Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Delayed Reaction

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A week ago Friday, I checked an item off my health care to-do list when I got my pneumonia vaccination. For older adults, mine was Pfizer’s Prevnar 20, which stands for Pneumococcal 20-valent conjugate vaccine, in case you’re wondering. Basically, it covers a slew of bacterial strains, and as of current practice standards, I won’t need another pneumonia vax, ever.

It barely hurt, and I only had minor aches in my left shoulder for maybe 48 hours. No big deal.

Meanwhile, I’m still nursing nasty multiple ulcers in my left ring finger that have cost me a nail and considerable discomfort for at least six weeks, now, even as it slowly heals.

Thursday evening, after my shower, I noticed an odd, blotchy rash on my upper left arm. At first, I thought it could be hives, which I occasionally get from taking a shower. But the rash did not clear. In fact, it seemed to be spreading a bit.

Now, I have a history of cellulitis when I get infections in digital ulcers. Haven’t had an episode in quite a while, but this was my immediate concern. If you’ve ever dealt with this kind of superficial skin infection, then you know that it can get very dangerous if left unattended, with the potential, if it gets into the bloodstream, of causing sepsis.

Typically, when I’ve developed cellulitis, it spreads in a thick, red line from the ulcer up my forearm. I once had the experience of watching it spread at a rate of about an inch an hour. That landed me at the infusion clinic of my hospital, getting IV antibiotics.

So, even as this rash was in no way connected to my ulcer, I was still worried—indeed, worried enough to have trouble falling asleep, and rising to check if it was spreading several times. That is, until about 2:30 in the morning. I had traced the outline with an eyeliner pencil about an hour earlier and the rash hadn’t really moved. So I took a minocycline pill, which I always have on hand, and convinced myself to get some sleep. No way I was going to the ER to deal with it unless it seemed aggressive.

When I woke up Friday morning, there was no change in size, though the rash had filled in and was definitely warm. It suddenly occurred to me that this might be a reaction to the pneumonia vaccine. During Covid, I had twice developed a rash in my injected arm from the Moderna vax, though never from Pfizer. But this was a totally different shot. Sure enough, I found a few research articles online about delayed reactions to the Prevnar shots, though it’s quite rare (of course—I always get rare complications).

At 8:00 I called our geriatric practice and explained my concern, that I needed someone to determine if it was cellulitis or the vax reaction. I was prepared to spend half a day at Urgent Care, if necessary. So, here’s why I love our geriatric providers: they make house calls. And, it turns out, that even as our NP was not available, they could send a mobile urgent care team to our home. Which they did.

The team was great, and they confirmed my second hypothesis, that I was reacting to the shot, even as the rash was several inches below the injection site. The solution? Zyrtec. Which I started that day, and the rash is subsiding.

To say I’m grateful is an understatement. Fortunately, after four-plus decades of living with scleroderma, I know enough to know what to watch out for and how to get help. And I’m lucky to live where excellent help is available, right in my own home.

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: Louis Reed

Cooped Up

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It’s 30 degrees F here today, but the real feel is about 19. It snowed over the weekend, just over four inches of fluffy white stuff, very pretty for a day and now shrinking into icy clumps. It’s too cold for me to take a walk, and the streets are patched with ice.

Ugh. I know it’s a lot colder elsewhere in the world, and there are far too many other urgent issues that demand concern. But right now I’m just feeling stuck inside, when I do my best thinking outside.

My ulcers are healing slowly, a bit better than last week, thanks to starting antibiotics when I realized I had at least one and possibly two infected fingers. But I still can’t do a lot of typing. Which also helps me think.

So I am just muddling along, trying to make the most of this cold day without getting too stuck in the muck I can’t control. I think we could all use a shovel to dig ourselves out, right about now.

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.

Improv

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I need to keep this short today, because my left ring finger is very sensitive, and it’s my main finger for typing with that hand. I’ve been losing the nail, and the skin beneath it is quite irritated. So I am typing with my usual three fingers on my right hand (thumb, ring and pinky) and using a rubber-tipped stylus to press keys with my left. Normally I use just my thumb and ring finger on the left.

This is slow going, sort of, because I can’t look at the screen as I type. But it’s better than nothing.

