Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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

Dormancy

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There was a table set out under a tree in front of the house, and the March Hare and the Hatter were having tea at it; a Dormouse was sitting between them, fast asleep, and the other two were using it as a cushion, resting their elbows on it, and talking over its head.

—Lewis Carroll, Alice’s Adventures in Wonderland

It is mostly white outside. Although recent snows have melted or sloughed from the yews outside my window, the ground is still hidden beneath a thick coat. The crust is soggy with Monday’s mist. Soon it will sparkle and crunch. We expect a half-inch of ice Tuesday along with another few inches of snow.

February, according to the poem we used to recite as kids, is supposed to bring the rain and “thaw the frozen lake again.” Not so anymore. While it seems counterintuitive, climate disruption caused by global warming has triggered a polar vortex that is sweeping the U.S. with record-breaking cold, ice, and snow. Nothing to do but wait it out.

In the midst of all this waiting—for spring, for a vaccine, for sanity and comity to prevail in our troubled nation—I am reading a wonderful book of essays by Katherine May called Wintering: The Power of Rest and Retreat in Difficult Times. Writing through the course of a hard year, when she had to leave her faculty position to deal with an uncertain illness, May reflects on all the ways that slowing down, withdrawing, and quiet are essential to the cycle of renewal.

She writes of the buds on trees that form in late summer and remain dormant throughout winter, conserving energy for spring; of ephemeral traces of the aurora borealis that hover in the sky above the Arctic Circle; of seeing sunrise at Stonehenge on the winter solstice and what it means to pray; of the hibernating habits of dormice.

The latter particularly caught my fancy. I did not know that dormice conserve nutrients in their tiny bodies after gorging in late summer and autumn, then, in October, curl into little balls no bigger than a walnut, drop their body temperatures to match their surroundings and become dormant as tree buds, waking slightly every ten days to flush toxic wastes from their systems, and not fully rousing until May. They are also simply adorable. And endangered by climate change that is shrinking their habitats.

We have much to learn from the natural world about appreciating the gift of darkness and cold, which cues us to rest more, to ease the hectic pace of our incandescent-light-filled-homes and offices, to reflect and see and wonder. The pandemic has forced our collective hand. We’ll all be glad when it’s safe to go out. We’d be wise to take the lessons of this long hiatus with us when we do. But for now, with another winter storm on the way, maybe it’s just fine to curl up in a ball, and sleep, and dream.

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.

Images: Hibernating hazel dormouse found in a birdbox in Central Germany, March 2016, by Zoë Helene Kindermann, Wiki Commons; Dormouse in August, Aosta, Italy, August 2005, by Hectonichus, Wiki Commons.

Tick-Tock

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Today’s announcement: I have entered the world of wearable health tech. This was not planned. In fact, it’s something I’ve avoided, because I didn’t want to obsess about how many steps I’ve taken each day. However, I learned some things from my heart study that made this a priority. So I am now wearing my new Apple Watch, which has already proven its worth.

Back in December and early January, as I’ve written previously, I did a three-week Holter monitor study, because my arrhythmia had been very active in recent months. And, as expected, the study validated my observations, fortunately with the reassuring news that my annoying arrhythmia is still within the normal range of abnormal, as it has been for decades. A nuisance, more than anything.

However, the study also recorded a more concerning development, one 15-second episode of a Type 2 Heart Block. There are two types of Type 2 Heart Blocks, and true to form, mine was the more complicated, which involves a blockage of certain electrical signals so they don’t transmit properly and the heart slows down. In my case, I had no symptoms of my heart rate slowing, because one part of my heart doubled the number of electrical signals it was sending, but only half of those transmitted, so the result was my normal heart rate.

This was rather disturbing news. I’ve known for years that scleroderma can cause changes to heart tissue over time. I had a long discussion with my cardiologist about this several weeks ago, and we agreed that I needed some way to keep monitoring my heart in case I do experience episodes of sudden light-headedness or dizziness going forward. This has happened to me on occasion over the years, but even though I felt weird, it was so infrequent that I just let it pass. The options were: (a) a mini portable ECG monitor that I could use to record readings and then email reports to him; (b) an Apple Watch, which has an ECG app that I could use to do the same; or (c) a small chest implant that would monitor my heart for three years.

