Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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

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.