Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Frazzled

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It’s that time of year when everyone is running around trying to finish up last-minute holiday shopping, fretting over holiday menus and meal prep, and stressing over holiday travel, all while Covid once again seems to be nipping at our heels. (PSA: Please get your Covid bivalent booster and flu shot ASAP if you haven’t already!)

Which is why I was grateful to just sit and finish the Times crossword while our Hanukkah candles burned Sunday night, the first night of the eight-day festival. It was peaceful and our home smelled delicious from the latkes Al was frying. And very good they were, too!

I still have a few small gift errands to run. I’ve also, in recent years, shifted from gifts to charitable donations for family members. I ask what they’d like me to support and then make a donation in their names. Everyone feels good, and there’s no risk of the gift being delayed or late, not fitting, or ending up on a shelf. And it’s easy to do.

Still, the frenzy can be contagious, which can be fun if you like all the stimulation. For my inner introvert, however, peaceful moments watching candles burn is more to my liking.

In the midst of all this, whatever your preferred holiday mode, it’s good to know that the Winter Solstice falls on this Wednesday, December 21. Which means that this Thursday, the days will start getting longer again. The difference may be infinitesimal, but in my mind, realizing we’re making the seasonal turn here in the Northern Hemisphere is always a huge.

And with that, I wish you, Dear Reader, a joyful holiday, whatever you celebrate. Let the light shine in.

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.

Moonstruck

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I’ve had an Apple watch for a while, now. I made the investment originally because it includes an ECG app, which has come in quite handy numerous times over the past year-plus, as I’ve been trying to understand my arrhythmia and related issues that finally led to a diagnosis of Type II stress-induced pulmonary hypertension. It helps to rule out atrial fibrillation and provides useful data for my cardiologist.

My watch is useful, too, for tracking exercise, and keeping me aware of when I’m getting too sedentary. As I exercise, I can monitor my heart rate, which is important feedback for me as well as for both my cardiologist and pulmonologist, who have given me some guidelines for my ideal range.

All of this is good and valuable for my health. But here’s the fun part: the watch face. You can choose from a variety of styles, and my latest favorite tracks the phases of the moon throughout the month. I’ve paired this with the Hebrew calendar, which is tied to the lunar cycle, and am now more aware of why Jewish holidays arrive when they do.

The neatest part (I really do geek out on this stuff) is that the moon image on the watch changes phases with each day. As I write on Monday afternoon, it is four days before the full moon, and so the moon on my watch is waxing, with just a sliver of dark along the left edge. So, of course, now I’m comparing it to the moon in the night sky. The image on my wrist is remarkably accurate.

I’ve always found the moon to be a comfort. On a clear December night, it gleams like a diamond on black velvet. Illumined by the hidden sun, it still seems to glow from within, radiating calm. However far I travel from home, it’s right there, guarding the night. Even as it reveals itself and recedes from view over a month’s course, it is ever present, repeating its game of hide and seek over and over, throughout millennia.

So, now I carry the moon on my wrist, a reminder of the constancy of change, my own little oasis of calm in the night.

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: Mason Kimbarovsky

Namaste

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Staying in shape during the pandemic has been, shall we say, a challenge.

The nearby college gym, where I walked an indoor track and rode a stationary bike, shut down to non-students for months in 2020. Even when it reopened for members like me the following year, I didn’t want to risk Covid exposure. Same story for the studio where I took Pilates classes.

I tried some online classes, but that didn’t work. So, I fell back on my favorite form of free exercise, walking my half-hour route around our neighborhood. But, of course, cold weather and rain and ice presented plenty of excuses to cocoon inside.

Other than my daily morning and evening stretches, which have spared me from becoming totally inflexible, I have definitely lost muscle tone and strength. I’ve been somewhat better about taking my walks in good weather, but now that we’re entering winter here in New England, I’m having a harder time pushing myself out the door before it gets dark.

Given my recent diagnosis of Type II stress-induced pulmonary hypertension, however, something had to change. And so, after procrastinating and feeling more creaky as a result, I finally decided to sign up for an easy yoga class to build strength, flexibility, and stress-management skills.

