Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Sympatico

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It definitely feels like fall this week in Massachusetts. A few days ago, it felt like summer. But now the trees are really starting to change colors as the days grow shorter and temperatures hover in the 50s.

I find myself feeling more tired, which always surprises me when cooler temperatures finally settle in. It’s like my body senses the approach of winter and wants to prepare for hybernation. My hands start turning blue more often, and I just want a nap.

My bonsai is responding to the seasonal shift, as well. When I set it out on Sunday to catch the sun, its leaves soon drooped in response to wind and chillier air. A Brazilian Rain Tree, it prefers tropical weather and humidity, but can still flourish in the Northeast, just not when temps drop below 45°F.  I’ve been bringing it inside at night, but now it seems to be imploring me to keep it in the kitchen when temps drops below about 60°F.

We are definitely sympatico.

I brought its little table inside, too, so it can enjoy the midday sunshine through the south-facing sliding glass door off our back deck. Now I just need to get a tray and fill it with gravel and a little water, to place underneath its pot. Evaporating water will help to keep it humidified when we turn on the heat.

I know it may lose all its beautiful foliage at some point this fall. So far, however, it remains emerald green and continues to form new leaves and stalks. Though I’ve cut back on watering it daily, it keeps growing.

Even as my fingers turn blue, I guess I may have a green thumb, after all.

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.

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.

Booster

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Last Thursday afternoon, on my rheumatologist’s recommendation, I got my third Moderna vaccination. CDC guidance has been confusing of late regarding boosters, but for people who are immunocompromised, the advice has been fairly consistent to get a third shot. Just who qualifies as immunocompromised, however, is also subject to interpretation.

People who are receiving active cancer treatments, have received organ transplants, stem cell transplants, have advanced or untreated HIV infections, or are receiving high-dose corticosteroids or other drugs that suppress the immune system are advised to get the third shot. In general, the CDC recommends that anyone “moderately or severely immunocompromised” get the booster now, because of Delta’s high contagiousness and questions about whether immunocompomised people have been able to mount a strong enough response to the first two doses.

Still, scleroderma was never on the initial list of conditions for the first round of vaccines back in the winter. So I wasn’t sure what would happen when I went to my local pharmacy to get my booster.

The first obstacle I ran into, however, wasn’t about whether I qualified. It was about what shots were offered. My local Walgreens, where I get all my prescriptions, only gives out Pfizer, as it turns out. So I went home and went online to see where Moderna shots were offered. The pharmacy at my favorite supermarket was listed as giving all three—Pfizer, Moderna, and Johnson & Johnson. But when I got there, that day they were just giving J&J shots. So I called another Walgreens that my local store had mentioned, and, indeed, they had Moderna and were giving boosters.

Three’s a charm. Not only did they have the right vaccine for me, but also, their consent form had a category of “other” autoimmune diseases, so I could honestly check that box. I had told them that my rheumatologist recommended the booster, which helped, too.

As for the experience of getting my third shot, I did not have as strong a reaction as I did the second time: no Covid rash on my arm, less fatigue. I was able to get stuff done that evening and next day. However, my joints flared, once again, and my Reynaud’s went into high gear. My rheumatologist had told me to try to avoid analgesics, like ibuprofen, because there are some indications that they can suppress the immune response in the first few days. I waited as long as I could, but I really needed the meds for my joints or I wasn’t going to get any sleep.

By Saturday morning, I felt like myself again. It’s now been almost two weeks, and I’m feeling more confident that I’ve done what I could to protect myself and those around me. I still wear a mask everywhere when I am indoors or in an outdoor crowd. I suspect we’ll all need to be doing that for some time to come.

I hope you, too, Dear Reader, consult your specialists and determine when and if it makes sense for you to get a booster—or your initial dose(s), if you have not already. Together, we can beat this terrible pandemic. Together, we must.

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: Ivan Diaz

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.