Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Cold Snap

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Seems like we’re stuck in an Arctic weather pattern here in New England. After a couple of mild winters, this January feels like the real thing. Which is not to say that global warming isn’t happening. Global weather patterns are shifting in unpredictable ways, and this winter is just part of the mix.

I find it challenging, to say the least. Even at home, with the heat on, I am in multiple layers. My ultra-warm alpaca sweater jacket that I made in December turns out to be one of the best things I’ve ever sewn. Good timing.

With single-digit windchill, I’ve had to keep indoors more. But on Monday afternoon, when the temperature hit 30°F, I pushed myself out the door in all my winter gear and took my 25 minute walk around the neighborhood. Even without any wind to speak of, my eyes were cold. Nonetheless, I was glad I did it. Walking really clears my head. I sleep better. The air smelled clean and crisp. A few birds were singing (aren’t they cold, too?). And the ice-crusted snow glowed in late afternoon sunlight.

Best of all, in late January, I realized that the sun was not quite as low on the horizon at 3 o’clock. Indeed, it’s still a bit light now at 5 o’clock. Whatever weather and climate disruptions we must face and strive to mitigate, at least there is this one constant. Our precious planet spins on its annual trip around our sun, and the days grow longer, once again.

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.

Waste Not

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I use a lot of bandages. Right now, I need six bandages during the day and five at night to protect my digital ulcers. So that’s 11 every day, 77 a week. My favorite brand is Coverlet, because they are made with very soft fabric with non-irritating adhesive. They come 100 to a box. I buy a dozen boxes at a time, and in the winter, will go through a box every 10 days. When I’m down to two boxes, I order another dozen, to be sure I’ll get them in time, because they’re not available in stores.

So far, knock on wood, there have been no supply side issues with getting them, but I’ve really tried to keep on top of it. No other brand comes close.

All those bandages generate a lot of waste paper—the paper protective cover and the paper backing to the bandage adhesive. It’s bothered me for many years. But now, I’ve found a solution.

Recently, we enrolled in a composting program that’s available in our fair city. Not only do they accept food scraps, but also certain kinds of paper. Apparently, the paper actually helps in the composting process. And the kind of paper used to package my bandages is included in their “ok” list.

So, now, once a day, I empty all my bandage paper scraps into our kitchen compost bin, and when full, the biodegradable bag goes into the larger biodegradable liner in our outdoor compost bin, which is collected on Friday mornings by our compost service.

Not only are my bandages protecting my fingers, but their waste paper is helping to keep the planet a little healthier, too. A win-win.

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: Toni Reed

Testing, Testing, 1-2-3

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Over the past 20 months, I’ve had plenty of Covid tests. Mostly, I’ve been tested to meet requirements for certain diagnostics, such as a pulmonary function test, or to comply with protocols for my eye appointments at the local optometry college. I’ve also been tested when we’ve had a few Covid scares at home. All have been negative, thank goodness, and all have been PCR tests that take about 24 hours for results.

This weekend, however, for the first time, I conducted my own rapid Covid test, prior to attending a dinner party with friends, as an agreed-upon safety measure. I was able to snag a couple of boxes of BinexNOW Covid test kits ($14 apiece), which contain two tests each, a few weeks ago. Now the tests are out of stock at most places, including Walmart online, which is how I found mine, thanks to a tip from a friend. Hopefully the supply shortage will ease soon. Our city received nearly 70,000 free test kits last week from the federal and state governments, but those are being distributed (appropriately) to those most at risk. So, I’m glad I planned ahead.

The process was interesting. There’s a nose swab, a dropper of special solution, and a card that serves as the test medium. First you wash or sanitize your hands. Then you open the card, check to see that the light blue control line is visible, and place it on a table. I assume it has to be on a level surface. Next, you open the little solution tube and add six, count ’em, six drops to the larger of two holes in the card. And, warns the directions, don’t touch the dropper to the card! This step proved a bit trickier than I expected, mainly because it’s hard for me to squeeze little plastic droppers. But I managed.

