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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Cutting Loose

Evelyn Herwitz · August 27, 2024 · 4 Comments

As I’ve written a few times over the years since I began this blog, packaging is the bane of my existence. On Monday morning, I was wrestling with a plastic package for a nasal spray that I use occasionally to clear my sinuses and reduce post-nasal drip and related cough. The thing was hermetically sealed. No way to open it without a pair of sharp scissors. And even that was a struggle. I ended up cutting off one edge, then slicing straight down the middle of the plastic, then adding a diagonal cut to release the treasure so ridiculously enclosed. Throughout this mission, I had to be careful not to hurt my fingers on the sharp edge of cut plastic.

Why is this necessary? Are the manufacturers that fearful of someone opening their precious package in the store and stealing the goods? As it is, you can’t even access this product in a CVS or Walgreens without summoning a sales clerk with a set of keys to open the plastic-covered shelving, which has become ubiquitous in recent months to prevent shoplifting (another dubious trend).

And must we really rely on so much plastic for packaging? All that discarded plastic eventually breaks down into microplastics, which have worked their way into the global ecosystem—and our bodies. Microplastics, defined as less than 5 millimeters across, have been documented in human lungs, maternal and fetal placenta tissues, human blood and breast milk. They have been detected on the top of Mount Everest and in the depths of the Mariana Trench. They are in the air, our food, our water. Here’s a really thoughtful overview of the extent of microplastics’ spread from Science News.

While research into the health impact of ingested microplastics is not yet definitive, there is ample reason for concern. At the very least, according to research immunologist Nienke Vrisekoop of the University Medical Center Utrecht, microplastics are a form of air pollution. We know that familiar forms of air pollution, such as smog and car exhaust, stress our lungs. Vrisekoop, who is quoted in the Science News article, expects the same will be true of microplastics.

What to do? We can’t avoid plastics altogether, not yet, anyway, but at least we can try to reduce their use in our daily lives. I’m looking at you, bottled water. I may not yet have an alternative to that nasal spray, but I’m considering writing to the manufacturer to let them know what I think of their packaging. And of course, recycling plastics is a no-brainer.

There’s a famous line in the 1967 film The Graduate, when a very young Dustin Hoffman, at a college graduation party hosted by his parents, is advised of the one word that should define his future: “Plastics.” Indeed, it has defined all of our futures. Just not in the way we expected.

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: Naja Bertolt Jensen

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Filed Under: Body, Mind, Sight, Taste, Touch Tagged With: hands, managing chronic disease, packaging

Sew It Goes

Evelyn Herwitz · July 9, 2024 · Leave a Comment

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

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Filed Under: Body, Mind, Sight, Touch Tagged With: hands, mindfulness, resilience, sewing, stress

Hand-off

Evelyn Herwitz · July 2, 2024 · 2 Comments

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.

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Filed Under: Body, Sight, Touch Tagged With: body-mind balance, calcinosis, finger ulcers, hands, managing chronic disease, resilience

Workout

Evelyn Herwitz · May 28, 2024 · 4 Comments

Memorial Day weekend was beautiful and warm here, a fitting beginning to the summer season. Finally, I’ve been able to go out without a jacket or coat, wearing just a sweater for an extra layer, if at all. We’ve had some rain, too, and as a result, everything is growing. Our new cherry tree has dozens of cherries, still green but getting plump. Our new blueberry bushes are filling out, too, and I’m looking forward to picking some berries in coming weeks.

The grass in our reseeded lawn, a nitrogen-restoring mix of fescue and clover, has grown quite tall, too. The clover takes a couple of seasons to establish itself (at which point the lawn becomes low-maintenance) but the grass has definitely taken hold. Meanwhile, Al has been away for the past week, visiting friends out west, returning Thursday morning. The yard is his turf, and he loves to putter outside. But at the rate the grass has been growing, by the time he comes home, I envisioned monkeys swinging from blade to blade. Or, more realistically, a happy neighborhood of deer ticks.

So, I decided that I needed to mow the lawn myself.

Now, I have never done this before. We have an old, gas-powered mulching mower, the kind with a pull starter-cord. It’s not terribly heavy, so I knew I could push it. But I wasn’t really sure how to operate it. So, I asked a mechanically-skilled friend who lives up the street to give me a lesson.