Over the years, I’ve learned to type seamlessly with only five fingers. I don’t think about it at all, until something like this happens. I hate voice-activated software, because it slows down my thought process and requires a lot of corrections—or, at least, it used to the last time I tried it, which was about seven years ago.

So, for now, I’ll keep up with this hunt-and-peck method until my finger heals up. Maybe I’ll even learn to type this way without looking. And who knows, maybe I’ll find an even better solution for the next, inevitable time ulcers get in the way of writing.

When things fall apart, creative opportunities abound.

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.

A Dozen Yellow Roses

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Monday marked our 40th wedding anniversary. A major milestone, indeed.

On Friday, Al brought home a dozen yellow roses to mark the occasion. On our first date 40 years ago, he brought me a dozen yellow tea roses, with the throw-away line that he was supporting his local florist. It was quite the surprising and touching gesture, especially on a blind date back in 1984. While that wasn’t the only reason I married him that December, it certainly helped.

The first year of our marriage was tumultuous. Al’s mother suffered the first of two debilitating strokes, Al became her front-line caregiver with my support, then he caught a serious case of mononucleosis and ended up in the hospital with a ruptured spleen and emergency surgery. He came home from the hospital the day before our first anniversary.

Meanwhile, back in January, a few weeks after we got back from our honeymoon on Cape Cod, I learned that I had some kind of autoimmune disease that was causing my fingers to swell and migrating arthritic pain. It was either rheumatoid arthritis, lupus, or scleroderma, which I’d never heard of.

We made it through that year and many other health crises in the decades, since. We raised two extraordinary daughters. We both worked hard at our careers, and we were both laid off and had to reinvent ourselves professionally, well into middle age. We shepherded our aging parents through their own infirmities and deaths. We continue to be active volunteers in our various communities. We cherish our travel adventures together.

No marriage is easy or perfect. We are very good at driving each other up the wall, across the ceiling, and down the other side. But Al has always been there for me, and I, for him. When we wed in 1984, I worried that the year was perhaps a bad omen. But here we still are, approaching what may actually be an Orwellian era, side by side. To say I’m grateful is a vast understatement.

Happy Anniversary, Al. I love you.

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.

That Time of Year

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It’s darker and colder, and winter is definitely on its way here in New England. Most of the leaves have fallen, and the city has swept the streets, so we no longer drive amidst canyons of leaf piles. Halloween witches and Thanksgiving turkeys have given way to Christmas lights and inflatable snowmen.

My fingers are not happy. As the temperature drops and the air gets drier, my skin becomes more fragile and ulcers appear. Right now, there are five: one on my left thumb, a couple on my right thumb, one on the tip of my right index finger, and one on the tip of my right ring finger. I am, as you’ve undoubtedly surmised, right-handed.

The thumb ulcers are nothing new. I have these perpetually, year-round. In fact, I can’t recall when I last was able to go without bandages on either thumb, mainly due to calcinosis lurking beneath the surface. The index finger ulcer is new, however, due to another calcium deposit. It is healing, slowly. The ring finger ulcer is more like a thin opening in the skin surface due to dryness. It is harder to heal, maybe because the skin is just very delicate.

So, I clean and bandage them twice a day and am very careful to keep them free of infections. It’s such an ingrained routine at this point that I don’t think much about it—except that I’m going through boxes of bandages at a faster rate than normal. For most of the summer and fall, I just had my thumbs to deal with.

There is some judgment involved, however. At what point do I leave off the bandage at night and allow my finger to heal on its own? It’s a real balancing act. If I forgo the night bandage too soon, the ulcer can get too dry and uncomfortable and wake me up. But if I rely on bandaging too long, then the ulcer may take even longer to heal and possibly get larger. I recently weaned an ulcer on my left index finger successfully. I’m working on the right ring finger this week.

I also need to be careful not to overuse my hands. I was reminded of this over the holiday weekend, when I was immersed in a sewing project that required some hand sewing—a frustratingly major challenge, given my resorbed fingertips and all the bandages. The result was an enlarged ulcer on my right thumb. Aargh. At least the project came out well.

Always an adjustment, heading into winter, no matter how many years I’ve lived with scleroderma. So it goes.

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.