Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Be Prepared

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Many years ago, I was a Girl Scout. That’s 15-year-old me in the middle, with the long pigtails and sunglasses, on a troop trip to D.C. in 1969. (And no, the Senior scout to my right is not smoking a real cigarette!) All that I vaguely recall about that trip, back in the day when Girl Scouts wore real uniforms and I was a Cadette scout, was that it was incredibly hot and humid. I’m sure we had fun. By that fall, however, I decided I’d had enough of scouting, though I don’t think it had to do with the trip. I just wasn’t interested anymo0re.

But I learned a lot in the half-dozen years that I participated, first as a Brownie and Girl Scout in elementary school (my mom was the troop leader), and then as a Cadette as a young teen. I gained some important life skills, including how to sew my own clothes, how to build a campfire, how to camp in a snowstorm, how to run a patrol (team), and how to plan. Our patrol in elementary school was called the Martians, and we definitely put on the very best skits of the entire Troop 151.

“Be Prepared” is, of course, the Girl Scout’s motto—or, at least, it was back in the day. Same for the Boy Scouts. And, notwithstanding the (not PC) Tom Lehrer parody of 1953, that motto is very much a worthy goal.

Which is why (here comes the thematic hairpin turn) I was really glad to discover last week that the new Covid vaccine was available locally, because we are soon going to be traveling again. Al and I both were able to get the jab, which did not hurt at all. I began to feel the vaccine moving through my system within minutes, however, and was a bit achy and tired for 24 hours. And that was it. This version was by Pfizer, which tends to be easier for my body to handle.

Covid is still swirling around us, and the uptick in cases is not to be dismissed. We had already gotten Paxlovid to take along, just in case either of us got sick on our trip, (once a Girl Scout, always a Girl Scout) and I’ll still pack that along with some Covid tests, but I am much less concerned about that potential problem now. I hope my experience encourages you, Dear Reader, to get your own updated Covid vaccine sooner than later. Well worth avoiding the virus, especially for those of us with compromised immune systems.

I’ll be offline for much of September, back by early October with tales of our adventures. 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.

Once in a Blue Moon

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If the skies are clear tonight where you live, you’ll have a chance to see an unusual astronomical phenomenon: a full moon for the second time in one calendar month. It’s called a blue moon, although the moon won’t actually look blue. More like a light tan. Still, the rare occurrence—which happens only every two or three years—is a metaphor for anything that happens, well, once in a blue moon.

Not only is this a blue moon, it’s a seasonal blue moon, because there will be four, not the usual three full moons during one season. It’s like getting an extra scoop of ice cream for free.

But wait, there’s more! This blue moon is even more special, because it’s also a supermoon, which appears to be larger than normal, because the moon is closer to the Earth than normal.

Super blue moons are even rarer than seasonal blue moons. According to NASA, the next convergence of a blue moon and a supermoon  won’t happen until January 2037.

The peak convergence was last night, Monday, but the phenomenon will still be visible to the naked eye through early Wednesday morning.

All of which is to say, in addition to record heat, crazy extreme weather, and more than enough to worry about, Nature also brings us some beautiful, unexpected gifts. Savor the magic.

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: Kian Lem

A Pain in the Back

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Last Thursday evening I went to a yoga class at a nice studio not too far from home. I’ve taken a fundamentals class there several times over the summer to try to improve strength and flexibility, with mixed success. But I had one more class left on my paid series, and I wanted to use it up.

Everything was going well for most of the hour-long class, with a nice meditation, sun salutations to warm up, cat-cows, child’s pose (I cannot do a downward dog because of the pressure it puts on my hands and wrists, so this is a substitution per one of the instructors), and a warrior two pose. Then our instructor had us move into a triangle pose, which is essentially a twisting side bend with your legs forming two legs of the triangle, one arm down next to your forward leg and the other arm raised to the sky. It was hard, and I couldn’t hold it while she went around the room answering questions. So I stood up.

And immediately realized I had injured my lower back. I was in considerable pain, to the point where it was very uncomfortable to walk back to my car. I chose not to say anything. I just wanted to get home and lie down.

Heat, ibuprofin, Tylenol, Aspercream, you name it, I tried it. By midday Friday I decided I needed to check with my PCP, and the geriatrics team recommended getting a lower back X-ray to rule out a stress fracture. I was able to drive to the clinic and carefully walk to the radiation department. The tech was sympathetic and I got through the procedure. Supposedly, it would be reviewed within a couple of hours, but no report appeared in my electronic medical record by the end of the day.

However, by Friday evening I was able to stand for about a half hour and help prepare dinner, so that was encouraging. By Saturday morning, I was feeling more mobile, though I rested a lot that morning and later afternoon. By Sunday, I was able to do my regular set of stretching exercises and drive into Boston to have a planned lunch with a friend and see my eldest daughter.

As I write on Monday, I still have some discomfort, but am basically back to my normal mobility. And the X-ray report came back negative for a stress fracture, though there are some age-related issues with osteopenia and thinning of cartilage between spinal disks. That would explain some of the low level discomfort I’ve had for the past few years. But thank goodness it wasn’t anything more serious.

And yet. For those few days when my mobility was really hindered, I felt quite vulnerable. The experience drove home the obvious fact that a strong back is essential for everything we do. I’ve never had back problems up to now, so I’ve taken my spinal health for granted. No longer. I’m not risking yoga again, but hope to get back to Pilates, which is excellent for strengthening core muscles and back support, this fall.