He inspected the oil and gasoline levels and adjusted the height, because I didn’t want to mow too close to the ground and chop off all the clover that has formed. It took him several tries to start the mower, because it had been sitting idle over the winter. Then I tried, but I didn’t have the grip or arm strength to yank it hard and fast enough. So he started it again for me. All I needed to do was grip the bar that controls on/off, push and mow.

Which I did. It was not terribly difficult, but it was not easy, either. The hardest part for my hands was gripping the bar to the mower handle, so it wouldn’t turn off before I was finished. Maneuvering it around our front yard took some pulling and shoving, especially because the grass was at least a foot tall. I worked up quite a sweat. Just as I was almost done, the mower stopped because it had run out of gas. Good timing.

Next step was to use the weed wacker to trim the borders of the lawn, but our extension cord only goes so far, so I had to leave that task only partially done. Also, the weed wacker vibrates intensely, not great for my hands.

After I put everything away, I proudly reviewed my handiwork. I could feel that I’d used muscles in my arms and legs that I haven’t challenged in a long time. It was actually good exercise, which I hadn’t expected. And the front lawn looks better, albeit far from pristine. Thanks to my good neighbor, I learned a new skill. But if I ever have to care for the lawn more often, I will definitely get rid of that old mower and buy a battery-powered version that is less polluting, more energy-efficient, and easier to operate.

That said, I accomplished my goal. And I proved to myself in the process that my hands are still capable of more than I have come to assume over my decades with scleroderma. Well worth the experiment.

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.

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Filed Under: Body, Mind, Touch Tagged With: exercise, hands, managing chronic disease, resilience

Best Laid Plans Department

Evelyn Herwitz · April 23, 2024 · 2 Comments

And so, despite my best efforts, I did get Covid last week, after all. In fact, I tested positive on Tuesday afternoon. At first, I thought it was just allergies. All the trees have finally bloomed here, and pollen is in the air.

Just to be sure, though, I took a test. When I first looked at the results, I thought I was still okay, but there was the faintest positive stripe. So I repeated it. Same thing. And by evening, I didn’t really need to doubt it. I was starting to get chills, and my throat was swelling.

By morning, I felt truly rotten. No fever, but all the symptoms I get with a virus, especially severe Raynaud’s and joint aches and headache and sinus congestion. My hands felt like blocks of ice, and it took at least a half hour of huddling under blankets and meditative breathing to regain feeling. I called our primary care nurse practitioner’s office, and by midday I’d gotten the go-ahead to start Paxlovid.

This is the second time I’ve caught Covid. Last time was two summers ago, right before we were supposed to go on vacation, causing a total reorganization of travel plans.

This time, it hit right before my 70th birthday and Passover, which begins tonight. So all plans for both had to be scuttled and rethought.

Thanks to my wonderful daughters and husband, my birthday turned out to be a lovely celebration, despite being sick. The Paxlovid kicked in enough for me to feel somewhat better when I woke on Thursday—and discovered in my email a gift certificate from the family, orchestrated by my daughters, for an Air BnB writing retreat, good for anytime I want to go. In addition, my younger daughter had created a fantastic 70th birthday video with greetings from family and friends, including some people I had lost touch with over the years. It gave me a great boost and is a wonderful keepsake.

Al brought home flowers, and later, he picked up a nice dinner from one of our favorite restaurants to eat at home. So, I felt fully celebrated and grateful—and resilient. Take that, Covid!

We’ve had to upend our Passover plans, because we are just barely clearing the hurdle of having to mask in public (five days after you feel better, have no fever and no symptoms). So we are doing a Zoom seder with our immediate family for the first night, and just me and Al, the second. It’s a small and quiet holiday this year. Given my energy level post Covid, that’s just fine. Cooking for just the two of us on Sunday wiped me out.

The one bright side of this, as my Boston Medical rheumatologist said to me weeks ago when we were discussing pros and cons of a spring Covid booster shot, now that I’ve had the latest variant, most likely JN.1, I’ve gained some protection against it. At least, I sure hope so. This virus is not to be messed with, especially for those of us with compromised immune systems.

And so, Dear Reader, I hope you stay well and avoid Covid. But if it nabs you, be sure to ask for Paxlovid. It significantly reduces risks of the virus and really made a huge difference for me. The most recent research says chances of rebound are slim. It makes your mouth taste bitter, but that’s a small price to pay.

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.

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Filed Under: Body, Mind, Taste, Touch Tagged With: body-mind balance, COVID-19, hands, managing chronic disease, mindfulness, Raynaud's, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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