaily waving atop the cupola of the National. We had planned a weekend on the Block last summer, and I’d rented a great house and secured our ferry car reservation, when, of course, the pandemic scuttled all that. While we couldn’t do a weekend this year, at least we could make a full day of it.

I’d originally hoped we could rent bikes to ride around to some of our favorite spots, but that was not to be. I haven’t ridden a bike in decades, and when I tried one out, I could not balance—something to do with inner ear issues that have been plaguing me for several years, now. Mopeds, which we’ve always avoided, turned out to be not the best option, either (we did check them out, but decided to pass).

Instead, we found the most affordable alternative: walking and taking taxis. Our first stop was the town beach, where we ate lunch that we’d brought along, rested, swam (Al never misses an opportunity to jump in the waves), and walked the shore. As my eldest said, it’s just relaxing to lie there and listen to the surf and the friendly chatter, not too crowded, not too boisterous. Just families of all kinds, having a good time.

Then we caught a taxi to what’s known as “the Spit.” This is at the northernmost tip, near the North Light, where ocean currents from either side of the island slap together as waves cross paths, foaming and spuming. It’s a long, challenging walk for me from the parking lot over rocks and sand, but well worth the trek. Along the way, we were treated to a pair of fledgling, fluffy grey sea gulls, peeping to their mother, who kept close watch as they wandered near the dunes, and at least eight seals playing in the surf, popping their long black heads above the water before diving gracefully out of sight. We also harvested handfuls of sea glass.

On our taxi ride back into town, our friendly driver, who came to the island 42 years ago for a visit and decided to stay, slowed down to show us a pair of breeding ospreys. Our very first visit to the island in 1991 occurred in the midst of Hurricane Bob, which passed directly over. Turns out our driver was in charge of one of the evacuation sites during the storm, at the medical center. We had found shelter for the day at the only school on the island. So, we reminisced. Far from scaring us off, the hurricane only endeared us more to this special place. It was on that trip, as well, that I realized I was pregnant with our youngest, and Al and I joked giddily about names for the baby starting with B.

Sitting on the top deck of the eight o’clock ferry back to Point Judith, after a delicious fish dinner, the ritual visit to the Ice Cream Place, and noodling about the shops, we said goodbye to the North Light winking over the Spit as the sky turned dusky. Halfway on the hour’s crossing, just above the slate blue mainland, fireworks sparkled.

Magical, once again, if just for a day, to slip back to simpler times, with my dear ones.

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.