Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

calcinosis

The New World Order

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It’s Monday afternoon, and I’m watching huge, fluffy snowflakes fluttering to earth outside my window. They land gently, without a sound, the perfect antidote to the frightening headlines on my news apps and comments in my Twitter feed.

I should stop reading it all, I know. But I feel compelled to keep up with the latest COVID-19 developments. It’s like we’re all trapped in this horror movie, but we can’t close our eyes. We need to know how it ends. And we can’t leave the theatre.

I find solace in meditation, my writing, helping my clients to communicate their efforts in response to the pandemic, connecting with family and friends, studying for my German classes (now online), watching videos of people in Italy making music from their balconies.

And I’m finding workarounds to being mostly home bound. Last Friday, instead of driving into Boston for a long-awaited first appointment with my new rheumatologist at Boston Medical Center, I made an arrangement with him via MyChart messages to speak by phone. The Rheumatology Department is in process of switching over to telemedicine, but not there quite yet.

He was very generous with his time. We spoke for 40 minutes about a wide range of my concerns, not only my health status, but also about social distancing and risks of the virus for other family members. As for me, he said my age is a greater risk factor than my scleroderma. This varies, of course, for each individual, but in my case, my lung involvement has remained a lesser issue, thank goodness.

Earlier last week, my hand surgeon’s office checked in about my upcoming procedure to remove a bothersome calcium deposit from my right thumb. We agreed to postpone until June, earliest. I’ve been living with this annoyance for at least a year. No point in doing it now, even in an outpatient surgical center, as planned.

Sleep does not always come easily. It seems that I get a good night’s rest every other night. It’s hard to turn off the worries about what the future holds. But at least I’m not driving anywhere long distance right now, which is riskier when I’m fatigued.

Instead, I’m trying to walk outside as often as I can. Over the weekend, I took a long walk to our city’s oldest park, to clear my mind and get some exercise. It was crisp and sunny. On any normal weekend afternoon, with such good weather, the park’s playground would have been crowded with kids and parents. Instead, only one couple with a small child played briefly on a swinging saucer. Traffic was light. A handful of people walked or jogged around the park’s narrow pond, some alone, some in pairs. We passed each other with a smiled greeting and six feet of separation.

As I rested on a bench, a squirrel bounded across the grass. In all the years I’ve been observing squirrels, I don’t think I ever noticed that they jump instead of walk from place to place. Instead of being wrapped up in my head, I had slowed down my mind enough to simply pay attention. A good thing.

A guided meditation I was listening to this morning noted how important it is to see and acknowledge all the little things in life that are going right, right in front of us. It is so easy to get sucked into the terrifying vortex of COVID-19, the news of exponentially mounting cases, the sudden deaths of loved ones, the exasperating muddle of federal leadership. While it’s essential to be alert and informed by reliable sources, too much information doesn’t help me cope.

So right now, I’m just going to watch the snow fall.

Be well.

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.

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

Progress Report

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A year ago today, I was two weeks away from my second hand surgery to repair damage from severe ulcers in five fingers—damage that had exposed bone and broken two of my knuckles. My left index and right pinky were held together by steel pins, and I didn’t know if I would lose them in the next procedure. My hand surgeon felt that skin grafts were worth trying, but we didn’t know if they would heal properly. He had warned me at the outset that these were the first of many surgeries.

What a difference a year makes! I’ve been extremely fortunate. A gifted surgeon, excellent wound care and 60 dives in a hyperbaric oxygen chamber, plus effective occupational therapy sessions (and health insurance to cover it all), combined with a lot of support from family and friends enabled me to heal.

And I am cooking again. Al had picked up the slack in the kitchen for well over a year, ever since the ulcers became too painful for me to handle any utensils. He cooked up some great meals and discovered that he really enjoyed experimenting with new recipes. I was grateful for all that good and healthy food.

But a part of me missed cooking. It’s never been a major focus in my life. I don’t spend hours pouring over cookbooks and savoring the thought of new recipes. However, I do like making a good meal, especially for the holidays. It’s exhausting, but satisfying to turn out a gourmet, multi-course dinner. It gives me pleasure to prepare food that brings others enjoyment.

At some point over the summer, I began baking bread again for our Friday night Shabbat dinners. Al had gotten quite good at this, and he was deservedly proud of his delicious braided loaves, but he was happy to have me pick it up again. I also was able to help clean up after meals, which had been impossible with the ulcers and ensuing surgery.

The Jewish New Year, Rosh Hashanah, arrived just a few days after we came home from Europe last month. I knew it would be too much to have a big crowd, so we just invited a few close family members for the first night. But, to my and Al’s surprise, I was able to do most of the cooking myself. He served as sous chef, cutting vegetables. Even still, I was able to handle the chef’s knife and do a lot of prep myself. Everyone enjoyed the meal, and I felt like I had crossed the finish line.

I have been doing most of the cooking ever since, although I still have to be careful. I developed an ulcer in one of my skin grafts shortly after we returned from our trip, but I think this was actually caused by some calcinosis lurking just under the surface. It is gradually healing. Al is enjoying a well-earned reprieve, although I recruit him for help as needed.

Mostly, I’m amazed and extremely grateful that I can actually do so much with my hands again. It’s taken all this time to relearn how to use them, and I certainly have my limits. But it’s wonderful to see that, despite all the challenges, my body can truly heal.

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.

Extraction

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I spared myself a visit to my hand surgeon last Friday. Don’t get me wrong. He’s a great physician. But the presenting problem resolved itself, so to speak.

The presenting problem was a piece of calcium the color of volcanic ash that has been emerging from the pad of my right thumb for nearly a year. It almost surfaced back in the winter, then receded for several months before pushing closer and closer to the top layer of skin. Finally, a few weeks ago, my thumb  erupted.

