Living with Scleroderma - Reflections on the Messy Complexity of Chronicity

Two Weeks and Counting

Evelyn Herwitz · October 20, 2020 · 1 Comment

We voted on Sunday. No fanfare, no lines, just drove to a ballot drop-box outside a city fire station near the site of what was once Al’s dad’s pharmacy. A bottle of hand sanitizer sat atop one of the two drop-boxes there. Only the polished red fire engine, parked inside the glass-windowed garage, watched over us as we deposited our Massachusetts ballots. It felt good.

I never debated whether to vote in person this year. Given scleroderma, I have no desire to expose myself to more Covid risk while standing in a long line or from handling shared marking pens (we still do paper ballots here). We’re very fortunate in our fair city to have easy access to ballot boxes at all fire stations, City Hall, and outside polling places that are now open for early voting. Others are not so lucky, and options, more limited—a serious issue that I hope will be properly addressed long before the next presidential election.

Still, I admit that I missed the thrill I get whenever I have voted in an election, especially for the president. There is just something so powerful about fulfilling that sacred act of citizenship. I always like to watch the number of ballots cast increase by one as my paper ballot is sucked into the ballot machine. I like getting my “I Voted” sticker. I like feeling part of a civic action that is so essential to our democracy.

But this year, in so many ways, is different. So I will take joy, instead, from the serendipitous rainbows that scattered across my ballot before posting this weekend, when sunlight briefly refracted through my crystal pen holder. I captured the image with my phone camera just as it looked like my pen was shooting optimism. I’ll take that as a good omen.

Here’s a great resource for voting information throughout the U.S. If you haven’t yet voted, please make a plan to vote this year and follow through. With only two weeks to go, we all need to step up. The future of our democracy is on the ballot.

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.

Dress Rehearsal

Evelyn Herwitz · October 13, 2020 · 1 Comment

Last week, we had a Covid scare. Al woke up early Tuesday morning, sick to his stomach, with a fever. This is highly unusual for him. At any other time, I would have just assumed he’d caught a GI bug, but given that COVID-19 can occasionally present with these symptoms, we immediately went on high alert.

I spoke to our clinic twice that morning and was basically advised to have him isolate, hydrate, and take Tylenol to control his fever, which had gone up to 101.1. We have a pulse oximeter that I’d purchased months ago, just in case one of us had Covid symptoms, and I had him check his oxygenation level, which was fine at 98 percent.

I spent the next few hours trying not to freak out. I tried to concentrate on how he was doing as well as my work. A planned Zoom call with one of my clients, who is also a longtime friend, helped me regain some perspective. I dug into my writing, which is a meditation for me. By afternoon, Al was doing better, able to make arrangements for coverage for his social work responsibilities, and his temperature had settled around 99. He was able to drink fluids. And he slept.

But I would be lying if I didn’t admit I was really scared. Both of us are over 65, with health issues that put us at risk for serious Covid complications. I tried to schedule Covid tests for that day, but couldn’t get anything until Wednesday morning. So, like millions of other Americans finding themselves in this terrifying dilemma, we had to just sit tight and wait to see what happened.

By bedtime, Al was looking and feeling a bit better, able to eat a few rice cakes. (I’m a strong believer in the BRAT diet for stomach distress—bananas, rice, applesauce, tea/toast—with rice always the first step.) Just as he was settling down in a separate bedroom, and I was ready to go to bed, I suddenly remembered that the nurse had told me to monitor his oxygenation level. If it dropped below 95, I was supposed to let them know.

So I gave Al the meter for him to measure his levels. I was being very careful not to come into his room, per all the CDC guidelines. Three times he measured his levels with the finger-clip meter on three different fingers, and each time, it came back 88. How could his levels have dropped ten points with no sign of respiratory distress? But I knew this is one of the hallmarks of Covid: your lungs can be overworking before you actually sense it, which is why these readings at home are so important.

After a long discussion with the clinic, I was advised to bring him to the ER. We arrived at Midnight, but, of course, I could not go with him. He texted me as soon as I walked in the house that he was already in a room, and that his pulse/ox was 96 percent. So, obviously our meter was off. I was very relieved, though still confused.

Three hours later, after he’d had a clear lung Xray and other negative lab work, plus a Covid test (results in 48 hours), plus IVs and potassium to replace his lost fluids from the morning, I picked him up and brought him home. His ER doctor did not suspect Covid, which was also a relief. We both went to bed.

A few hours later, I got up and went to a nearby clinic for my own Covid test, just to be on the safe side. It was much easier than expected, a well-organized drive-through tent, and only the base of my nostrils were swabbed, no dreaded brain scrape. Throughout the rest of the day, Al continued to improve, and by evening, his temp was normal.

