Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Not the Weekend I’d Planned

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On Thursday, I set out for Philadelphia to spend a long weekend with our younger daughter. Never got Covid from Al, thank goodness, and he was on the mend. There’s no direct route from our Fair City to Philly, and it’s too long for me to drive, so I scheduled a combination of Greyhound and Amtrak. My nine-hour trip was relaxing and went off without a hitch—despite the Polar Vortex that had engulfed the Northeast for several days.

We’d been planning this long weekend for months—visits to art museums, dinners out, crowned by Sunday in New York City, visiting one of my favorite museums and having a special lunch before we went our separate ways back home. The weather forecast looked great for Sunday, warming into the low ’40s.

Friday in Philly was very cold, but we enjoyed a visit to the Woodmere Museum, which features local artists and had some wonderful works on exhibit. Later, I bundled up and we walked the short blocks to a lovely restaurant for dinner. We came home and sat up late, having a long, deep mother-daughter conversation.

The plan was similar for the next day. But by about Noon on Saturday, I started feeling off. As in, I felt like I might faint. Within an hour, I was lying on the floor in the bathroom, plagued by the runs and nausea. My daughter was a wonderful support and pegged the likely cause, a norovirus, which has become rampant this winter season. I rarely get stomach viruses, and I haven’t thrown up in decades, but this was another beast altogether.

My daughter went out to get some electrolytes and easy-to-digest foods, but one sip of the electrolytes had me retching in the bathroom. Over several hours, my GI tract emptied out and I was able to get some rest in bed. But by about 4:30 in the afternoon, I was still feeling off, so I called my PCP’s office back home and spoke to a triage nurse. Was there anything else I should do? After ticking off a full range of symptoms, most of which I did not have (no, this wasn’t a heart attack), she still felt I should go to Urgent Care or an ER, given my other medical conditions, just to be sure I would be okay.

And here is where the American medical system falls short. Given that it was past 5:00 p.m. by the time I finished the call, all but one Urgent Care in the area was already closed. The latter was supposed to be open until 8:00 p.m. I tried calling but got voicemail. So we drove there, anyway, since it was only five minutes away. And it was closed. No explanation, just a sign on the door that said they would be open again Sunday at 10:00 a.m. We were near an ER, but I really did not want to go, because it would have been at least a six-hour ordeal.

So we decided to go back home and see if I could actually hold down some ice cubes or even a little water. If I threw up again, we’d go to an ER. Sucking on an ice cube made me feel woozy again, so we looked online to see if there was another Urgent Care not too far away. We found one, a 20 minute drive, across the New Jersey state line, that was open until 8:00 p.m. But I wanted to be sure they would accept my insurance.

This time, I got a human on the line, who had to check if they would take my Medex supplemental insurance from Blue Cross/Blue Shield of Massachusetts. The answer was no, they didn’t take Medicare supplements, only Medicare Advantage plans.

Now, the problem with Medicare Advantage is that, for someone with a complex medical condition, these plans have a lot of restrictions on in-network physicians. Which is why I’ve held onto my traditional Medicare and Medex plan. This could all become more difficult under the new administration in Washington, which is a deep concern, but that’s a subject for future posts.

In any case, we decided to wait and see how I was doing before going to an ER. I was concerned that I’d run into the same issue with out-of-state insurance, and there was no point risking a five-figure bill for an ER visit unless it was really necessary. I also felt that the advice I got from the triage nurse was overly cautious, so she would not be liable for underestimating my risk.

Fortunately, the gamble paid off. Over the next few hours, I was able to drink nearly a cup of water, and my gut settled down. I slept, with a couple of interruptions, for ten hours. I was able to tolerate Tylenol and antacids before bed. By Sunday morning, I had an appetite again, and by Sunday evening, though still tired, I was feeling like myself. My daughter was doing well, and with any luck, she’ll dodge the bullet of this nasty, fast-moving virus.

We spent the afternoon binge-watching Queer Eye. I took a break to walk to the nearby supermarket and pick up some eggs. I was tired when I got back, but okay. I scheduled a flight home for Monday afternoon, since I was not up for any more long train-bus rides.