The implant was a non-starter. The mini portable ECG was the most affordable, but a nuisance to carry with me all the time. So, I went for the watch. Fortunately, I could afford it. Not cheap, but a powerful little computer to wear on your wrist with many useful features.

I put the system to the test recently, when I got quite stressed one Friday evening when I was trying to reach Al and could not get hold of him (it all worked out, but it was one of those days). My arrhythmia kicked up big time, so after Al got home and all was well again, I took several ECG readings on my new watch. I picked the first and the last when I felt back to normal, and emailed the PDFs from my iPhone to my cardiologist with a note. Within a half hour, he wrote me back that these were the “okay” kind of extra beats, so no problem, but to keep him posted. We’re catching up again this Friday.

This was very reassuring. I’ve had no cause to send any more ECGs since then, but I am now learning to use my watch to track exercise. It’s always been clear to me that my heart feels better when I walk, but I’ve been avoiding it because of the cold weather. Now, however, I have a big incentive to get moving. And I have a very cool way to keep track of steps, exercise, calories burned, and general movement. Already, I’ve pushed myself out the door for walks that I wouldn’t have taken before all of this. I’ve tried out a fitness routine. And I do feel a little better for it all, so far.

It’s been a month of coming to terms, or, at least, beginning to come to terms with the fact that this very ornery disease still has some curve balls to throw at me. I have lived with scleroderma for nearly 40 years, now. I’ve been fortunate that my disease has always moved slowly enough for me to learn how to compensate. With the help of some amazing tech and a wonderful cardiologist, I intend to continue doing just that.

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.

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

Vaccine Powerball

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Have you received the Covid vaccine, yet? That’s the Big Question in all my conversations with family and friends, now that we have a new president and science is once again taken seriously.

So far, the biggest winner of the vaccine lottery in my family is my sister, who bravely volunteered for the Moderna vaccine trials last fall and won the jackpot when she learned last week that she got the real thing. Thanks to her and thousands of other willing guinea pigs, we’re all going to be safer in coming months.

Next is my eldest daughter, who received her first Moderna shot on Friday, and Al, who is scheduled for his first Moderna dose on Tuesday afternoon. Both are social workers involved with home care, which put them in Phase 1 here in Massachusetts. Twenty-eight days from their first appointments, they will get the second dose. Then it’s a two week wait for the vaccine to be fully effective.

On Monday I learned that Phase II here begins February 1 for persons 75 and older. Those of us 65-plus, also those with co-morbidities (two check marks for me) are next up, with appointments coming online in mid-February. Counting the days . . .

While our daughter was able to get her shot through her employer, Al was on his own. We learned on Thursday night that he was now eligible (as opposed to original estimate of early February), so on Friday morning he contacted his boss, who had also just received the news from state officials, and Al got the link for the state attestation form that documents his status as a home care worker. Then began the hunt for an appointment.

I had already downloaded the contact information from the state website for vaccination sites in our area. But the first site, a Walgreens, (a) had an appointment page that lacked an option for the Covid vaccine and (b) was out of doses through this week. Another site was closed on Friday and not answering their phone. The third site had no appointments available for weeks.

There is a huge drive-through site at Gillette Stadium, home of the New England Patriots, but that’s a 90 minute drive from here. Nonetheless, I began checking for appointments, but found nothing. Then, in the midst of this increasingly frantic search, our rabbi happened to call me, and when I told her our predicament, she mentioned another site, maimmunizations.org. This website had one universal form to complete and more vaccination locations listed, so I began flipping through them to see if I could find anything for Al.

At first, it seemed like every available time slot was taken. I clicked on one rare opening, only to have it snapped up a split second before me. I was almost about to give up when another appointment at a local site suddenly appeared (nothing was open when I had checked that same date and site a few minutes earlier). So I grabbed it. Felt like a game of wack-a-mole.

I hope, by the time appointments open for my cohort, there will be more sites, more vaccine, and a more effective appointment interface. Meanwhile, I’m laying low, avoiding in-person shopping as much as possible. Al is out and about because of his work for his clients, but he’s agreed to double-masking when shopping, as an extra precaution.

Such a strange, strange time. At least the days are getting noticeably longer. Stay safe, Dear Reader. Stay safe.

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: dylan nolte