Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

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

Inner Workings

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An article in Monday’s Washington Post caught my eye: “Earth’s inner core seems to be slowing its spin.” This gave me pause. So, I wondered, does this mean that eventually our planet will stop spinning and we’ll all be flung into outer space in the absence of gravity? Fortunately, a sentence below the headline reassured, “This isn’t the beginning of the end times.” Good to know.

The reporter went on to explain what exactly constitutes the Earth’s inner core (“a superheated ball of iron slightly smaller than the moon”) and various ways that deep-earth scientists measure its spin, and the debate over whether the inner core is actually slowing, or slows and speeds up in cycles, and related implications. One of the most interesting takeaways—all this internal movement that I never knew about plays a key role in establishing the Earth’s magnetic field, which protects us from cosmic radiation. It also influences the length of each day. Which, it turns out, has been increasing by milliseconds for centuries.

How this unseen, spinning molten mass affects life on Earth remains one of the mysteries of our universe. Somehow, this strikes me as totally appropriate. So much of what matters in life is hidden beneath the surface. How well do we really know others, let alone those whom we’re closest to, let alone ourselves?

And so, on this snowy afternoon, as I watch huge flakes drifting by my window, bending evergreen branches in our backyard beneath a plump coat of white, I’m grateful for that mysterious ball of molten iron, whirling well beneath us, ensuring that we won’t be destroyed by cosmic rays. So much seems uncertain in this world, I’ll take it on faith. And a millisecond longer day, too.

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: Javier Miranda

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

Lessons from My African Violet

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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.