On Thursday afternoon, we both got our test results back: Negative. Hallelujah!

And what of the mysterious 88 pulse-ox reading? I realized, on Wednesday, that 88 is the default reading on the meter when it’s on but can’t register a measurement. Sure enough, the rubber pad inside the finger clamp had come off, so the meter had broken. If I’d taken the reading myself for Al, I would have known. But at that late hour on the first day, I was way too exhausted to think clearly and figure that out.

In any case, I’m glad he was seen that night, inconvenient as it was, because we found out his lungs were fine. Here’s hoping the copay isn’t outrageous.

Of the many lessons learned, here are my takeaways:

There are plenty of viruses out there that are not Covid. We have to be extra vigilant, but each sneeze, cough, or upset stomach may just be routine, rather than exotic and deadly. The biggest red flag last week was Al’s fever. As hours passed, the fact that his temp went down and his appetite returned was a good indication that all he had was a run-of-the-mill virus.
I need to get a better pulse oximeter and, if needed, read the results myself if Al is sick.
It will take extreme precautions, if one of us gets Covid, God forbid, for the other to be the caretaker and not get sick. I never got Al’s stomach bug, thank goodness, so I must have been doing something right. But there are so many touch points to avoid, so many tiny details to be aware of—how do I wash his dishes v mine? how often should I change gloves? can I safely clean up after him when he’s sick and not contaminate myself without wearing PPE?—that in a house our size, not small, but not huge, either, it will be a real challenge. (All the more so for those who live with multiple family members in small apartments. The whole situation infuriates me, but that’s another post for another time.)
It is all the more important for both of us to be extra careful with masks and hand hygiene when out in public. I don’t want to have to go through this for real.
I’m very grateful to have Medicare and Medex coverage, and to live in Massachusetts, where we have aggressive contact tracing and plenty of free Covid testing sites. We were told we’d get results in a few days, but actually, we both heard in under 36 hours.

Bottom line: we dodged the bullet. Here’s hoping this was only a dress rehearsal for a play that will never open. Stay well, all.

Image: Gwen O

May We Be Healed

Evelyn Herwitz · October 6, 2020 · Leave a Comment

May I be healed.
May you be healed.
May we be healed.

Years ago, I learned this meditation. It’s more resonant now than ever. As I write, according to the Johns Hopkins COVID-19 dashboard, there are 35,272,679 souls around the globe who are infected with COVID-19. Of those individuals, each grappling with the fear and suffering of this insidious virus, are 7,426,686 people here in the U.S., including the president. Worldwide, 1,038,307 people have died from Covid and its complications; 209,857 were Americans. All, with their own hopes, families, dreams.

By the time you read this, the pandemic will have claimed more victims.

May I be free of suffering.
May you be free of suffering.
May we be free of suffering.

We will never know how many lives would have been saved it everyone had complied with social distancing and wearing masks in the early days of the pandemic. I have seen estimates as high as 100,000 lives. Projections by the University of Washington’s Institute for Health Metrics and Evaluation (IHME) indicate that more than 363,000 Americans will have died from Covid by January 1, 2021, if we continue on our current trajectory. With universal masking, the model projects 277,000 total deaths. That’s still far too many. But 83,000 lives could be saved.

Think about it. By simply wearing masks, we could prevent the equivalent of 9/11 happening every day from now until the November 3rd election.

May I be full of self-compassion.
May you be full of self-compassion.
May we be full of self-compassion.

I wish this disease on no one. If any good comes of the president’s Covid infection—and the infection of so many in his orbit—I hope it will be a profound lesson in the importance of wearing masks in public. I fervently wish everyone would think beyond themselves and commit to the greater good of the community at large. Our partisan divide is now deadly, with masks or masklessness reduced to symbols of party affiliation. Enough, already. This past weekend’s news is the clearest evidence, yet (as if we needed any more) that large gatherings without masks, particularly indoors, will increase the risk of contracting Covid.

We need to take care of ourselves and each other. It’s scary enough, at the first sign of the slightest congestion, or cough, or sneeze, to wonder and worry that this may not be a simple cold, but Covid. All the more so for those of us with chronic auto-immune diseases and other serious medical conditions. Public masking is imperative.

So is voting. Our health as a people and a nation and a planet are all on the ballot this November. Make your voice heard.

May I be healed.
May you be healed.
May we be healed.

Image: Jay Castor

Job 1

Evelyn Herwitz · September 29, 2020 · 2 Comments

Well, my blog is late this week. But I have a good excuse. A few, actually.

