Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Candy Heart Wish

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It’s Valentine’s Day, and we could all use a bit more love in this world. While I can’t send you a box of chocolates or a rose bouquet, Dear Reader, if I had my own little candy conversation hearts to share, here is the one message I’d print on them:

BE WELL

Easier said than done, certainly. But it’s a phrase that I’ve been thinking about a lot, especially since the pandemic. I use it to sign most of my email correspondence these days, business and personal.

Being well is more than just a physical state. We don’t necessarily have control over what our bodies do, especially with a disease as complicated as scleroderma and all its associated ailments. Assuming access to good medical care, however (and that’s a big assumption, given health care consolidation and the health insurance mess in the U.S.), it is possible to get treatments and medical support to ease the disease process. It requires recognizing and understanding your personal situation, learning what help is available and whom to trust, being a strong self-advocate, and following through on treatments and protocols.

There is a lot to learn about scleroderma, and a lot to process. My resources page links to leaders in scleroderma research and education, to help you. But the self-advocacy piece is, for me, the most important aspect of dealing with this disease for the past 40 years. I’ve learned to push my doctors for information and explanations, and to share my fears, as well. I’ve also learned to challenge treatment recommendations that don’t make sense, and how to find research that I’ve shared with my medical team to move in a more logical direction. And I make sure that I get all my questions answered in every appointment, regardless of how long it takes. I’m grateful that my medical team respects me for it, as much as I respect them.

In this sense, to BE WELL means that you are not your diagnosis. You are a complex individual with a complicated disease that requires you to stand up for yourself and what you need to remain as healthy, active, and involved in life as you are able. Wellness is as much a state of mind as a physical state. If there is one message that I hope this blog conveys to anyone with scleroderma, newly diagnosed or a veteran like me, it’s about living, not the diagnostic label.

So, happy Valentine’s Day to all. 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.

Image: Laura Briedis

Soup’s On!

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This past weekend here in New England was bitter cold. As in negative teens, even before the windchill factor. Not my kind of weather, not by a long shot. Fortunately, it passed quickly. But winter, regardless of an unwelcome Arctic vortex, is time for soup in our home. So, Dear Reader, here are two wonderful soup recipes I recently discovered from New York Times Cooking, as well as a delicious bean stew:

Golden Leek and Potato Soup by Melissa Clark
The best recipe with leeks and potatoes that I have ever found. I left out the heavy cream, because I don’t do lactose, but it’s fine and rich without.

Roasted Carrot, Parsnip and Potato Soup by Martha Rose Shulman
Recipe calls for a blender, but I just pureed it in my old Cuisinart, and it worked fine. Easy to make.

Rosemary White Beans with Frizzled Onions and Tomato by Melissa Clark
I never knew that onions sauteed until they caramelize are “frizzled,” but whatever you call them, they are yummy! This is also an easy recipe and just so, so good, especially on a cold winter day.

Bon appetite, and if you have links to favorite soup recipes (especially vegetarian) to share, please do!

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:  Dexter McQueen

Open Wide

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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

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.

By the Sea

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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.