Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

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

Virtual Advantage

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As we brace ourselves against the Omicron variant that’s surging across the U.S. and around the globe, all-too-familiar restrictions are going back in place. It’s scary and frustrating and annoying, yes. But if infection rates in other countries hold true here, there’s at least some reason to hope that this latest wave will be short-lived and not as dangerous. Especially if you’re fully vaccinated, which includes a booster.

In the meantime, I’m taking some inspiration from a virtual meeting I attended last week, and I hope you will, too. What’s interesting to me is that the meeting would probably have been less inspiring if it had been held in person, but Covid restrictions required the online format.

Here’s the background: Over the summer, I got involved in some local civic action, coordinating a group of concerned community members to push our fair city to create a commission that would protect our urban forest. Too many street trees have been targeted for removal to accommodate development and infrastructure improvements, when other solutions are available to achieve those goals while saving mature trees. This is an issue I’ve cared about for decades, but had not engaged with for some time. Our urgent climate crisis impelled me to get involved again.

We succeeded in our effort and also helped to re-elect a city counselor who was a key player in the mix. As a result of all this, I decided to apply for a volunteer seat on a related advisory committee that will oversee the city’s recently adopted plan to mitigate climate change. I passed the first hurdle when my letter and resume were approved for further consideration.

The next step was an interview with a citizen’s advisory board that clears applicants for all city commissions and committees. In the Before Times, this would have been conducted in-person, in some kind of public hearing space where each of about 20 applicants for various volunteer roles would have been interviewed one at a time, semi-privately. But due to Covid, we were all online, in our little Brady-Bunch-boxes, along with the board members, interviewing in front of everyone.

I was #15 on the agenda and a bit nervous.

As the meeting proceeded, however, it soon became apparent that I was in the company of some really remarkable souls. Each one of us wanted to help the city do better. Each wanted to contribute their expertise and passion to a particular volunteer responsibility.

Three of the candidates had immigrated here years ago—one from Ghana, one from Vietnam, and one from Libya—and all wanted to give back to the city (zoning board, elder affairs commission, board of health) that had taken them in and enabled them to flourish. Three others applying for the same committee as I was had outstanding professional credentials related to environmental engineering and energy conservation. I chose to emphasize my communications skills along with my knowledge of the city’s urban forest.

One young man who was an amateur boxer and had grown up in local youth clubs wanted to help others gain the support and affirmations that had meant so much to him by serving on a commission devoted to inclusion and diversity. Another was an attorney who had recently moved to the city and wanted to help with human rights issues that included, most recently, the use of police body cameras. And that’s just about half the people at the virtual meeting.

If Covid hadn’t forced us to attend online, I never would have heard all those wonderful stories. It made me feel really great to know that these people exist. Best antidote ever for all the dark news these days.

And, yes, I made the cut. Final step is an interview with the City Manager’s staff. Even if I don’t get picked, I know that some caring and talented people will be selected. That’s all that really matters.

Here’s hoping 2022 brings more light to us all. Best wishes for a healthy, uplifting New Year.

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: Harrison Steen

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.