Meanwhile, I’ll keep tending my back and stretching and walking, for as long as I’m able.

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: Point Normal

What I Have in Common with Simone Biles

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My favorite unit in high school gym class was gymnastics. Not that I was any good at it. Decked out in our light-blue gym uniforms (one-piece cotton bloomers with a snap front that were the antithesis of style), I would attempt a simple vault over the horse, try to calm my fear of heights as I walked on the balance beam (in sneakers!), and swing from the uneven bars. The cool girls could do a penny drop. Not I.

Even still, I enjoyed the challenge (except the beam). Maybe because I was just competing against myself and not in my usual role as the weak link in a team sport. Maybe because it made me feel strong. My one big accomplishment in my senior year was clambering up a thick rope to the high gym ceiling, something I never expected to be able to do.

Maybe that’s why gymnastics has always been my favorite part of the Summer Olympics, especially watching young women achieve seemingly impossible feats of strength and coordination. Even if I could never do that myself, I thrill at their achievements. This year was supercharged by Simone Biles’s triumphant return. What a marvel to behold!

Much as I admire Biles for her extraordinary athleticism, I admire her all the more from what I learned in a profile in The New York Times: that Biles and I share a particular love—of turtles. As a young athlete, she went at her own, unique pace to build her repertoire, not caving to unrealistic goals set by coaches. She knew herself and what she needed to learn and grow, in her own time. Her mother, Nellie, called Simone her “little turtle.” According to the article, Nellie used to tell her, “Don’t worry that you are moving slowly. Just be sure of what direction you are going in.” Before every meet, she would give Simone a tiny porcelain turtle. Others picked up on the theme, and she now has a huge collection.

I, too, have a collection of all kinds of turtle figurines. This started when I was a marketing director at a small New England college. I used to give little plastic turtles to my staff as a reminder to take the time to do the job right, rather than rushing and having to spend twice as long fixing it. This guidance was deeply appreciated, especially in a pressure cooker environment rife with unrealistic demands.

Over the years, family and friends have added to my collection, which resides on the bookcase in my home office. I am known for fawning over turtles in their natural habitats. I remind myself that often the best way to solve a problem is to approach it as a turtle, especially when it comes to figuring out the plot in the novel that is bedeviling me at present. Or managing yet another digital ulcer. Turtles have become my go-to metaphor for resisting social and cultural pressure to always be doing, busy, rushing, as a measure of self-worth and accomplishment.

Biles astounds us with her superhuman athleticism, but she became a GOAT (greatest of all time) gymnast by taking her time to get there, including her difficult and courageous decision three years ago to drop out of the Tokyo Olympics when she knew she needed to stop. She draws on her own mental health struggles and early years in foster care to promote the non-profit Friends of the Children, which supports mentors of foster children and other kids at-risk, at an annual international gymnastics invitational in Houston. Sales of a toy mascot help to raise money for the non-profit.

It is, of course, a turtle.

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.

Olympic Feats

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For the past few evenings, I’ve been watching the Paris Olympics the old fashioned way, on NBC. I refuse to purchase yet another streaming service, even as Peacock has the comprehensive schedule and streams real time and recorded events. Though I must admit, it’s tempting to gain access to real competitions instead of a curated summary that excessively favors coverage of US athletes and is interrupted every few minutes with commercials awash in treacle.

On the plus side, all those commercials give me ample opportunities to do my bedtime routine without missing anything.

Mostly, however, I’m in awe of what these amazing athletes can accomplish. And a bit envious of their perfect, young, strong bodies. What would it feel like to swim like Torre Huske and Gretchen Walsh, who clinched gold and silver on Sunday in the Women’s 100m Butterfly, finishing within split seconds of each other? Or to twirl in the air like the gravity-defying gymnast Simone Biles?

I was never much of an athlete. Correction: I was never an athlete, nor did I aspire to be one. I just wasn’t that coordinated or strong as a kid, and I found sports competitions stressful. Only once can I recall the thrill of winning a swimming race in the lake by our house. We were at some kind of summer neighborhood party, and I beat out all the other preteens in a race to the raft and back. I won a little red and purple paper flower award, and it felt great. But not great enough to get serious about swimming or any other form of athletic competition.

Sometimes I wonder, had I been more rigorous about exercising in my youth, would I have been able to avoid scleroderma. Not that there is any known connection between exercise and this strange disease. And athleticism is no guarantee of good health, though it certainly helps. I was very moved by the backstory of US gymnast Suni Lee, who has overcome debilitating kidney disease to compete in Paris. Even more than whatever medals she is likely to win for Team USA (she was all-around women’s gymnastics champion at the 2021 Tokyo Olympics), I think she already deserves a gold medal for her incredible grit. Same goes for Simone Biles, who confronted her deepest fears and insecurities about competing after she withdrew from the Tokyo Olympics four years ago, to once again dazzle the world with her truly extraordinary strength, coordination, and grace.

And that’s really the point. I have never been athletic—by choice and by genetics—and scleroderma certainly has put real limits on what my body can accomplish. But within those limits, there is still a lot that I can accomplish. It’s all about not giving up in the face of a daunting disease. It’s all about where I choose to place my focus—mental, emotional, spiritual, and, yes, even physical. Olympic feats are not limited to the Olympics.

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.