Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Open Wide

· · 8 Comments

It’s not easy to open my mouth all the way. Even as the stiffening of the skin on my face has eased significantly over the past 40 years (indeed, I have plenty of wrinkles to prove it), I cannot open wide at visits to the dentist or the doctor. My dentist and hygienist and periodontist are all well-versed in managing the complications of working on my teeth. Still, those visits are never easy.

But there’s another aspect to this issue that’s less obvious. And that involves food. In particular, food in restaurants. Most particularly, any kind of fancy sandwich.

Portions are so overdone in most eateries that a panini or vegiburger can be three inches thick or more. And I simply cannot open wide enough to eat it without making a huge mess. (Holding it in my hands is another matter—as in trying not to get sauce or condiments on my bandages, which can infect my ulcers.)

My compromise, on those occasions when I’m hungering for something hearty in sandwich form, is to eat it with a knife and fork. Which works, for the most part, but it’s not the same as tasting all the ingredients together. And manipulating those utensils through thick breads with my hands is no picnic, either.

One trick I’ve learned: It’s easier to eat a sandwich cut on the diagonal than as two rectangles. That way, I can take smaller bites to start and work my way to the center.

But probably the best solution to the restaurant sandwich dilemma: a good, old-fashioned grilled-cheese-and-tomato sandwich. On our trip in December to the Connecticut shore, I had the pleasure of rediscovering this favorite from childhood. Not too thick, not too sloppy (if I wrap it in a napkin as I eat), and so satisfying.

Have any of you with this same scleroderma issue found other good options? Please share!

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: Lefteris kallergis

Lessons from My African Violet

· · Leave a Comment

For the first time ever, I have managed to nurture an African Violet rather than kill it by drowning its roots or total neglect. In fact, a plant that was given to us last Passover has flourished to the point of blooming, just in time for New Year’s. This is nothing short of a miracle. I guess that tending my bonsai has taught me a thing or two about what my plants actually need.

To wit, a few lessons from my African Violet:

  • Check your hypotheses before acting. If the leaves are rigid, there’s plenty of moisture, even if the leaves curve downward.
  • Trust in Nature’s wisdom. The way the leaves grow protects the soil and helps the plant retain moisture.
  • Find the balance point between too much and too little. My African Violet prefers dappled sunlight, best achieved when shaded by my bonsai (perhaps they commune, too) and watering only when the soil is nearly dry.
  • Be patient. With good care, it will bloom when you least expect it.
  • Appreciate the simple things in life. There is peace and joy to be found there.

Lessons to live by as we enter 2023. Happy New Year, Dear Reader.

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.

By the Sea

· · Leave a Comment

Last Friday marked our 38th wedding anniversary, and instead of the usual dinner out (often a challenge around the holidays) or maybe a concert or a show, we decided to escape for the weekend. I love discovering new places to visit, and we both love the ocean, so this time we ventured to the Connecticut shore, to Niantic, a coastal village within the town of East Lyme.

There we discovered a lovely boardwalk (actually, it’s made of concrete) along the shoreline, a park on a bluff overlooking Niantic Bay, and some great restaurants. Niantic Bay links the Niantic River to Long Island Sound, which (I never realized) is an estuary, an essential ecosystem where fresh water mingles with salt water and tides, providing a significant habitat for a bounty of marine creatures and birds. Along the beach we found many scallop shells, native to the bay, and even some sea glass.

Our inn overlooked a marina, which was a plus for Al, who always loves to check out harbors when we’re by the sea. The view was particularly beautiful at night, under a huge full moon. And a big local attraction was the Book Barn, which houses thousands of used books in many, many nooks and crannies. In fact, when I read about Niantic while researching options, that store was the clincher for me. We spent several hours there browsing and, of course, left with more books to read. (Next time, we’ll remember to clear some shelves and bring books to sell to the store, another benefit.)

On Saturday night, we walked a few blocks from the inn to see the annual Niantic Light Parade, a hometown holiday festival of festooned fire engines, local dance troupes in twinkling costumes, the high school marching band, and more. Pure Americana. See the photo of Kermit the Frog, below, along with some other favorite views.

Here’s to more adventures with my dear Al, and many more happy anniversaries to come!

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.

Namaste

· · Leave a Comment

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

Hats Off

· · 2 Comments

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