Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

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

Ever Since

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Last Thursday afternoon I got a call from my cardiologist’s nurse. She was checking in on how I was doing with my heart study, if I’d had any issues or symptoms. So I told her that the monitor had collected plenty of data, given that my arrhythmia had been quite active at various points over recent weeks.

Especially on Wednesday, during the violent siege on our nation’s Capitol. Watching the rioters, I was horrified. I thought of my mother, now long gone, who was 10 years old in Berlin during the Reichstag Fire in February 1933 that cemented the Nazi’s rise to power.

“They’re saying it was Antifa,” the nurse told me, in a confidential tone. She began to recount the latest distortions of what we had all witnessed on live television the day before, rioters breaking into the Capitol beneath fluttering Trump banners and the Confederate flag. I tried to stop her, but she went on enthusiastically for a few minutes.

Finally, I interrupted. “No,” I said, “it was not Anitfa, it was Trump supporters who stormed the Capitol, but I don’t want to get into an argument with you about it.”

She deftly switched back to my heart study and said she would put my cardiologist on the line. I did not mention to him what she said.

But I have been thinking about it ever since.

This woman is a person with empathy. She spoke to me very kindly about my symptoms. I’m sure she’s a fine nurse. She was also spouting very dangerous rhetoric, which she clearly believes.

Words matter. Lies repeated, amplified, matter. Facts, evidence, truth, critical thinking—all matter.

So does our ability to see the humanity in each and every one of us.

I am praying for our country, for our president-elect and vice president-elect, and for a peaceful transition of power on January 20. I am praying that the maelstrom of lying and distortions will finally, finally, spin itself dry. I am praying that we can truly hear one another, seek common ground, and collaborate for the common good to solve the enormous problems facing us and the world.

After one of the darkest days in our nation’s history, let there be light.

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: Andy Feliciotti

Disconnect

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Monday morning, I woke up with mild vertigo. This happens every so often. An ENT doc once explained to me that there are tiny crystals in your inner ear that can get displaced and cause the dizziness.

Or something like that. I can’t look it up, because our internet went down around 9:45. As I write, about six hours later, it has yet to come back. Our cable company’s recording says they are working to repair a damaged fiber optic cable. No estimate as to when we’ll be back online.

So, I am hoping that both my vertigo and our lost internet are just minor setbacks for the day and not bad omens for our bright, shiny New Year.

Meanwhile, I’m adapting to the day’s forced slower pace. I postponed one group Zoom meeting and held my other meeting the old fashioned way, by phone. Without emails to read and write, I drafted correspondence to send later. I’m composing this post in Pages, rather than directly into my blog, so it will be ready to cut and paste when the internet comes back.

At the same time, I feel like I’m bobbing in limbo. This sensation is not helped by the vertigo. The sun is already casting long shadows outside, and there is no update from our cable company. I trust that the internet will eventually come back on, and that my sense of balance will settle again in a day or two. But that doesn’t make the waiting any easier.

Not unlike how so many of us feel disoriented and stymied every day by the pandemic in our ability to accomplish the simplest tasks. But I could do without being caught in a microcosm today.

On the plus side, I can’t doomscroll, either. . . .

. . . Later that night:

Internet revived around 6:30 p.m. Postponed meeting was productive. And, of the 75 emails that downloaded when I regained service, only about five were worth reading. Still have some vertigo (here’s an explanation of those displaced crystals), but not too dizzy to keep me from writing. At the end of the day, that’s what matters most.

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: Radvilas Seputis

A Tale of Two Visits

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I had two visits with my Boston Medical Center physicians last week—one, in person with my new rheumatologist, and a second, via video chat, with my cardiologist. Both had been scheduled months ago, but it afforded me an interesting opportunity to compare the two modes of doctor’s appointments.

My in-person visit went well. I was very glad to see my doc and have a good long conversation with him. He gave me plenty of time to discuss my health and any concerns, and was able to answer all my questions. It was more of a schmooze than a strict, all-business visit, and I think being there helped to make that possible. Having that time—we spoke for about an hour, with only a brief interruption—made the commute worth it.

The downside was just the stress of being there, with all the Covid concerns. First off, I had forgotten that the parking garage requires you to touch a button to get your parking ticket. I did this with gloves on, but how many people don’t? It’s a virus magnet.

There was the inevitable challenge of door handles, elevator buttons, and using a public restroom. I got past all those hurdles with extra vigilance and disposable gloves, which I kept on until I went into the exam room. I used plenty of hand sanitizer, with and without gloves. The medical center checked temps and symptoms upon entry, handed out masks with a pair of forceps, and limited occupancy of elevators and waiting rooms. It simply was not as crowded as usual. And the big test, one week out, I have no Covid symptoms, thank goodness. So, that’s a huge relief.

On Friday, I spent a half-hour on a video chat with my cardiologist, whom I’ve been seeing for decades. The only drawback was a slight hiccup in the video signal that almost kicked us off to a phone call, but fortunately, the signal stabilized. We had a very thorough conversation, which was as good as if I had seen him in person. And no stress of driving or dealing with the public space.

So, given the choice—seeing as I’ve now had a good personal visit with my new rheumatologist and made a real connection with him—I think I’d prefer sticking with telehealth until I’ve had the vaccine and am in the safe zone. The stress of Covid vigilance is intense for me. My blood pressure at BMC was much higher than normal, and that’s probably the reason (back to normal at home).

And it sure beats traffic.

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: Jason Dent