Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

Booster

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Last Thursday afternoon, on my rheumatologist’s recommendation, I got my third Moderna vaccination. CDC guidance has been confusing of late regarding boosters, but for people who are immunocompromised, the advice has been fairly consistent to get a third shot. Just who qualifies as immunocompromised, however, is also subject to interpretation.

People who are receiving active cancer treatments, have received organ transplants, stem cell transplants, have advanced or untreated HIV infections, or are receiving high-dose corticosteroids or other drugs that suppress the immune system are advised to get the third shot. In general, the CDC recommends that anyone “moderately or severely immunocompromised” get the booster now, because of Delta’s high contagiousness and questions about whether immunocompomised people have been able to mount a strong enough response to the first two doses.

Still, scleroderma was never on the initial list of conditions for the first round of vaccines back in the winter. So I wasn’t sure what would happen when I went to my local pharmacy to get my booster.

The first obstacle I ran into, however, wasn’t about whether I qualified. It was about what shots were offered. My local Walgreens, where I get all my prescriptions, only gives out Pfizer, as it turns out. So I went home and went online to see where Moderna shots were offered. The pharmacy at my favorite supermarket was listed as giving all three—Pfizer, Moderna, and Johnson & Johnson. But when I got there, that day they were just giving J&J shots. So I called another Walgreens that my local store had mentioned, and, indeed, they had Moderna and were giving boosters.

Three’s a charm. Not only did they have the right vaccine for me, but also, their consent form had a category of “other” autoimmune diseases, so I could honestly check that box. I had told them that my rheumatologist recommended the booster, which helped, too.

As for the experience of getting my third shot, I did not have as strong a reaction as I did the second time: no Covid rash on my arm, less fatigue. I was able to get stuff done that evening and next day. However, my joints flared, once again, and my Reynaud’s went into high gear. My rheumatologist had told me to try to avoid analgesics, like ibuprofen, because there are some indications that they can suppress the immune response in the first few days. I waited as long as I could, but I really needed the meds for my joints or I wasn’t going to get any sleep.

By Saturday morning, I felt like myself again. It’s now been almost two weeks, and I’m feeling more confident that I’ve done what I could to protect myself and those around me. I still wear a mask everywhere when I am indoors or in an outdoor crowd. I suspect we’ll all need to be doing that for some time to come.

I hope you, too, Dear Reader, consult your specialists and determine when and if it makes sense for you to get a booster—or your initial dose(s), if you have not already. Together, we can beat this terrible pandemic. Together, we must.

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: Ivan Diaz

Blast from the Past

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Last week, a longtime friend sent me this photo. That’s me, with the dark hair, standing. The year is 1980, I’m 26 years old, a graduate journalism student at what is now the University of Illinois Springfield.

My friend is seated to the left, and our third classmate is to the rear. The guy with the beard and plaid 70s jacket was our news director at WSSR-FM (now WUIS-FM), the Springfield NPR affiliate.

My first reaction to seeing this on my social media feed was laughter. Were we ever that young? Did I ever have that much hair? No glasses, either—that was back in the day when I wore contacts.

Lots of nostalgic memories of covering the Illinois Statehouse during the 1979-80 legislative session, including the infamous June 1980 defeat of the Equal Rights Amendment, which effectively killed it nationwide (until now, when ratification efforts have been revived). I covered the ERA debate for NPR as a stringer, even interviewed ERA foe Phyllis Schlafly once on the phone, a master of the 20-second partisan soundbite. (If you watched Mrs. America on Amazon Prime recently, you’ll know whom I’m talking about.)

As I studied the photo, I zoomed in on my hands. I have very few images of my adult hands before scleroderma. I had forgotten how long my fingers were. As I thought about this some more, I realized this picture was taken the year before I developed the first symptoms—in my case, swollen fingers and migrating arthralgia (as in, pain in a knee, then a few hours later, pain in a shoulder, on and on). I’d had Raynaud’s for years, but only thought of it as a nuisance.

It’s one thing to see a nostalgic picture of your younger self, quite another to see yourself caught in amber, before everything changed.

