Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sjogren's syndrome

Tender Is the Grass

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Is it possible? Has spring finally arrived? After this bitter cold, seemingly endless winter, it’s hard to trust. But the signs are visible.

Sunday. Sunny, 55 degrees. The Red Sox opened at Fenway on Friday (Never mind that the Brewers swept the three-game weekend series—we’re just getting started, and Ortiz is still wearing a Boston uniform.)

Crocus_4-6-14As I walked Ginger round the block Sunday afternoon, I noticed tender green grass shoots peeping through thatch. Purple and fuchsia crocuses yawned on the sunny side of the street. Even in our shaded back yard, one lavender bud had valiantly pushed its way toward light.

At last. It’s the second week of April, and the forsythias are not yet aglow. But the sun is brighter, the sky, bluer, and only about a foot remains of the last, stubborn, dirty pile of snow out back.

It’s the season of promise and not-quite-there-yet.

Neighbors walk by in jackets and sunglasses. Around the corner, kids’ bikes litter a front lawn. On my route with Ginger, I reluctantly wear my mid-weight winter coat, insulated gloves and wool hat. It may be well above freezing, but 55 is still chilly for me and my Raynaud’s. My finger ulcers are finicky in the spring and need protection and mindful nursing. It will have to get into the mid-60’s before I can switch to a shorter wool coat, high 60’s or even low 70’s before I can send my winter sweaters to the dry cleaner and go without gloves.

I’m also still tending my light-sensitive eyes in the wake of complications from conjunctivitis. The infection of two weeks ago has cleared, but an allergic reaction to the eye drops left me with mild corneal abrasions in both eyes that required more medication. I can now look at my computer screen without discomfort, but reading and sunlight remain tiring. It is just never simple with scleroderma and, in my case, the added complication of Sjogren’s, which renders my eyes, nose and mouth too dry to begin with.

I’ve been extremely frustrated about this over the past week. Writing and reading are such a huge part of my work and daily pleasures that my struggles with vision have been both aggravating and frightening. Why did something as mundane as conjunctivitis have to turn into such an ordeal? What if my vision doesn’t return to normal? How long will this last? Do I always have to get an infection of one sort or another when I travel?

For all these reasons, Sunday’s promise was most appreciated. Those bright green sprigs of grass, the joyful crocus blooms, the barely visible buds on tree branches—just knowing that baseball bats are smacking over home plate once again, whoever wins—all remind me that winter really does end, even in New England.

I will retire my down coats and wool sweaters and don rayon and cotton once again. The days will continue to get warmer, on average, and longer. Leaves will unfurl and shade the street. My eyes will fully heal.

And, if we’re really lucky, the Sox will bring home another World Series championship this season. Welcome back, spring.

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

Outtakes

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One of the strangest aspects of my scleroderma is calcinosis—a condition that causes small bits of calcium to form under my skin and eventually work their way out. From time to time, a calcium pit will push through, leaving a small hole, like a tiny window into my finger, that fills with new skin in a day or two.

Sometimes the piece is sharp and painful as it migrates to the surface, and other times, it’s just a nuisance, a condition I’ve long learned to recognize and manage with careful hygiene to be sure an infection doesn’t settle into the resulting ulcer. The calcium tends to form at pressure points, in whichever fingertip surface I use the most often.

Over the past decade, calcinosis has also begun to occur in the bridge of my nose, where my glasses rest. I can’t wear contacts, because my eyes are too dry from Sjögren’s, another scleroderma complication. I’ve switched to very lightweight Silhouette frames, which are expensive but create barely any pressure. Still, the calcium forms. These pits need to be removed surgically, or I risk ulceration in this very delicate skin that is stretched too thin by scleroderma to heal properly. Not fun.

So it was, last Monday, that I headed in to Boston Medical Center to visit my ENT plastic surgeon, for a consultation about removing yet another calcium pit from my nose. I hadn’t seen him since 2009, when he skillfully extricated the last offender from the inside, instead of having to cut through from the outside. The time before that, I’d seen another surgeon who struggled with my fragile skin when closing the external wound.

He knew me right away—I guess my nose is pretty memorable—and made a quick assessment. The pit was very close to the surface and actually sticking to the underside of my skin. He could remove it from the outside or the inside. It would only take 15 minutes. In fact, he could do it right then. His associate also took a look and concurred. Easy enough to do. How did I want to proceed?

Now, I have never, ever, made a decision to do any kind of outpatient procedure on the spot. Especially on my face. Especially without Al along for moral support and to help me get home in case I got woozy afterwards. But as I sat there, debating and discussing pros and cons with the two specialists, I made up my mind.

It didn’t make sense to extricate the calcium pit from inside my nostril, a much more uncomfortable procedure, since it was stuck and could tear the outer skin in the process. If he cut from the outside, I’d just have a couple of stitches. And if I did it right then, I’d save time.

Yup, that was the bottom line. I really didn’t want to have to come back another day, get psyched up for the procedure, and spend yet a second morning or afternoon dealing with this. Plus, it could be weeks before I’d get into their schedule again, and the pit was stretching my skin so much it could possibly break through and not heal properly in the meantime. So, I said let’s do it.

Four shots of local anaesthetic—like sitting still for a bee sting, was his sympathetic assessment as I winced and grit my teeth—a slice, some grinding against bone and tugging on the stubborn remains of the calcium, a couple of stitches, and he was done in 15 minutes. The removed deposits, which he showed me floating in a little orange bottle that would be submitted to the lab for assessment, were like grains of sand, just like the ones that come out of my fingers. At least I’m consistent.

I felt a bit shaky as I left, but victorious. It was done. And almost routine. Has it really come to this? Even the oddest experiences with this disease are now just a matter of course? Sure, why not cut into my nose while we both have the time and take out the damn piece of calcium. Might as well be practical and just get it over with.

My nose is still healing, but it only hurt for a day. The stitches continue to absorb and will come out on their own. The worst thing that happened afterwards was getting a rotten cold, probably from the ENT waiting room, that knocked me out for the second half of the week. Two calcium pits popped out of my fingers, perhaps out of sympathy for their compatriot. Otherwise, it’s been just another week.

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.