Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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

Butt in Chair

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Writing is one of those pursuits that you need to do sitting down. Of course you can stand or walk around as you dictate text, and I’m sure that as AI gets better, dictation will get easier and more accurate. But having tried dictation software several years ago when my hands were very damaged from ulcers and subsequent surgery, I am not a fan. Speaking sentences taps a different part of my brain than writing with my fingers, either longhand or at a keyboard. I much prefer the fluidity of handwriting or typing.

Standing desks are a non-starter for me, because my feet don’t do well when I stand for long periods. Which means I spend a lot of time at my computer, sitting. This has become more difficult, of late. I have a decent desk chair, with a mesh seat and back that can be adjusted for height and angle. But more and more often, when I get up, my back hurts, especially at the base of my spine. I have to press it with my fist to propel forward and get the pain to ease.

Time for a new chair. But no guarantees that a chair in my price range can solve the problem (I am not about to lay out $500 – $1,000 for a top-of-the-line chair). So I did some research last week about cushions that can relieve coccyx bone pain. And I found one with good reviews, a Balance All-Gel cushion from Medline, which I’ve used previously for their extensive line of wound care products.

This cushion is not cheap. In fact, I could have bought a new chair in my price range for the same amount. But it is a special gel pad that breathes, actually designed for wheelchair users. It’s only two inches thick, compared to other coccyx bone cushions, which are typically much thicker, use some kind of memory foam, and have a cut-out at the back that can relieve the immediate coccyx pain but possibly also aggravate sciatica.

As I write on Monday, it’s the second day I’ve tried it, and the first full day using it as I sit at my computer. I was really not sure yesterday. It seemed hard and kind of weird, because it has a grid inside that feels a bit like sitting on a waffle. But today I’m feeling more confident that I made the right choice. When I stand up, I do not have that soreness in my tailbone. I’m also sitting up straighter, due in part to the cushion and in part to how I adjusted my chair to accommodate it. That’s certainly a plus. The jury is still out, and I’ve saved the boxes it came in, but I am encouraged.

Of course, the obvious solution to all this is to get up more often and move around, so I don’t get too stiff. I also decided to try yoga again, so I signed up for a class later this week.

Aches and pains are all a part of aging, as well as the premature aging that comes with scleroderma. My late father used to say that any problem can be solved if you have the right tools. Certainly a good mindset that continues to guide me through the messy complexity of chronicity. Here’s to you, Dad. Happy Father’s Day.

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.

Workout

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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.

Birthday Jaunt

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Covid over (despite a scare last Monday when I developed a sore throat that, fortunately, resolved on its own), Al and I celebrated my birthday last Wednesday and Thursday with a quick trip to New Haven and New York City. My goal was to see a couple of art exhibits, one at Yale and the other at the Neue Galerie in Manhattan. The weather was sunny, the art stunning, the food excellent.

We stayed overnight in New Haven at a hotel that functions solely on electricity and is fossil-fuel-free, the Hotel Marcel, named for Marcel Breuer, a Bauhaus luminary who had originally designed the building as the corporate headquarters for Armstrong Rubber Co. Converted to a hotel with a commitment to sustainability and many curated Bauhaus details, it aims to be the first certified “passive house” hotel in the U.S. by the end of next year.

So, it was a fascinating trip, on many levels. Here are some of my favorite pieces from the Yale Art Gallery (no photos allowed at the Klimt landscape exhibit at the Neue Galerie). Photo above is one of my favorite NYC views, the constellation mural and lights on the ceiling of Grand Central Station. Enjoy!

Edvard Munch, Toward the Forest I, 1897
Ernst Ludwig Kirchner, Schlemihl’s Encounter with His Shadow, 1915

Joan Miró, Jeune fille s’evadant (Girl Escaping), 1968
El Anatsui, Society Woman’s Cloth (Gold), 2006
Paul Klee, Heitere Gebirgslandschaft (Joyful Mountain Landscape), 1929
Wassily Kandinsky, Mit baumtem Kreis (Multicolored Circle), 1923
Josef Albers, Skyscrapers A, ca. 1929

 

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.

Best Laid Plans Department

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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.