Usually, I write on Mondays for Tuesdays, but this Monday was Yom Kippur, so I intended to write on Sunday for Tuesday. But on Sunday, Al and I spent all day cleaning and reorganizing our kitchen, which had been out of commission because we had our maple wood floor refinished over the course of Wednesday, Thursday, and Friday. I could have thought ahead and written this blog any one of those days, but I didn’t.

Or, rather, having kitchen stuff all over our living room, dining room, and in the garage for the better part of the week just really threw me off. Floor refinishing is a big, messy, smelly job that requires removing anything that could attract a film of sawdust. There was something about having one of the most-used rooms in our home inaccessible, and all the stuff that was on the kitchen floor, counters, and walls cluttering up the rest of the house, that just felt chaotic.

Because of the way our house is constructed, the kitchen floor—which had become very worn and marred in the 21 years we’ve lived here, and suffered some water damage recently that prompted the job—extends into a little hallway to a half-bath and the basement door. We have a second fridge in the basement, but the only way to access it for meals was to go outside, around back, open the storm-cellar doors, and get in through the basement backdoor. The weather was good, so we could at least eat out on the deck. Needless to say, I got in plenty of steps with every meal. But that routine was also disruptive.

Tuesday, midday, as I write, everything is back in place. We can use our kitchen again. It’s really amazing how I can concentrate better. The kitchen floor looks great, we improved some of the organization, and the room is cleaner than it’s been since we moved here, I am sure. Order begets focus. Disorder begets mental fog.

Which brings me to the obvious parallel with Covid Time. We’re all discombobulated by the pandemic’s disruption and health threats. Our “new normal” isn’t really normal, it’s just a very long holding pattern, in which we’ve (hopefully) been able to establish new routines and ways of structuring time. How doable this is depends in large part on health and financial stability. I’m extremely grateful that, so far, we’ve been able to maintain a secure foundation during the pandemic.

Knowing that I have to live with the confusion and nuisance of a closed-off kitchen during a messy refinishing job is a minor inconvenience with a known end point—and a definite benefit. Living through a pandemic without clear, universally accepted public health guidelines, without extensive testing and contact tracing, and in a divided and divisive society where mask-wearing—the best defense against spreading the deadly virus—is a political litmus test, is enough to make anyone feel lost.

We can’t change the reality of COVID-19, but we can certainly change the trajectory of this terrible pandemic with common sense public health policy. Voting has started in many states across the U.S. Make sure you’re registered. And vote this fall as if your life depended on it. Because yours, mine, and everyone else’s does.

Role Model

Evelyn Herwitz · September 22, 2020 · 2 Comments

On my desk, I have a figurine of Ruth Bader Ginsburg, a gift from my younger daughter. She is dressed in her black robe and trademark lace collar, and she holds a gavel in her hand. Her face is stern, owlish, with large glasses, her hair pulled back tightly against her scalp. She is not quite five inches tall.

The real Justice Ginsburg was barely five feet tall. But what a legal giant in that slight frame. We owe her such a huge debt for so many legal rights that we could easily take for granted—particularly for all of her fierce advocacy as an attorney and for her landmark opinions as a Supreme Court Justice that established the legal precedent that the 14th Amendment’s equal protection clause outlaws discrimination based on sex.

She was also a consensus builder, and her deep friendship with Justice Antonin Scalia, whose legal opinions were often at the opposite end of the ideological spectrum, is legendary.

I learned of her passing on Friday just as we were sitting down to dinner for the first night of Rosh Hashanah, the Jewish New Year. I was stunned, heart-sickened. Then I stopped to think how this extraordinary woman, who had fought and beaten cancer multiple times, was finally at peace.

Would that be so for our country. Now the fate of the Affordable Care Act, with its protections for people with pre-existing conditions like scleroderma and so many other devastating diseases, hangs in the balance, with a challenge to the law’s constitutionality scheduled to be heard by the Supreme Court the week after the November election.

Legal observers had predicted that the court would decide to uphold the ACA, as it has in past challenges, by a 5-4 opinion. But with Justice Ginsburg’s death, the court could render a 4-4 tie, sending the case back to the 5th Circuit Court’s ruling that the law is unconstitutional. Or, if the Republican Senate succeeds in its bid to replace Justice Ginsburg with a conservative justice even before the election, the court could overturn the law. The result for 20 million Americans who buy their health insurance through the ACA marketplaces, or who have gained Medicaid through the law’s expansion in recent years, will be chaos.

I’m saying a lot of prayers these days for our country, that our democracy hold strong against the forces of division, that Americans’ basic common sense and fair mindedness holds sway, that our better angels prevail. I think of Justice Ginsburg and hope I can summon the courage and determination she demonstrated through her long and illustrious career to do my part. There is too much at stake to take anything we hold dear for granted.

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