Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

The Cruelest Month

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April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.

—T.S. Eliot, The Wasteland

My April started early this season, by a few weeks. With warming weather and spring’s promise have come ulcers and more ulcers—an inexplicable but oft observed trend in medical literature.

No one knows why, in spring, ulcers blossom along with lilacs. Maybe it’s the gravitational pull of the moon. My theory is that my skin expands and contracts as the temperature cycles from cold to warm to cold to warm again, causing it to crack like a concrete sidewalk at the end of winter and form more open sores.

Right now, I have nine ulcers on my fingers: four on the left hand, five on the right. To make matters much worse, an unusual ulcer on the knuckle at the base of my left middle finger got infected last week. The infection bloomed into cellulitis. The back of my hand puffed up and was warm to the touch—unusual for me, with my perennially cold hands—and made grasping painful.

My normal antibiotic regime made no dent within 24 hours. Fortunately, I was able to get in to see my rheumatologist on Friday afternoon (never let an infection go over the weekend—much harder to get medical attention without ending up in the ER), who consulted with an infectious disease specialist, who prescribed Rifampin, which is normally used for treating tuberculosis and to prevent the spread of bacterial meningitis, but is also used, in my case, for treating resistant strains of staphylococcus.

This was a new drug for me, but, thank goodness, it worked. I didn’t have to go on IV antibiotics, which I hate, because my veins are small and roll, making it hard and painful to insert the needle. If I have to stay on IV antibiotics for any length of time, I end up either having to be re-stuck about every three infusions, since my veins give out, or getting a PICC line under my right armpit (the left armpit veins are no good anymore, from past IV episodes), an extremely unpleasant procedure.

So now, thanks to the miracle of a more powerful oral antibiotic, my left hand is almost back to normal again, I’m IV free and feeling better.

Except for the aftermath of yet another frightening episode with infections. On Friday, waiting to see if the antibiotic kicked in, I kept monitoring my left hand to be sure the cellulitis hadn’t spread across my wrist and up my forearm. I had a bout of cellulitis several years ago when I could actually watch the redness move in a swath up my arm at a rate of about a half-inch an hour as I was driving home from work on the Mass Pike, racing to get to the infusion lab. I’ve learned since to catch symptoms early.

But even as I am meticulous with hand care and getting appropriate medical attention, an experience like this always reminds me how vulnerable I am—we all are—to sudden, inexplicable illness, flare-ups, accidents. It leaves me feeling shaken and uneasy for several days, until my body begins to heal and I realize that I’m still quite strong and able, despite the way my scleroderma can muster a stealth attack.

We all walk this earth, not knowing what comes next. Chronic disease just adds to the uncertainty—or perhaps, increases the predictability of uncertainty. If anything teaches that control is an illusion, it’s that.

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.

Smelling in the Present Moment

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Our golden retriever, Ginger, may be going on 14, but her sense of smell is still in tact. Whenever we go for a walk, she leads with her snout close to the ground, sniffing every leaf and lamppost, inhaling dank secrets.

Which has me musing: How fascinating that we take in smells with every noseful of air. If we breathe through our mouths, we simply breathe. But through our noses, we get more than just essential oxygen—we get a world of sensation that resonates deep in our psyches. Smell, as any writer knows, is the strongest way to evoke memory. For a dog, olfactory memory is all the more powerful, I suppose.

And musing: How it is that our aging Ginger, who is nearly a centenarian in dog years, can still smell a whole lot better than I can? She has, of course, the canine advantage. But I’m also gradually losing my sense of smell.

Some of this is due to genetics. Both my parents began to lose olfactory acuity as they aged. This almost caused a calamity once, when my dad decided to cook sorbet from scratch and left the pan of boiling sugar on the stove unattended. The pan caught fire, igniting the cabinet above the stove. Fortunately, my parents called the fire department in time and their house didn’t go up in flames.

But some of the problem is due to scleroderma, as well. My nose has narrowed and tightened. In addition, Sjögren’s has significantly dried up my nasal passages. I irrigate my nose and sinuses twice daily with a saline solution, which helps my breathing and limits nosebleeds, a real problem in winter. But I still can’t smell as well as I once could.