But all I could see was the tip of the iceberg (mixing metaphors, here—for some reason, the calcium deposits that my scleroderma manufactures have changed in color from white to dark gray in recent years—no idea why). Slowly, it revealed more of itself, but not enough so that I could pull it out easily.

So I resorted to trying to gradually soak it out of my thumb, using peroxide morning and evening, plus antibiotic ointment with gauze and fabric bandages to protect it during the day and overnight. This seemed not to accomplish much, other than protect me from infections. I finally decided to make an appointment with my hand surgeon to see if he could extract it in the office. I was hoping that would help the pit to make up its mind to come out on its own.

Still, it needed more coaxing. This required the proper tools. I turned to my father’s old dissecting kit. Made of black fabric, lined with purple felt, it contains everything you need for high school biology to dissect a frog, including a pair of very fine needle-nosed tweezers. I have some unkind memories of those tweezers—my dad used them to pull splinters out of my fingers when I was a kid, a procedure that never failed to make me squirm and scream.

However, they are the best tweezers for pulling calcium pits out of my fingers (especially since I’m the one doing the operation). Every morning and night last week, leading up to the scheduled Friday appointment, I wiped the tweezers with an alcohol pad, daubed peroxide on my thumb, and proceeded to try to loosen up the calcium pit from surrounding skin.

Finally, on Thursday morning, I got lucky. The calcium pit gave up and I plucked it out—a quarter inch long and eighth of an inch in diameter. The biggest pit I have ever extracted. Lots of blood, but pressure stanched the flow. I filled the hole in my thumb with antibiotic ointment and covered it up. Then I cancelled my appointment.

A few days later, the skin has nearly filled in. As strange as this disease gets, it’s always a relief to see that my body can heal itself, too.

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 Credit: Jack Ebnet

Tin Man

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Two-and-a-half years have passed since I last had calcium removed from the bridge of my nose, an unhappy complication of my particular variant of scleroderma. So it was that I found myself Monday morning in the exam room of my ENT plastic surgeon, once again assessing what looked like a gray clump just below the skin.

According to my medical records, this is the sixth time I’ve had the procedure over the past 15 years or so (fifth time by this specialist). So I was pretty sure of what to expect.

Except my disease had decided to play a little trick. Instead of the calcium being content to attach to my septum, it had sprinkled itself into the skin, as well. This meant that he would have to remove an ovoid-shaped centimeter of skin above the clump, to excise all the calcium sprinkles as well as the main culprit.

“You’ll have a scar,” he said. I replied that I didn’t care. No worse looking than a gray bulge on my nose, and certainly easier to cover with a little foundation.

The main issue for me was to avoid lidocaine with epinephrine, the local they gave me last time that caused heart palpitations, back pain and a total sense of being out of whack for about 24 hours. He prefers it because it reduces blood flow to the excision, but I’ve had this procedure done enough times before that combo was popular, and I knew it could be done.

The team—a resident, a fellow and my doc—conceded to my request, and we went ahead. Five shots of lidocaine later, the bridge of my nose was numb. I could not feel the scalpel. But as has always been the case, I could certainly feel the grinding of the surgical tools as he scraped away the calcium. Some of the tiny pieces flipped out, one onto the corner of my closed eye, another on my neck. Within about five minutes, he’d removed it all.

Seven sutures and the incision was closed (although, as he was stitching me up, he wondered aloud if the sutures would actually pull the skin all the way back together—which, he added, was not a problem, as a bandage covering the incision would enable it to heal, but this was rather disturbing, as I imagined exposed bone on the bridge of my nose—then he remarked that it was closing up just fine—good grief).

Then came the surgical strips. First some (I believe) antibiotic ointment and one strip. Then some kind of liquid glue that smelled a bit too much like Duco Cement, then more layers of the strips. When they were done, my nose looked like the Tin Man’s from the Wizard of Oz. A little of the glue dripped into the corner of my right eye and burned like crazy.

“I said to keep your eyes closed,” he chided. Thanks a lot. Fortunately, the resident was more helpful with some sterile saline eye drops.

He was also kind enough to give me a prescription for a few Vicodin, after the specialist left the room. (The latter considered pain meds unnecessary and assured me that Tylenol and Ibuprofin would be ample, but I’ve been through this enough times to know that the first 24 hours can be quite unpredictable for pain.)

Al had accompanied me to the appointment, thank goodness, because there was no way I could drive home with a burning eye. It took dozing in the car for an hour plus a two hour nap at home to ease the inflamation. So far, as I write on Monday afternoon, I’ve been able to avoid the Vicodin, but it’s good to know I have it available for sleeping, if necessary. I also took the precaution of consulting with my infectious disease specialist ahead of time regarding taking an antibiotic prior to the procedure and for the next seven days, because I am so prone to infection.

So, now, it’s all about healing. I have to keep the steri-strips on for the better part of the week, unless they fall off by themselves. One is taped to pull up the tip of my nose a tad, to relieve stress on the incision. Eating and drinking feel a bit weird, as a result. I have to be extra careful if I have to blow my nose. But I can sit at my desk and do a little writing. The weather is quite warm, which is best for my circulation. And it’s done . . . at least for another couple of years.

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 Credit: The Tin Man. Poster for Fred R. Hamlin’s musical extravaganza, The Wizard of Oz. Poster print, lithograph, color, 105 × 70 cm. Created by “The U.S. Lithograph Co., Russell-Morgan Print, Cincinnati & New York.” Library of Congress, Prints and Photographs Division. Courtesy of Wiki Commons.