Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

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

Best Laid Plans

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A week ago Monday, I was on my way home from a two-day philanthropy board meeting in New Jersey, and I had a plan. My German language class meets in Boston on Monday nights, and I didn’t want to miss it, so I had booked roundtrip flights (plus carbon offsets) from Boston to Newark far enough in advance to get a good price (usually, when we meet, I drive to New Haven and take the train). My afternoon flight back to Boston was due in around 3:30, giving me plenty of time to retrieve my car from long-term parking, drive into the city and park, then get some dinner and be at class for 6:15.

As I said, I had a plan. Air traffic in Boston, however, was in no mood to cooperate. Despite good weather, our flight was delayed in Newark by about an hour due to a busy day at Logan. Still, I figured when we landed after 4:00, I had plenty of time to get dinner. The van to the parking lot arrived right away . . . but as soon as we left the airport, we got stuck in traffic. Why? Because the Chelsea drawbridge was open. Maybe twenty minutes passed until we finally got up to the bridge and . . . the gates went down and the bridge began to rise again because another ship was sailing through. Our driver turned around and drove the back route to the lot, earning a round of applause from all of us passengers. Still, this jaunt had now taken as long as my flight.

I got to my car, it turned on (thankfully), and I started to navigate my way into Boston in what was now high rush hour traffic, but WAZE was not really clear on where to turn, so it took a bit of intuition to find my way downtown. By now it was about 5:45, still enough time to park, grab some takeout, and get to class.

However . . . when I finally reached the garage where I’d reserved a space, the entrance was blocked (are you kidding me?) due to construction. A sign said to take three left turns to get to the alternate entrance, but I was pretty frazzled and hungry at this point, it was drizzling and getting dark, one way streets in Boston can be confusing, and I couldn’t find the other entrance, so I ended up parking on the street.

Usually, street parking in Boston uses an app. Not this space. It required putting a credit card in a meter. I tried dipping my card three times, with my fingers getting numb from the cold, but couldn’t grasp the card and retrieve it fast enough. Aargh!!! I stopped a trustworthy-looking young man who was walking by and asked if he could help, which he did, and I was able to pay.

Now it was after 6:00. And I was disoriented. How do I get to class from here? Trying to figure it out from Google Maps took a few false starts, but ultimately, I found the building, got through the reception desk security and up the elevator to our meeting place at WeWorks, which is shared office space. Our class meets in one of the conference rooms, but you need a key to get in (which our instructor has). And, as I scanned the lounge, no classmates were to be found, which meant they’d already gone to the room.

As I was looking to see if I’d missed someone, I took a step . . . and tripped over a stuffed ottoman near a couch. Wham! I landed on hands and especially on my right knee. It hurt. A lot. A fellow sitting nearby asked if I was okay (“No!” I cried) and helped me up. I could still walk, fortunately, and a woman who was cleaning the kitchen area let me into the locked section of the office space. She also, at my request, kindly filled a bag of ice, which I used to reduce swelling in my knee for the next couple of hours.

No way I was going to skip class after overcoming all those obstacles! But I did leave an hour early, because I was quite hungry, tired, and still had an hour’s drive home. Al met me with a big hug and bowl of warm soup, which was exactly what I needed.

A week later, my right knee remains a bit black-and-blue and is not quite back to normal. If I continue having issues later this week, I’ll go for an X-ray to be sure I didn’t do anything other than sprain it. The rest of my fall-related aches and pains have resolved. Most importantly, I did not hurt my hands. This is the real miracle of the whole episode.

The older I get, the more the idea of falling scares me. If I can find any silver lining in this escapade, it’s the fact that my hands are unharmed, and I don’t seem to have broken anything. I didn’t give up and still attended most of the class. It was an important reminder to be mindful of where I’m stepping. And my husband gives the best hugs in the world.

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: Alexander Schimmeck

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.

Image: Pineapple Supply Co.

Mediterranean Musings

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No doubt about it. The weather here in New England is getting colder. My blue fingers bear witness to fall, even as the trees are only just turning.

Sigh. I keep thinking of our wonderful vacation this summer in Greece, and especially our days on Crete. Hot and sunny days, jumping waves in the ocean—and some of the best food I have ever eaten. Well, I can’t fly back to Crete anytime soon, much as I would like, but I can replicate the flavors of that stunning island.

So, for Rosh Hashanah last week, I used a cookbook of Crete cuisine for our holiday meal. Among the dishes were homemade stuffed grape leaves, something I never would have thought of making before. Fortunately, our younger daughter was home for the weekend, and her very nimble fingers came in quite handy for rolling several dozen of the appetizers.

The recipe is actually quite simple. The filling is a combination of rice, lemon juice, olive oil, mint, dill, and onion; you can buy grape leaves by the jar and save the step of prepping them. Lots of recipes out there. The one we followed needed some adjustment in proportions and used uncooked rice (which cooks after the leaves are stuffed), but I’ve seen other recipes that use cooked or partially-cooked rice. Once you make the filling, you wrap a spoonful in each grape leaf, kind of like a mini-burrito. Then they all go in the bottom of a large pot, covered with water and a plate to keep them from floating. Twenty minutes later, they’re done. And delicious, much softer, more subtly flavored than the store-bought kind.

I was actually able to wrap one myself, despite wearing annoying latex gloves (an essential so I don’t infect my fingers while cooking), with floppy fingers that are longer than my partially amputated tips. But I’m going to try it again on my own sometime, because I want to see if I can really do it, and they make a great lunch. I still have a few left from last week, and they keep well in the fridge.

Best of all, when I eat stuffed grape leaves (with kalamata olives, of course, a perennial favorite of mine), I can better remember the blue Mediterranean skies and warm waves, the pleasure of a hot-but-not-too-hot day, our wonderful B&B hosts, and the joy of savoring every moment. That’s the best antidote to fall’s onset that I can think of.

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.