Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Winter’s Breath

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The city swept our streets last week, clearing mounds of brown leaves that neighbors had raked or blown into piles along the curb. Then the wind blew and rain fell and more leaves speckled lawns and sidewalks and pavement.

The trees always win, and that’s fine with me. Fallen leaves return nutrients to soil. And I like their sound and earthy smell as I scuffle through them. A child’s pleasure, it’s one of the rewards of forcing myself out the door to take my walk when it’s colder and the sun sets too early. My neighbors wear warm coats and wool hats as they walk their dogs. We all feel winter’s breath.

My fingers, too, are registering the approach of colder weather. The heat is on in our home, and my skin is dry. I’m up to four digital ulcers again, after a really long stretch of only one or two over the summer and well into fall. For now, no infections, although I’ve been on and off antibiotics for months, and my right thumb is not happy with my typing.

This morning I see my dentist, who had a new flipper made for my missing tooth. I’m hoping it will be easier and sturdier than Version One, which I’ll also have her check. Since I got my implant two weeks ago, the flipper no longer fits. I have yet to decide if this false tooth was worth the money, but I also have at least two more months to wait until I can get my crown and have all my teeth again—that is, assuming that the other lower front tooth, which is also resorbing, can stay put for a while longer.

So it goes. Managing my scleroderma is always a process of fine tuning every day. After 40 years, it’s just part of my routine—time consuming, but mostly white noise. I prefer to focus on living.

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: Johannes Plenio

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.

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.

Ulcer Fiends

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It has been pouring, a chilly rain, all day Monday. Fall is definitely here. What amazes me, though, is that I only have one digital ulcer—on my left thumb—that requires a bandage. At this time of year, that’s a minor miracle.

As I’ve written elsewhere, spring is always my worst season for ulcers on my fingers. This summer, however, was a challenge, as well. In the past six months, I have been on antibiotics at least three times, for about a month each time. That’s how long it takes the infection to clear. May was the most challenging month, with multiple fingers competing for attention.

Fortunately, I caught the infections before they became intolerable. One set required two different antibiotics to clear up completely. Perhaps it’s because I just finished the last round of antibiotics only a few weeks ago that my fingers are in better shape right now. Or maybe because I’ve been using medical grade honey to treat them, which both has natural antibiotic properties and also gently debrides dead skin. I was getting concerned about my left thumb, because it appeared that bits of calcium were buried in the ulcer and popping out, impeding its ability to heal. That situation has finally resolved, for now.

Writing about my sole bandaged thumb certainly risks tempting the Ulcer Fiends. They will be back to stage another sneak attack, as is their way. But I hope they’ll give me a break for a few months, at least. Maybe give me time off for meticulous hand care? A pass for layering up with sweaters and hand warmers? A chance to enjoy a little freedom from bandage adhesive? I promise to always use hand sanitizer when I’m out and about and a good skin moisturizer every night.

Are you listening, Ulcer Fiends? Probably not. Until we meet again . . .

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: K. Mitch Hodge

Hardening Off

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On Monday morning, steam clunked through our radiators. The sugar maples on our street are beginning to tinge yellow and orange and shed a few leaves. The days grow shorter. Fall is officially here.

My bonsai has been flourishing all summer, but as temperatures begin to drop, I need to learn how to prepare it for fall and winter. I’ve found some instructions online. Not surprisingly, you begin to limit food and water, still ensuring that it never dries out, but restricting intake. Like all trees, it has to harden off for the colder, darker months of the year here in the Northern Hemisphere. Time to reduce stress from cooling temps and allow it to acclimate.

I feel the approaching cold, too. Still wearing sandals for as long as I can, but starting to acclimate my feet to enclosed shoes again. I’m going through my sweaters, adding more layers as needed. I do not look forward to winter coats and boots and gloves and scarves and hats, but I will make the most of it. I ordered some beautiful Italian wool to sew, and I’m contemplating projects.

Soon the brilliant New England fall foliage will entice, as trees shut down photosynthesis, shed their leaves, and transfer sap to their roots, saving energy for the cold months to come. That, at least, is a gorgeous way to transition to weather that triggers my Raynauds.

And I will adjust, too, as I always do. Carpe diem.

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.