Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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

Little Victories

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No doubt. It’s winter here in New England. Over the weekend, we got about a half-foot of snow, plus some icy rain. Our bird feeder’s squirrel-blocker, a plastic hood that hangs above the feeder, looked like a snow hat. And it’s cold, hovering in the ’20s F. Today we plunge into single digits.

Despite the bitter weather, which I find rather intimidating, I forced myself out the door twice in the past few days. My first jaunt around the neighborhood, on Saturday afternoon, was my first venture out of the house since before Christmas, because of that darn respiratory, non-Covid virus that dogged me for a good 10 days. It felt so good to breathe fresh air. And I finally have my voice back.

Monday afternoon, I ventured out again, along my half-hour route. I was bundled up in my warmest, full-length down coat, lined boots, scarf, wool cap, aviator hat over that, and mittens. I looked ridiculous. But I really don’t care. It’s a priority to get out and walk whenever I am able, to clear my brain, stretch my legs and back, move my joints, and exercise my heart. I definitely feel better when I get home.

I also feel just a little bit invincible. (Yes, I know, that’s an oxymoron.) If I can get out and walk a half-hour in freezing temps, then I’ve overcome my Raynaud’s and scleroderma for another day. And that, Dear Reader, simply feels great.

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.

Speechless

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So, just in time for New Year’s, we had yet another Covid scare this past week. Al came home two Fridays ago feeling a bit off. Sure enough, by Saturday morning, which was Shabbat for us and Christmas for many others, he was totally congested and starting to cough.

Fortunately, I had a rapid test at home, and his result was negative. But by Monday evening, my neck glands were swelling and my throat began to feel scratchy. He continued with a lot of coughing and other cold symptoms, and I proceeded to lose my voice to laryngitis, plus develop congestion, coughing, sneezing, and GI issues. Aches, chills, and fatigue for a couple of days, too.

Al’s rapid test was confirmed midweek by a negative PCR test, and I got my negative test result back on Sunday. But as I write on Monday evening, my voice is still quite hoarse. Al is doing much better, and I’m approaching normal, otherwise.

I have not had a respiratory virus like this since I started masking almost two years ago. I have no idea how we got it, but it goes to show that there are still plenty of other nasty viruses circulating, just like every winter here in the Northeast.

I also have come to realize that my Sjogren’s Syndrome is playing a far bigger role in how I respond to such viruses. Having a dry nose and mouth, not to mention dry eyes, makes it that much harder to flush the germs out of my sinuses. And to recover my voice.

So, I’m pushing fluids and limiting conversations. And being very selective about going out in public. I ordered new KN95 masks for each of us (I need kid’s size, because my face is so narrow).

Hoping we’ll get lucky and avoid Omicron. But at least I know my immune system works against a random virus. With my full set of vaccinations, I have a good shot at fighting off this latest variant, too, if what seems like the inevitable happens.

Here’s hoping, by the next New Year, this will all be a fading memory. Stay safe out there.

Post Script

With this post, I have been writing Living with Scleroderma for ten years. My first entry was on January 3, 2012. Hard to believe that what began as a way to finally come to terms with this strange and rare disease publicly and to share what I’ve learned with others has evolved into a decade’s-long chronicle. At some point, I’ll run out of things to say (even without laryngitis!). In the meantime, thanks to all of you, Dear Readers, for sharing the ride.

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: Arwin Neil Baichoo

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.