Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

And Then the Clouds Lifted

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Sunday was my 67th birthday—or, as my eldest put it, the 33rd anniversary of my 34th. Sixty-seven doesn’t seem old anymore. While my body certainly doesn’t work as well as it once did, pre-scleroderma, and my memory is no longer as sharp, I don’t feel old. Wiser, I hope. Seasoned, certainly.

To celebrate that milestone, and the fact that both Al and I are now fully immunized against Covid (at least the original version), we spent the weekend in the White Mountains of New Hampshire. Decades ago, when we were first married, and later when our daughters were very young, we used to camp there for our summer vacation. I haven’t been back, since.

My inspiration for the trip was to see the stars from the Kancamangus Highway, which runs through the White Mountain National Forest. There are no interfering lights at night, and I can still recall the spectacular view from a visit more than 30 years ago. The weather, however, had other plans. It remained overcast throughout our trip, the sun finally breaking through on Sunday afternoon as we drove home.

But the day’s diffuse light cast its own spell, subtly revealing details otherwise missed. From Laconia’s lake shores to the Lincoln Trailhead in the White Mountain National Forest, from the Cog Rail part-way up Mount Washington to the Basin off the Franconia Notch Parkway, we immersed in rejuvenating beauty. As I reconciled myself to a birthday mountainside view shrouded in mist, the clouds suddenly lifted and we could see 80 miles. The perfect gift, and metaphor, after a long, long year.

Enjoy . . .

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.

Prepping

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Today I get my second Moderna dose. On Monday, I tried to remember to keep drinking fluids, which is supposed to ease side effects. We shall see.

I’ve also been prepping for the aftermath. Friends and family who’ve had the Moderna vaccine report a whole range of reactions, from some arm pain to brain fog to extreme fatigue to headaches to fever, lasting a day or so. I’ve cleared my calendar for Wednesday, hoping for the best but leaving space and time to deal with a stronger reaction. After my first dose, I was very tired for several hours after I drove home from Boston. We shall see.

Then there’s Passover prep. The first seder is Saturday night this year, and there’s still a lot to do between now and then. We’ve started our house cleaning, shopped for dry goods and dairy foods, and planned menus for the week of Passover. Al will finish the bulk of the cleaning this week and the rest of the shopping for perishables, but I still have client work pending and other to-dos to complete.

I’ve revised the Haggadah that I wrote last year, and we’re getting organized to have a Zoom mini seder with family on the first night. But there is still more cleaning and all the cooking to do. So I’m hoping that my second dose won’t throw a monkey wrench into the works. We shall see.

How is this week before Passover different from all other weeks before Passover? We shall see.

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: Aron Visuals

Mud Puddles

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I read somewhere that March 2020 came in like a lion and stayed. So here we are, a very long and difficult year later, and the wind is gusting outside. I take a walk on a late Monday afternoon, before the sun sets, and the chill catches me by surprise. But I keep on walking. My flannel winter mask helps to warm the air I breathe.

When there’s no one else nearby, I lower my mask to inhale more freely. As soon as I see or hear someone approaching, I raise it again. I’ve gotten quite adept at moving to the opposite side of the street as another walker appears along my path. It’s all part of our learned choreography in Covid Time.

Most people I pass wear masks, too. And most everyone waves or says hello—more so than in the Before Time, when we took passersby for granted. Now, it feels all the more important to acknowledge each other when we can see only eyes.

Where snow is finally receding, mud puddles glisten in the late afternoon light. The ground looks like chocolate pudding. I inhale the earthy scent and notice a few matted blades of green where lawns have emerged from beneath their white blankets. Mourning doves coo as shadows grow long.

It’s after five o’clock when I return home, grateful for a warm kitchen, but glad that I stretched my legs and worked out the strain in my lower back from sitting too long at my computer. The sun still illuminates scudding clouds with a golden glow. I marvel that I can walk this late in daylight.

Spring is less than three weeks away, March 20. Three days later, I get my second Moderna vaccine. Then comes Passover. I mark time with ancient rituals, miraculous milestones, and the spinning of the Earth.

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: Jock Ocularic

Good Fortune

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If all goes according to plan, by the time you read this on Tuesday, I will be on my way to getting my first Covid vaccine dose. I have a late morning appointment at Boston Medical Center. This feels like a miracle.

Just last Thursday, Massachusetts opened up vaccination eligibility to those of us aged 65 and older. The online appointment system was not ready for the onslaught. It crashed Thursday morning.

My younger daughter in Philadelphia had stayed up past midnight to see if she could snag me an appointment, but none was to be found. Later that morning, she valiantly tried again and again to see if anything was available online, but no luck. I looked a few times, halfheartedly, but had the same experience. Demand far outstripped supply.