Yes, I do miss my young hands. But I can no longer remember what they felt like. And I’m not sad. In fact, you couldn’t pay me enough to go back to being 26 years old in that life, at that time. The year after that photo was taken, I moved to Massachusetts, my first marriage broke up, I lost my new job as News Director at our local NPR affiliate due to Reagan-era budget cuts, and I was stressed, to say the least. I believe it is no coincidence that I began to experience strange auto-immune symptoms, even as I had no clue what they were. Though there are no definitive studies that prove a causal relationship between stress and autoimmune disease, there is some pretty interesting evidence that such a connection is likely. From my own experience, I can certainly report that constant triggering of my fight-or-flight adrenaline response when confronted with all of those changes and losses at once did not do my health any good.

Forty years later, I have compassion for that younger me. She did not know what she was in for, but she discovered a deep reserve of grit that she never knew was there until she needed it. None of us ever knows, beyond the moment we live in right now, what is next. As we all find ourselves in our current heightened state of angst and unknowing, only one thing is certain—we’ll find out when we get there. May we all learn how to make the best of it, better than we could have ever anticipated.

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: University of Illinois Springfield

 

Rx for TP

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The Great Toilet Paper shortage may have eased for now, but in recent months, when little was to be found on grocery store shelves, I found myself confronted once again with challenges of personal hygiene. As I’ve written before, cleaning up after #2 is not easy when your hands don’t work well. This has been exacerbated for me recently with painful calcium deposits in the pads of both thumbs. But with toilet paper a scarce commodity, I’ve had to be conscious of conserving paper—as any of you with scleroderma well know, that makes it extra hard to really do the job.

For several years I relied on “flushable” wipes, which are a very efficient solution. But I had to give up after the second of two disastrous lessons in the physics of sewer line back-ups into our basement. As our plumber said, there’s no such thing as a flushable wipe. Indeed, not only do they clog plumbing, but also those wet wipes that make it into the sewer system cause major problems in public waste sanitation systems, creating what the industry terms “fatbergs” that destroy expensive pumps.

After our trip to Greece last summer, where you quickly learn to toss all toilet paper in the handy waste basket next to the toilet, because the plumbing and sewers can’t handle even regular toilet paper, I tried a modified approach of disposing my wipes, wrapped in more toilet paper, into the bathroom waste can. But this uses a lot of paper, once again, and the wipes are also still not biodegradable. Moistening toilet paper with water doesn’t work well, either, if (a) you have bandages that you don’t want to get wet, and (b) the toilet paper often disintegrates.

So, this brings me to my latest solution, which I found thanks to all the articles and blogs being written about toilet paper alternatives when none could be found due to the pandemic: a postpartum peribottle. Designed for women to ease soreness after childbirth, this is a soft rubber bottle with a spout with a hooked end, so you can hold it upside down, aim and squirt. It does not eliminate the need for toilet paper, but it certainly cuts down on how much.

I found one for $15 online, and it has a collapsible spout and even a little bag for travel. It takes a little practice, but it is definitely the easiest and cleanest solution I’ve come across so far. And it’s far cheaper than installing a bidet.

Even if you don’t have hand problems, using a peribottle is a mighty convenient way to conserve toilet paper—which, in turn, saves the trees that toilet paper is made from. And saving trees helps to moderate climate change and maintain animal habitats—which matters for a host of reasons, including the mounting evidence that human encroachment on natural habitats contributed to the way that a bat-borne virus morphed into the COVID-19 pandemic. It’s all interconnected, folks.

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: Jasmin Sessler

Sugarplums

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As I write on Monday morning, snow melts off the roof of my home office, tap-tapping on the sill below. The droplets catch the sun, like streaks of liquid gold. Yew boughs glitter and sway in the light breeze.

Still, it’s quite cold outside, with highs today only in the low ’20s. I’m glad for my renewed gym membership, knowing I can walk and ride the bike despite the frigid air. (And, yes, I hit my goal last week of three workouts!)

