Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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.

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.

Party Crasher

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Just when it seemed like we could finally enjoy a semi-normal holiday season, with safe family gatherings if all are vaccinated, and even the possibility of eating indoors at a restaurant again post booster, along comes Omicron.

We still have a lot to learn about what appears to be a highly contagious Covid “variant of interest.” It will be a couple of weeks before scientists can determine if Omicron can defy the vaccines, although there is reason to believe that the vaccines, especially with a booster, will still protect against serious illness.

In any case, the same safety precautions continue to apply: get vaccinated, get a booster if you’re 18 or older and at least six months out from your full dose, wear a mask in public, practice social distancing, and get tested if you are exposed to someone who has Covid or if you have symptoms.

I am trying to focus on the positive. I’m really grateful that our family are all boosted. We had a great visit with extended family over Thanksgiving weekend, all were vaccinated, and it felt like the Before Times. And so far, so good, I feel fine. I hate having to wear a mask in public, but I can deal with it. It does not impinge on my personal liberty. I am glad to do my part to protect myself and others.

Perhaps this latest development will finally convince the hold-outs to get the jab. Probably that’s wishful thinking. Clearly, more vaccines are needed throughout the world to save lives and make the transition to just another virus we learn to live with.

And so, the pandemic drags on. 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.

Image: Bernard Hermant