Not only that, but our system here is abysmal. Despite all the brilliant high tech innovators who live and work in Massachusetts, for some reason, the online portal was designed backwards. Instead of there being one centralized entry point, where you register and create your user profile, then search for appointments, you have to start with finding an appointment, then fill out all the forms, and then—and only then—if the appointment is still available, can you schedule it. At one point, my daughter got through almost all the pages of forms for an opening, only to have the system crash. This was not an uncommon experience.

My theory, which fortunately proved correct, was that I’d have my best chance of getting an appointment through my specialists at Boston Medical. The hospital was a major Covid treatment center for Boston during the big surges, and they serve a high risk urban community, so there was good reason to expect they’d get a supply. I had written my rheumatologist at the beginning of February to ask if there was any way he could help. He had actually written me back a week later, but I missed the message, only finding it late Thursday. I responded, and on Friday afternoon, got a message back from one of the nurses whom I’ve known for decades.

She informed me of a number to call to make an appointment. We had a couple more messages back and forth, and then she called me and explained that, now that I was in one of the eligible categories, because I was a BMC patient, I could schedule directly with them. Not only that, but they had just received a huge shipment of vaccines that had been delayed due to all the storms in the Midwest last week, and appointments were wide open. So, I thanked her profusely and called the number. After a short wait, I reached a scheduler who even gave me multiple options for Tuesday. Hallelujah!

I have heard stories from friends who have found their own workarounds. Several have gotten on waiting lists, expecting nothing, only to be surprised by a call a few days later about leftover doses. Others have found medical sites that were giving shots to 65+-year-olds even before that category opened up. Still others know front-line workers who will call them if there are leftover doses at day’s end.

It’s all about connections, right now. Even as I’ve worked my own, it shouldn’t have to be that way. You’d think the Powers That Be would be sure there were enough doses to meet demand before opening up a new eligible cohort of hundreds of thousands of citizens. From reports I saw, on Thursday, however, there were just 70,000 doses, which got snapped up, somehow, in-between website crashes. So those who cannot wait any longer—my social worker husband, now fully vaccinated as of Friday, thank goodness, sees clients every day  in their homes, which increases his risk and mine—must be resourceful.

As more vaccine becomes available, and, I hope, the process is streamlined, this mishegas will be just another story to tell someday about how we got through the Great Covid Pandemic. To all of you who are waiting and searching and hoping to get your vaccination soon, I wish you patience, ingenuity, persistence, and luck.

The true miracle, worth remembering, is that powerful vaccines are already available, even if the roll-out has been choppy, for avoidable reasons. For that, for getting my first dose today—and most of all, for staying clear of Covid, as far as I know, for nearly a year—I am truly grateful.

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: Bianca Ackermann

Ray of Hope

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In the New York Times’s Morning Brief on Monday, editor David Leonhardt made a really important observation about the Covid vaccines: they’re more effective than we might think. He notes that the percentage effectiveness data we’ve seen so far—about 95 percent for two shots each of Pfizer and Moderna—sounds good but not perfect. But Leonhardt explains that effectiveness data actually understate the true impact of the vaccines.

When effectiveness data are calculated, mild cases post-vaccination are counted as failures. But a mild case of Covid, at least as far as we know, is more like a typical case of the flu. Leonhardt doesn’t address the unknowns of long-term effects of the disease, regardless of severity, which remain a black box at this time. But his point is that, even if you contract the virus after vaccination (low probability, at least, for the first two vaccines to be approved by the FDA), the chances of contracting severe, hospitalizing, deadly Covid is pretty much nil.

As this article about the Moderna vaccine in Science puts it, Moderna’s vaccine “had 100% efficacy against severe disease.” That same assessment is echoed in this article by Harvard infectious disease specialist Paul Sax in The New England Journal of Medicine. Writes Sax: “First, the [Pfizer and Moderna] vaccines prevented not only [almost] any disease due to SARS-CoV-2, but—quite importantly—severe disease. Prevention of severe disease could convert Covid-19 from the global threat it is now into more of a nuisance, like the common cold.” He also notes that “some protection became apparent just 10 to 14 days after the first dose.”

Even the yet-to-be-approved Johnson & Johnson vaccine (66 percent effective) and Novavax vaccine (89 percent effective) need to be understood in the same way. While data indicates that more test subjects contracted Covid than with the Pfizer and Moderna vaccines, the lower effectiveness percentages don’t communicate that these vaccines still prevented severe disease among those who got Covid post-vaccination.

So, as we all hunker down, awaiting our turn for a shot, amidst scary news of the new super-spreading Covid variants, there’s good reason to feel more optimistic. And we can each help others stay healthy, after we’re fortunate to have been vaccinated, to keep wearing those masks to avoid any chance of spreading mild or symptom-free Covid to others who are not yet protected.

It may sound trite, but it merits repeating: We are truly all in this together.

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: Thom Holmes