Very frustrating. I used to have a really acute sense of smell—to the point that I would tell Al about some odd odor and he’d look at me as if I were crazy. This skill saved us some major kitchen disasters of our own. Years ago, in our first home, I began to notice a sour smell. After some investigation, we discovered that either mice or chipmunks had been storing dog food kibbles in the grid behind our refrigerator. Condensation had leaked over the kibbles, which began to mold. Not pleasant.

A few years ago, a plastic surgeon told me he could widen my nostrils to their original dimensions and “take a little off the top” of my rather prominent Herwitz nose to make it easier to breathe. I gave this some serious thought for a while. But so far, I’ve decided not to go the extreme makeover route. My nose may be big and narrow, but it’s mine, and I’m pretty attached to it.

Just recently, I’ve discovered another, much simpler strategy that appears to improve both my breathing and ability to smell—meditating. If I can settle into that quiet, still, contemplative place in my mind (not easy, but I’m working on it), slow down my breathing and just be present, my nasal passages widen, I can breathe deeper and smell more of the world around me again.

Ginger seems to know this, intuitively. Like all dogs, she lives in the present moment all the time. For me, walking her is a form of meditation itself (provided no other dog passes us in the opposite direction). So, I need to take my cue from her: Slow down, pay attention and smell the roses—or whatever else may line my path.

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.

Cutting Bandages

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Every morning and every night, when I get dressed and before I go to bed, I cut bandages for my ulcers. I divide them lengthwise to layer over my fingertips, then wrap a whole bandage around each finger to secure the half bandages in place. It’s become a ritual, this hand management, a routine essential to avoiding infection, a pit stop for damage control, a meditation.

For the past two weeks, as I traveled in Tel Aviv, Jerusalem and London, this ritual-of-necessity anchored me. No matter where Al and I were staying or who we were with, twice a day I had to stop and take care of my hands.

I cut bandages on my fold-out tray in a British Air Boeing 777 en route to Tel Aviv, on a bed in Al’s cousins’ apartment in Ra’anana before sundown on the Jewish Sabbath, at the kitchen table in our friends’ Tel Aviv pied-à-terre over a 1:00 a.m. heart-to-heart about letting go of your adult children, at an old oak table in our cousins’ London flat after our late night arrival from Israel, wanting only to go to bed and knowing I couldn’t, yet.

I was in the midst of cutting bandages when Mindi came to greet us at our friend’s apartment in Tel Aviv, the morning after we’d first arrived. I hadn’t seen her for nearly six months, since she’d left to make a life for herself in Israel, so I jumped up from the table, fingers half-done, to give her a big hug.

And I was cutting bandages last night, sitting on our own bed once again, relieved to have peeled off the day’s grubby dressings, blackened by twelve hours of travel. Were we really at the Tate Museum in London that morning?

Sometimes, the bandaging ritual during our journey was a damn nuisance, the last thing I felt like doing before leaving the house for the day’s adventures or when all I wanted to do was go to bed.

But at other times, it was peaceful, a time to collect my thoughts when everyone else was either asleep or away, an island of quiet to sort out what I’d seen and done and learned that day. As I’d cut the bandages, I’d listen to the familiar sounds of an unfamiliar setting—a wall clock’s tick, a dog’s bark, the click of heels on the floor above, the subterranean rumble of nearby Tube trains—and feel grounded.

I needed that stillness. Travel is so packed with newness, the unpredictable, the need to process so much information quickly and make snap decisions based on estimates of how your experience of your own world approximates this one, even though the two may be only tangentially related. Much as you’re constantly on the go, to fully appreciate the experience, it’s essential to slow down and just be.

So, I guess I have my bandages to thank for that.

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.

Good Medicine

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Half-way around the world from home, I’m writing at our friends’ kitchen table in their Tel Aviv apartment, watching a lemon sway from the branch of a tree on the neighbor’s patio, listening to the swish and blare of traffic, the wall clock’s soft tick, a distant outdoor chime of Rock-a-Bye Baby, a jackhammer’s clatter.

Al and I have traveled nearly 5,500 miles to get here, partly for business, partly to see his family, and mostly to visit Mindi, our eldest, who has been living and working in Israel for almost six months.

It has taken the past four days for my body to adjust. The trip was, by most travel standards, easy—our flights were on time, our connection a 20-minute walk through cavernous Heathrow. We had minimal turbulence, ample food, excellent service, and our bags arrived with us. But for me, it has been very strenuous.

