Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

COVID-19

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

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

Liminality

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For a few minutes on Monday afternoon, clumps of snowflakes swirled in the air, large as silver dollars. I was scrolling through my Twitter feed while eating lunch, checking for news of violence in D.C. or state capitals. There wasn’t any, thank goodness. The snow was brief, and did not stick.

I feel as if I am spinning like those snowflakes, neither here nor there, caught in liminal time and space, somewhere on the invisible threshold between states of being.

I go about my work and meetings on ephemeral Zoom, catch up on correspondence with friends and family, tell Al to “be safe” when he goes out to see his clients and do their grocery shopping.

I recheck our state’s Covid website to see if there are any new announcements about vaccine availability. There are none. I check the time and count the hours until Wednesday’s noontime Inauguration.

I look at surreal images of our nation’s capital, thick with masked men and women in camouflage, carrying arms—this time, in service of our country—and am both relieved and so very sad that it has come to this.

I remember to meditate before breakfast, but forget to walk after lunch. Daylight wanes as another 24-hour cycle wheels past or through or into memory.

My memory isn’t as sharp as it once was, so I write, so I know that I really was here, in this strange time and place that will someday be the subject of countless doctoral theses and historical treatises. I imagine colloquia and documentaries and debates, far into the future, about the forces that shaped our present, when people will wonder how we let it happen. They will have the advantage of knowing how it all turned out. But we must remain, here, and wait, and wait.

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: Darius Cotoi

Next

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I don’t know anyone who can’t wait to give 2020 the boot.

This long year of grief, loss, anger, hated, injustice, hunger, illness, forest fires, super storms, deception, confusion, fear, so much fear, has left deep wounds that will take years to heal.

Will 2021 actually be any better? January 1 is just the day that follows December 31. It only feels different because we deem it so.

But we’ve learned a thing or two this awful year about wrestling with risk and uncertainty and adapting. And we can decide to push the reset button whenever we want. Not just on January 1, 2021, but on every new day that dawns. It is really up to each and every one of us to choose to do better, be kinder, act with courage, speak out, bridge misunderstandings, lend a helping hand, smile at a passing stranger (even with only eyes above masks), give thanks for what we have rather than focus on what’s missing.

By this time next year, I hope and pray the pandemic is but a blurred memory, our government is no longer a perpetual dumpster fire, commitment to justice for all is our lived priority, controlling climate change is a given, and that our lives, if never truly returned to normal, whatever that means, are at least more joyful.

It’s up to us to make that happen, moment by moment, choice by choice.

So, bring it on, 2021.

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: Aaron Burden