Memories come in odd flashes. As I was getting dressed, trying to figure out how many layers I needed, I suddenly recalled a particularly cold day in the second grade. Back then, freezing temps would not have stopped our teachers from sending us outside for recess. As long as the sun was shining, we were on the playground, tossing rocks for hop-scotch, twirling jump ropes, climbing the jungle gym, swinging on swings, playing dodge ball.

But on this particularly cold day, a few friends and I were complaining to the recess monitor, a woman with a dark-brown, Jackie-Kennedy-style coif, scarlet lipstick, and a kind disposition, about the fact that we didn’t want to be outside. She was our favorite monitor, possibly one of the moms, though I don’t recall. “You’re just a bunch of sugarplums,” she teased. “It’s a beautiful, sunny day!”

Our seven-year-old response was to link arms and march around, chanting, “It’s cold, it’s freezing, it’s terrible! It’s cold, it’s freezing, it’s terrible!” She laughed, and we did, too. At some point that seemed like forever (probably after a mere 20 minutes), the bell rang and we gratefully retreated to the warmth of our classroom.

I am, still, indeed, hypersensitive to the cold—though not due to any (implied) weakness of strength or character. Remembering that day, I have to smile, but I’m glad that, in our own childish way, we stood up for ourselves. (Back then, girls had to wear skirts and dresses to school, so our legs were pretty darn cold.)

At the same time, our recess monitor made an important point. Focusing on the negative wasn’t going to help us one bit to stay warm. Running around would have been a better idea, soaking up the sun and generating our own heat. Linking arms, our improvised solution, helped, too.

Some 59 years later, those lessons still shimmer in my mind. Focusing on the negative, overwhelming as the challenges may seem, won’t get us anywhere. Standing up for our truths matters. Linking arms helps.

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: Nine Köpfer

Cup of Kindness

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Last week I said farewell to my long-time rheumatologist at Boston Medical Center. Dr. Robert Simms has been my trusted scleroderma expert for 22 years. He’s moving on to semi-retirement in New Hampshire, and I wish him only the best. But I will miss him.

We first met when I participated in a BMC research study on treatments for Raynaud’s. The project was directed by the late Dr. Joseph Korn, who founded BMC’s scleroderma program in 1993. I ended up in the control group, so I did not directly benefit from the study. But I did gain a fledgling relationship with Dr. Simms, who was also involved in the research. Soon, he became my go-to specialist for managing chronic infections in my digital ulcers, and, eventually, my primary rheumatologist.

I also gained some confidence from driving into Boston for my monthly research study check-ins. Up to that point, the idea of an hour’s commute from home seemed like a major undertaking, not to mention the terrible (deservedly so) reputation of Boston drivers and traffic. But after a few trips, I realized I could actually manage it quite well. That aha moment led to my realizing I could commute to Boston for a job, and my eventual dozen-plus-years stint as a marketing and communications director at a small Boston-area college.

I surely have not missed the daily commute for the past decade since I left the college, but I’ve continued to drive into Boston (or take the train, when possible), for a variety of commitments, including my regular, 4-month check-ins with Dr. Simms. Whenever we’d meet, he would always take whatever time I needed to fully discuss any issues, as well as to catch up on life. A leading scleroderma researcher, he gave thoughtful, conservative advice. His referrals to other BMC specialists who also understood this complex disease were consistently excellent. I’ve been blessed to be in very good hands.

I trust that will continue to be the case. He introduced me to his protege, who has been with BMC’s scleroderma program for the past seven years, is deeply immersed in research and care for those of us with this complex disease, and seems equally personable, as well. Relationships, especially with even the best physicians, take time to build mutual trust. I’ve grown older with many of my specialists, baby boomers all. So, I’m that much more grateful that I didn’t have to lift a finger to make a smooth transition with such a key member of my medical team.

As we celebrate the arrival of 2020 at midnight tonight, many around the world will join with friends to sing Auld Lang Syne. The phrase literally means “old long since”—or, for old time’s sake. This New Year’s, I’ll drink a cup of kindness to you, Dr. Simms. Thank you for everything.

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: Ben Wilkins