Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Crossroads

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I find it difficult to write about anything, given the weekend’s terrible news here in the U.S. So I share with you an excerpt from President Biden’s wise words Sunday night. Whatever your politics, we all need to take this to heart. Period.

Tonight, I want to speak to what we do know: A former president was shot. An American citizen killed while simply exercising his freedom to support the candidate of his choosing.

We cannot—we must not go down this road in America. We’ve traveled it before throughout our history. Violence has never been the answer, whether it’s with members of Congress in both parties being targeted in the shot, or a violent mob attacking the Capitol on January 6th, or a brutal attack on the spouse of former Speaker of the House Nancy Pelosi, or information and intimidation on election officials, or the kidnapping plot against a sitting governor, or an attempted assassination on Donald Trump.

There is no place in America for this kind of violence or for any violence ever. Period. No exceptions. We can’t allow this violence to be normalized. . . .

Disagreement is inevitable in American democracy. It’s part of human nature. But politics must never be a literal battlefield and, God forbid, a killing field.

I believe politics ought to be an arena for peaceful debate, to pursue justice, to make decisions guided by the Declaration of Independence and our Constitution. We stand for an America not of extremism and fury but of decency and grace.

All of us now face a time of testing as the election approaches. And the higher the stakes, the more fervent the passions become. This places an added burden on each of us to ensure that no matter how strong our convictions, we must never descend into violence.

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: Kristaps Ungers

Sew It Goes

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I spent the Fourth of July sewing. My project: a midnight-blue knit pencil skirt. It was an easy project, and I finished it Friday morning.

I needed a win. The longer term sewing project I’ve been struggling with for months, a tailored wool blazer, has gone through two pattern tests (muslins or toiles), and though I’m getting closer to the right fit, it will require a third toile that I don’t feel like doing right now. Among other things, it’s just too hot.

So I decided to make something simple. A good strategy. Especially since it took me an hour just to thread my serger, which is old and clunky but still sews a very clean, trimmed and overcast seam, perfect for knits. The skirt is nearly perfect. (Only I know where the mistakes are, and they are minor and don’t show.) It fits well, is comfortable, versatile, and an immediate wardrobe staple.

Another bonus: After I finished, I realized that the project had completely absorbed my attention. An excellent escape from all the stress of our current moment in history. What better way to ground myself than by creating something I enjoy wearing? So, I will be sewing more simple projects this summer, using up some of my decades-old fabric stash as well as a few new fabric purchases. No hand sewing required. I’ve found several great patterns and am looking forward to making them.

And keeping my mind clear and calm.

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.I spent

Hand-off

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I’ve been dropping things lately. This is largely due to calcinosis in my thumbs that makes it harder to hold on. My dexterity waxes and wanes, depending on how a particular piece of calcium is working its way out through the skin, and currently some shards are on the move.

And so, Sunday night, when I tried to lift a large pot of cooked pasta over to the kitchen sink to strain out the water, you guessed it, the pot slipped and I splashed hot pasta water all over the kitchen floor. Thankfully, not the cooked pasta! And I managed to move out of the way so I didn’t get burned.

But I was really annoyed with myself. Al was home, fortunately, and calmly cleaned up all the water on the floor with old newspapers and towels, while I groused.

Finally I calmed down. And the meal turned out well.

I don’t usually get so frustrated with my hands. I try to take very good care of them and respect their limitations.

Which, of course, are my limitations. It’s a strange aspect of this disease, that my hands can look and feel so alien and disfunctional, but they remain a part of me. Even after four-plus decades living with scleroderma, I sometimes still find this surprising. I see my hands all the time, but there are moments when I’ll catch their reflection framed in a mirror and am shocked at how bizarre they look.

Then I remind myself that they are me, that regardless of how strange my hands appear, I’m still able to do as much as I do. And to be grateful for that. And to forgive myself for getting frustrated. It just is.

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.

Too Darn Hot

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This past week here in Massachusetts has been hot. Really hot. And humid. As much as I like warm weather, temps in the 90s and high dew points are not my preference. Low 80s with a light breeze and sunshine is my favorite kind of day. Just right for my Raynaud’s, no need for air conditioning, which is a whole other topic (as in, I hate it unless it’s a sweltering 90+ degree day with high humidity).

As it was, I had to break down and put on one of our heat pumps, which doubles as an air conditioner, or I would not have been able to function. The heat pump in our living room is powerful enough to cool the entire first floor. Later in the day, I would turn on the pumps in two of the upstairs bedrooms to reduce the heat that had risen to the second floor. Our attic fan helped, too.

Overall, pretty effective strategy. But the heat still left me feeling drained.

On Monday, I learned that there was another reason that the weather left me dragging. I had a check-up with my wonderful Boston Medical cardiologist, and in the course of our conversation, he told me that one of my medications, a calcium channel blocker, Diltiazam, which has worked miracles for my heart issues, can also make you feel light-headed in high heat. The drug lowers blood pressure, so if you perspire a lot and don’t drink enough fluids, your BP can drop even further.

I never got to the point of feeling faint, but I definitely felt off during the heat wave (and we have another few days on the way). I’m always drinking seltzer, so I never was really dehydrated. But on one day in particular, when I misjudged the humidity and left windows open overnight, I perspired a lot, which I rarely do, and felt more draggy. So, now I know better.

Which brings me to my main point: In extreme heat, which is becoming more common in summers as our planet warms, it’s really important to know how your meds can affect your body’s ability to regulate itself. Here’s a good overview from Scientific American.

So, Dear Reader, please be informed, stay hydrated, and stay as cool as possible during what promises to be another record hot summer. And, when the temps look daunting, here’s a Broadway cast recording of Too Darn Hot by Cole Porter, from the musical Kiss Me Kate, to help you chill. 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: Library of Congress

The More Things Change

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Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. Enjoy!

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.