The next step is to swab your nose, making at least five circles inside each nostril, lasting at least 15 second on each side. Now, I’ve had my nose swabbed plenty of times, and it never bothers me. However, there is some kind of solution on the swab that really tickled. I had to clench my teeth so I could tolerate it.

Finally, you insert the swab into the card via that large hole until it bumps up against the edge of a second, smaller hole, and turn it five times (if memory serves me correctly). You unpeel the adhesive strip on the card’s edge and close it over the swab, so the whole contraption looks like a giant lollipop. Then you wait 15 minutes to read the results in the little window on the front of the card. If only the top purple line appears, you’re negative. But if you see a second purple line, then you’re positive. It reminded me a bit of waiting on a home pregnancy test.

I set my watch for 16 minutes, just to be sure. Lo and behold, only one purple line. Hurray! Not that I expected a negative result, although it was quite reassuring.

As Omicron spreads exponentially, I’m expecting this to become routine. And even with three Moderna jabs and plenty of precautions, I would not be surprised if I still test positive at some point, given how contageous this new variant is. Hopefully not, but if I do, hopefully a mild case. The reality is that with all the masking, I haven’t caught a cold or other virus that I know of since all this began (knock on wood). At some point, Covid will evolve into an annual endemic like the flu. That cannot happen too soon.

Meanwhile, we’re profoundly fortunate to live in a country that provides vaccines, with new antiviral pills a few months away. This wave is certainly serious, and many will suffer who have chosen not to be vaccinated, not to mention all the health care professionals who are exhausted from protecting us. But a year ago, before the vaccines, this was so much worse. We know more, we have some powerful medical options, and masking works.

Stay safe out there.

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.

Rainbow Fingers

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On Sunday afternoon, I was sitting in my home office, making plans for the week, when I leaned back in my chair and glanced at the ceiling. There were dozens of rainbows, scattered everywhere. I looked down at my desk and saw more rainbows, dancing across my hands.

The source was the mid-afternoon December sun, fracturing through my crystal pen holder. I tried to take a picture of my left hand with my right, holding my phone. But this was an impossible feat, given current ulcers. So I grabbed my small tabletop tripod, rigged up the camera, and caught the image, above . . . though not without some difficulty, because the Earth was turning and the sun’s angle was shifting, even within seconds.

Change is the only constant. Beauty is fleeting. But if you pause to pay attention, glorious moments abound.

May your day be full of rainbows.

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.

Sew On and Sew Forth

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Finding truly warm, affordable clothes with some style is not all that easy. Ever on the lookout, I find that too many offerings that look warm are actually made with synthetic fibers, like polyester, acrylic, or nylon, which don’t really keep you warm and can trap perspiration, making you colder. But good wool garments are expensive.

So, I decided my best alternative was to sew myself a sweater jacket for winter. A few months ago, I found an easy pattern and some cranberry-red alpaca knit fabric on sale online. Next step was to get the fabric dry-cleaned, to preshrink it (this prompted the dry cleaner to request my signed understanding that the fabric might ravel in the process—which didn’t happen).

But then the fabric, now ensconced in a plastic dry cleaner bag, lay folded in my office. For weeks. The problem was two-fold: I didn’t have time/couldn’t make time to work on the project due to holidays et al., and, more importantly, I have been wrestling with some very sensitive ulcers on both thumbs and my right ring finger. No way to cut out the pattern, figure out any adjustments, cut the fabric, and sew it up when I really couldn’t handle scissors or pins.

That is, until this past Sunday, when my hands had finally progressed enough, Thanksgiving and Hanukkah celebrations were past, and I decided to just get down to it. Cutting the fabric was still hard, despite using spring-loaded shears, but I made a lot of progress, especially because I could use my serger, which sews, trims, and finishes seams all in one step (but you really have to pay attention, because seams can’t be resewn easily!). Wool is also very forgiving, with any wobbles in the seams (due to weaker hand control) easily steamed and straightened. Still another sewing session needed to finish it, but I’m pretty pleased (ever the perfectionist) with the outcome.

And, it’s delightfully warm.

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.