The studio is 15 minutes from home in a lovely, historic carriage house near downtown. As soon as I walked into the space, with its soft lighting and lavender scent, I felt calmer. I introduced myself to the instructor and explained my limitations (can’t flex my wrists, limited range of motion, balance issues, stiff ankles and toes). She was welcoming and immediately helpful, setting me up with a thick yoga mat, knee pad, blanket, and blocks for support, and gave suggestions for how to modify some of the poses. Then, to my surprise, a friend showed up, so I had a buddy.

The hour passed quickly, and the pace was slow enough for my skill level. I’m pretty good at figuring out how to modify poses, although my muscles were definitely trembling with some of the balancing and downward-facing positions. But I made it through. And the most amazing thing—my back felt great afterward, a major bonus.

I returned last week with my younger daughter, who was visiting for the holiday weekend. She has more yoga experience than I do, and she really enjoyed the class, validating my assessment that the instructor is excellent and it’s the right level for me. And, it was great to be able to go together.

So, I’m going to do my best to continue. It feels good to be back in a studio setting with an expert instructor who really cares to help me succeed. It’s also great to realize that I’m not as out of shape as I thought. And finding a much-needed weekly oasis of calm? All the 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: Zoltan Tasi

What I’m Thankful for this Thanksgiving

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For the first time in three years, we’re planning to get together with Al’s cousins for Thanksgiving. While we can never, ever, dismiss Covid as a wily adversary, it does feel as if the pandemic is finally morphing into an endemic, and that we’ll cope with it like the annual flu, with updated vaccines each year.

Now that Al and I are fully vaxxed for Covid and the flu, we’ve been getting out more. This past weekend we attended a wonderful concert of piano and cello compositions by J.S. Bach. We’re no longer worried about eating inside restaurants. I always carry a mask, but have stopped using it unless I’m on mass transit or am in a crowded, enclosed space. Of course, however, I follow rules for masking in health care settings.

So far, so good, thank goodness. I also feel like I need to risk exposure to whatever else is floating about, just so my body produces antibodies on its own. (Though I am not looking for trouble, either. If someone is sneezing or coughing nearby, out comes the mask.)

It is a relief. I am incredibly grateful for all the effective vaccines and anti-viral medications, for free access to same, for health care professionals who have worked so hard under such heavy pressure during the worst of the pandemic, for all those who showed up and solved problems and kept things running.

There is more to be grateful for this holiday. Our election system worked this November, despite so many threats and strains. Our democracy remains under tremendous pressure, and the risks of irreparable harm remain huge. But I am more hopeful than I have been this past year that people of good will, and especially young folks, will rise to the challenges before us.

On a more personal note, I’m grateful for my husband, the happiest man on Earth since he retired a few weeks ago, my two amazing daughters, loving family and good friends, a warm home in this chilly season, excellent physicians, a caring community, and you, Dear Reader, for joining me on my journey with scleroderma and all its twists and turns.

Happy Thanksgiving.

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: nafety_art

Hats Off

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It’s Election Day here in the U.S. I write this with some trepidation. There is so much misinformation, so much distrust, so much othering of each other. It is also an extremely important Midterm election, with a lot at stake.

But I’m not going to dive down that dark rabbit hole, where I’ve been spending all too much time of late. Instead, I want to express my gratitude to all of the citizens around this country who, despite some significant risks to their personal safety (a tragic and pathetic reality), are staffing election sites today. I have several friends here who are poll workers. They do an incredible public service.

From them, I’ve learned about the meticulous process of counting ballots, recording that data, sorting ballots by ward and precinct, and securely delivering the ballots to the City Clerk’s office. It’s a long, rigorous endeavor that takes many, many hours. To these civic-minded volunteers, I say a heartfelt thank you.

We have a lot to be grateful for in this country. It’s up to each and every one of us to make sure we participate by voting—and by respecting the election volunteers who give of their time and effort to ensure a fair and accurate count of those votes. Without their commitment, especially in times like these, we would be in dire straits, indeed.

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: Elliott Stallion