I still don’t know how I got this bug. Maybe from public restrooms in bus/train terminals? Or maybe I picked it up before I left home? At least it was short-lived, which is a hallmark of noroviruses. It ruined our wonderful plans, but we still had a meaningful, loving visit. And in the end, other than feeling better again, that’s all that matters.

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.

Covid Redux

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Just in time for 2025, last week Al came down with Covid. He was feeling off Tuesday afternoon and worse by Wednesday evening. What began as a winter head cold deepened into a rough cough, so on Friday he went to urgent care to rule out pneumonia. His lung X-ray was clear, but a Covid test was positive.

We were both stunned. We’d been vaccinated back in September before our trip to Israel and Switzerland, and neither of us had any issues abroad or since our return. I’ve read about the uptick in Covid cases. Still, this one seemed to come out of nowhere.

Paxlovid is helping Al significantly, and his health is, thankfully, improving, although Covid is leaving him easily fatigued. As for me, as of Monday afternoon, I’ve consistently tested negative and have no symptoms. Hope it stays that way, and that my vax still protects me.

The last time I had Covid was in April, just in time for my 70th birthday. That was the second time I contracted it. I really don’t want a third bout. When it comes to this nasty virus, three is certainly not a charm.

So, if you have not yet gotten a Covid vax or a flu vax, for that matter, I hope you’ll do it ASAP. As we head into that inevitable winter season of closed windows and indoor crowds where viruses flourish, there’s all the more reason to be protected. While Al’s experience raises questions about the vaccine’s effectiveness after four months, I’d still favor the odds of it working.

So far, for me, so good.

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: Evgeni Tcherkasski

Resolute

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It’s nearly New Year’s. Already, 2025 looms as an even bigger challenge than 2024. But, we won’t know until we live it.

Which is why, this year, for my resolutions, I have a simple, basic goal. I call it the Three C’s to Strive For:

Inner Calm.

Clarity of mind and purpose.

Courage.

That’s it. I know this will be a constant work in progress. I’m really good at finding lots of things to do to take my mind off what is worrying me. Sometimes this is very productive. Other times, it’s a smokescreen.

How to proceed? I know meditating will help with the first two. Lots of deep breathing. Exercise helps, as well. Limiting my news diet and social media are essential. Writing my novel is essential, too. My acting class, which starts up again mid-January, is a surprising source of focus and clarity.

Courage is a learned skill. My ongoing volunteer work to ensure that our Fair City is able to thrive as it withstands climate change is both a source of uplift as well as an ongoing lesson in how to make a positive difference locally. That’s helped me to become braver in public and to build a team of allies. I hope to keep strengthening those muscles.

Even as I write this, however, I also know that there will be plenty of set-backs and difficulties ahead—but not to let any of that predict what can or will come next.

The only thing that’s real is the moment we’re in. My best wishes to you and your loved ones, Dear Reader, for a healthful, resilient 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: Oliver Cole

Sleep Tight

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Cold weather makes me want to hibernate. Four days from the winter solstice, I start yawning by mid-afternoon as the sun slips past the trees beyond our home.

Fortunately, the cold weather also makes it easier for me to fall asleep and stay asleep most of the night. I may be jinxing myself by writing this. I sure hope not. Sleep is what’s saving me these days.

I’m also having a lot of very strange dreams. These usually surface just before dawn, when I have to make the inevitable trek to the bathroom. But I’ve been able to drop off again, because it just feels so good to get warm under the covers. And the strange dreams typically dissipate soon after I wake for the day. Which is a good thing. Because they are really strange.

In about a month, daylight will feel longer once more. It will get easier to drive home from Boston on the Mass Pike in the afternoon by late February, when the solar glare going west is less severe. I’ve been noticing buds on the trees and shrubs around our home, always an encouraging sign of new life to come.

And, if I’m lucky, I’ll continue to sleep soundly, regardless of the onslaught of bad news that floods our world. It’s essential to my health and well being, to my resilience and ability to cope. All the more so in such stressful times.

I hope, Dear Reader, that you are sleeping well, too. If you’re struggling, here are some helpful tips from the Mayo Clinic.

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: Daniele Levis Pelusi

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.