I haven’t traveled abroad in 16 years. Then it was challenging because the girls were young. Now it’s challenging because I’m getting older, my hands are more damaged, and I don’t sleep as well, even under the best of conditions.

I was prepared, but not. I packed well-organized carry-ons but didn’t realize that I had to pull out my laptop for security checks in Boston and London, which required unzipping and unpacking and repacking and re-zipping twice. I knew we’d have in-flight meal service but didn’t anticipate all of the myriad shrink-wrapped and hermetically sealed food items and utensils that I couldn’t open without Al’s help. I wore soft sweat pants and brought slippers for the plane but realized as we squeezed into our seats on both flights that comfort and coach don’t belong in the same sentence.

All of this took a toll on my body, especially my hands. So many barriers, from the seat belt clips that I had to pry open to the lavatory door’s narrow pull grip. With a current count of eight ulcers, I knew I needed to change all of my bandages at some point along the way or my skin would deteriorate, but I also knew I needed to be meticulous about keeping the wounds clean in the process.

I solved the problem somewhere high over the Mediterranean, using disposable aloe hand wipes to clean my fingers before replacing all the dressings. One of the flight attendants, noticing the mounting pile of bandage wrappers on my tray table, asked if I needed any help. No, I said, I do this all the time (just not at 30-thousand feet).

Sleep was elusive. I avoided everyone’s advice to take sleeping pills because I didn’t want to get groggy and dehydrated. So I dozed as much as I could and caught up over the next few days.

Yes, it was a major challenge. But so worth it.

There is no better medicine in the world than seeing your daughter all grown up, finding her way in a complex foreign culture, thriving. And there’s no better feeling than knowing, despite chronic medical challenges, you can still fly halfway around the globe to see her new world through her eyes. And you’d do it again, in a heartbeat.

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.

Monday Night Pilates

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We’re lying on our backs, the four of us, each on a black padded platform carriage called a reformer, our legs extended at 45 degrees, our heads and shoulders curved forward, straight arms pumping alongside our torsos, hands in straps that pull against a combination of springs and our own body weight, doing The Hundred.

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Welcome to Monday night Pilates. Our instructor calls out the count. We pump and breathe in unison, shew-shew-shew-shew-shew, trying to keep our backs imprinted flat against the platform, trying to move our arms without moving the carriage, trying to suck in our guts and keep our legs up and not strain our necks.

I’ve been taking Stott Pilates for about four years now, ever since I decided I was losing range of motion and hunching my shoulders so much to keep warm that I was beginning to look like a little old lady. I’ve worked my way up from introductory mat classes to the reformer, which looks a bit like a medieval torture contraption. But I actually like the workout—especially once our hour is done.

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My classmates range from forties to seventies, all moderately fit, and we enjoy kvetching and an easy camaraderie as we sweat and strain. Our instructor, a former Air Force Academy gymnast and competitive ice skater, is just the right combination of tough, precise and caring. She pushes us to the point of exhaustion, but also offers me creative modifications for any move that my joints won’t allow me to do.

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Halfway. Around this point my head feels like it weighs a ton and I struggle to keep it raised. But I keep pumping. And wondering, why am I doing this to myself? I used to hate gym.

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But the workout is essential. If I miss a week, I feel it the next. And if I miss two weeks, I start feeling crummy. Keeping my joints moving and my muscles strong and my posture aligned make a huge difference in my ability to get through the day, sleep well at night and stay positive about my health and whatever other stress I’m managing.

Plus, it makes me feel mighty. I never exercised seriously growing up. Here I am, 57 years old, with all sorts of crazy ailments, and I can kick butt. Sort of.

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I stare at my thighs and wonder why, with all this exercise, I can’t get rid of the cellulite. Pump-pump-pump-pump-pump. My neck feels like it’s going to snap. Our instructor always says we can put our heads down if we need to, but I don’t want to cave.

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Almost there. Keep going. Sometimes she forgets the count and skips a set of ten. No such luck tonight.

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We bend our legs to a table-top position and squeeze our bodies like a fist, then, relief, roll our heads down and lower our feet to the platform.

I adjust the platform tension and check the clock on the wall. Half-an-hour to go. Next, front rowing, bicep curls, tricep presses, I’m getting stronger, my muscles are shaking, shew-shew-shew-shew-shew.

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.