Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Wash Your Hands

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Every day brings more scary headlines about the coronavirus. Along with all the other bad news screaming for our attention every day, it sometimes feels like we’re all on the Titanic, heading inexorably toward that fateful iceberg.

But here’s the good news: One of the best ways to avoid getting COVID-19 is also the most simple and easily accessible: washing your hands after coming in contact with public spaces. Think about ATMs, touch screens at check-out counters, doorknobs, subway hand-straps, gas pumps—you get the idea.

I’m aware of this all the time because I have to be so careful about picking up an infection in one of my digital ulcers. While hand washing is the best option (20 seconds, about as long as it takes to sing “Happy Birthday” twice), I rely on hand sanitizer because I can’t get my bandages wet, and the sanitizer dries quickly. Use sanitizer that’s at least 60 percent alcohol and rub until it’s gone.

Likewise, the best way to avoid spreading the coronavirus—or any other contagious illness—is to practice good hand hygiene out of respect for others. That, and staying home when you’re sick.

Hand washing has been a cultural and religious ritual for millennia. But only since the mid-19th century has good hand hygiene been linked to better health in Western civilization. A Hungarian doctor, Ignaz Semmelweis, is credited with first discovering the connection in 1846 when he noticed that women giving birth in the doctor/student-run maternity ward at Vienna General Hospital had a much higher mortality rate than those in the adjacent midwife-run maternity ward.

Semmelweis determined that the doctors and medical students typically made rounds in the maternity ward right after doing autopsies. Midwives, of course, did not perform autopsies. So he figured that some kind of “cadaverous particles” were being transmitted to the pregnant women. His solution was to require all doctors and medical students to wash their hands with chlorine before treating his patients in the maternity ward—and the mortality rate dropped significantly.

Less than a decade later, Florence Nightingale championed hand washing in an Italian hospital during the Crimean War and also successfully reduced the rate of infections.

While Semmelweis and Nightingale were primarily fighting the spread of bacterial infections, hand washing works for preventing the spread of viruses, too. We’re all touching our faces more than we realize. COVID-19 spreads through droplets of fluid, from face to hand to surface to hand to face. All the more reason to wash or sanitize hands after being out in public.

It will be weeks and months before we fully understand the nature and true risks of this new disease. The number of people infected is certain to increase, both because of the exponential transmission rate and the fact that more people are being tested and detected. There is real reason for concern and vigilance. We need accurate facts, reliable reporting, and scientific leadership, not conspiracy theories and blame games.

In another time of high public anxiety, during the Great Depression in 1933, newly-elected President Franklin Delano Roosevelt reassured the nation with these famous words: “[L]et me assert my firm belief that the only thing we have to fear is fear itself—nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

Those are words worth remembering and repeating right now. That, and go wash your hands.

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: Daniel Levis Pelusi

Chain of Command

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For about a year, now, I’ve had a pit of calcium sticking out of the pad of my right thumb. It looks like a very small, gray pebble, but it will not budge. If I press on it or accidentally bang it, it smarts. It’s also an open wound that I have to tend very carefully to avoid infection.

Usually, when a bit of calcinosis finds its way to the surface of one of my fingers, I can either pull it out or it will pop out on its own. Not this one. Recently, when I tried twisting it with a pair of tweezers, the top broke off, but there remained a needle-like protrusion that is just as stubborn.

So, I finally gave up and saw my hand surgeon last Friday. One look under the fluoroscope, and we had the answer. That pit is the tip of a chain of calcinosis that stretches all the way down my thumb. I’ve known for years that I have a veritable Milky Way of calcium pits floating in both thumbs and other fingers, but never seen anything quite like this.

We discussed options and agreed that he would debride it in an outpatient surgical center. It would be foolhardy to try to clean out all the calcinosis, because (a) it will probably grow back and (b) the risks to my thumb’s ability to function are far too high, especially in my dominant hand. So he’ll just remove a bit at the top of the chain, so I can use my thumb with less pain. We also agreed he’d put me out rather than use local anaesthesia. Too much digging around in my thumb would make me too anxious.

He ribbed me that I always bring him difficult challenges, and I teased him back that I didn’t want him to get bored. This is the same surgeon who saved my hands two-and-a-half years ago from horrific ulcers that lifted up to reveal bone and two broken knuckles, so I trust him completely. Back then we built a great rapport and mutual respect. He told me I should teach a course on wound care.

Now I await word about a date for the procedure, as well as confirmation that the surgical center he recommended is in-network for my Medex BC/BS plan. There’s a back-up, if that doesn’t work out. Always essential to check, first.

