Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

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.

Inhale Exhale

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It’s been three years since I’ve had a complete series of pulmonary function tests. Last year, my new rheumatologist here at home ordered a PFT, but when I had the test done, I quickly realized that this was not the full series I was used to.

So on Monday, in order to have comparable data, I redid the test with the full set: spirometry, which measures how much air you can breath in and quickly exhale; diffusion, which determines how well the oxygen in the air you inhale moves from your lungs into your blood; and body plethysmography, which tests how much air is in your lungs after you inhale deeply, and how much is left after you exhale as much as you can.

These tests are never easy. They have gotten more challenging over four decades, which is to be expected. But my results are not normal. Though I don’t, fortunately, have interstitial lung disease that can result from scleroderma, I do have enough scarring to reduce my lung capacity. Which is why it’s so important to keep track of any changes.

Covid has complicated PFTs. First of all, you need a negative PCR test to even do the exam (can’t risk exhaling Covid droplets and spreading the virus). In addition, appointments are harder to get because of protocols that require test rooms to be vacated for 30 minutes between patients.

When I arrived at the hospital, I was first taken to a room without the plexiglass box (kind of like a phone booth that you sit in) that is required for the plethysmography. I told the respiratory therapist about the lack of a complete series last time, that I needed to be in the box. Fortunately, they were able to switch rooms to the right one after waiting a few more minutes for it to be deemed safe. (This was also helped by the fact that the scheduled patient didn’t show up.)

A second respiratory therapist handled my full set of PFTs. Before we began, she had to don a full blue plastic gown, gloves, two masks, and goggles. Definitely a riskier occupation these days. Then we started. I had to repeat the spirometry quite a few times, because I couldn’t do it without coughing. After several aborted attempts, she had me inhale a dose of Albuterol, which ultimately helped me to complete the test, but gave me the jitters.

The other two tests also required several tries until I could produce consistent results. All told, it took about 45 minutes. And, not surprisingly, my lung capacity over the past three years has declined a few points, down to 82 percent. Some of this is due to aging, but I can also tell, from how much trouble I have completing the tests, that it’s just getting harder with time.

At least it’s done. And I worked most of the Albuterol jitters out of my system by afternoon, though the breathing benefits persisted. Which was a nice side benefit. So it’s done for at least another year, maybe two. My lungs are far from perfect, but also far from limiting me, as long as I stay active and exercise. Still a lot to be grateful for.

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: Kind and Curious

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.

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.

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.