So, once again, my hands are in good hands. I wish I didn’t need to see my surgeon, but I’m very grateful that he’s there.

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: Sonny Ravesteijn

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

Trousers Rolled

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My grandmother, who was a stylish woman into her 90s, did not like growing old. “These aren’t the golden years,” she’d say. “They’re copper.”

Now that I’m 65, I have a lot more empathy for her sentiments. I don’t feel old, and I don’t think she ever did, either. But our bodies have a way of refuting that belief. All the more so with a disease like scleroderma.

I was in my late twenties when I first began to experience mysterious symptoms of arthralgia and swollen fingers, plus Raynaud’s and fatigue. When I was diagnosed in my early thirties, I quickly realized that what should have been a decade of coming into my own was, instead, a time of aging prematurely. My friends all had kids, already. Everyone else was full of energy and plans for the future. By contrast, Al and I were struggling with infertility, and I was always cold, achey, tired, stiff, losing the use of my hands, watching my face become more narrow and tight, and constantly experiencing strange symptoms, like painful breathing that turned out to be a bout of pleurisy.

It was hard to share with anyone but Al. I didn’t like going to the local scleroderma support group, because the vibe was all about how bad everyone felt. My doctors were supportive and knowledgeable, and physician friends provided some comfort. But, basically, I just kept my feelings to myself.

As my health began to improve (due to Penicillamine, which has since been discredited in the medical literature as a treatment for scleroderma, due to small research sample sizes, but which I believe saved my life), and our two wonderful daughters arrived—one by adoption and the other, by birth—I regained some dexterity and most of my energy. I went on to have a very full and active life. Thankfully, I still do.

But I also was always aware that my body was still aging faster than most of my peers’. Now that we’re all in our ’60s and early ’70s, however, that comparative trajectory has evened out. Our bodies fail, one way or another, at some point or another. All those years of dealing with limitations have given me one strange advantage—I’ve been managing with less for so long, that the inevitable losses of dexterity, mobility, and energy, as well as accompanying discomforts, just aren’t that upsetting. They’re simply familiar.

Not that I would wish scleroderma or any other long-term chronic illness on anyone at a young age—or any age, for that matter. But learning to cope with physical limits over decades has certainly made this transition somewhat easier. Or, perhaps, more silver than copper.

P.S. If you’re wondering about the title for this post, it’s drawn from The Love Song of J. Alfred Prufrock, by T.S.Eliot, a poem that takes on new depth for me with each passing year.

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.

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Best Stress Antidote

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With all the turmoil in our nation and the world, I’ve been feeling a bit overwhelmed this past week. So it’s worth the time to pause and just take stock of what is going well. Even living with scleroderma, I actually feel relatively healthy and have a lot to be grateful for:

  • Since I had my hand surgery two years ago this fall, I have had minimal digital ulcers. Most of the time, I just have bandages on both thumbs, due to all the calcium deposits in each. But that’s it. Pretty amazing after so many years of multiple ulcers. My hand surgeon essentially removed all the tissue that had the worst circulation. Even if my hands look odd, what’s left is pretty healthy.
  • Despite all the hassles of switching to Medicare, especially Part D drug co-pays, a significant portion of my health expenses are still covered—and I have a good, affordable Medex Plan that includes my long-time team of doctors.
  • Although my lead rheumatologist recently told me he is retiring this February, he has been mentoring a replacement. It will be an adjustment, but I won’t have to go searching for someone knowledgeable or have to worry about a long wait for getting into a new practice.
  • We have the resources to pay for complications like my tooth extraction and implant, as well as for routine medical care.
  • I have energy and strength to lead an active life, run my own consulting practice, take hikes, participate in exercise classes, and keep up my daily routine.
  • I live in a time and place where there are excellent medical professionals who understand this complicated disease, who take me seriously, and who give me good advice that I can trust.
  • Because I work for myself, I can set my own schedule. On days when I’m more tired, I can cut back. On days when I have more energy, I can do more projects. It evens out over the long run, and I always hit my deadlines.
  • It’s fall. The days are getting shorter and colder. But my house is warm, and my husband never complains about setting the thermostat for my needs.
  • Even as my dexterity is limited, I can still cook a gourmet meal for company, weave beautiful textiles, sew a garment, draw, write.
  • I have the loving support of my daughters, other family, and friends. Most especially, I have Al, who has never babied me with this disease, but always given me the care and encouragement that I’ve needed, when I’ve needed it.

Okay, now I feel better. Those are my top ten. How about yours?

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: Ricardo Gomez