Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Skin Deep

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There are some bizarre advantages to having scleroderma. For one, I don’t have as much body hair as I used to, so it take much less effort to shave my legs, and I hardly ever need to shave under my arms, which makes summertime grooming a snap.

For another, although my facial skin has loosened with excellent medical care and time, thank God (within the first five years of my disease, my face became so tight that I was having some difficulty blinking my eyes), I still have relatively few wrinkle lines. Whereas some women pay hundreds of dollars for collagen creams that plump up their skin, I have more than enough collagen to go around.

Which isn’t to say that I don’t fret about my appearance as much as most other women my age. In a culture that values youth and physical perfection, where magazine ads feature models with Photoshopped features that defy wrinkles and flaws, I am quite conscious of the ways that scleroderma distorts my face.

There is the fact that my nose—generous, to begin with, like my father’s and his father’s—has narrowed and looks and feels pinched. There are the red, blotchy telangiectasias (dilated capillaries) that speckle my nose and dot my right cheek. There are my droopy eyelids, which have fallen over the years due to thickening. There is the asymmetry in my facial muscles, so that the right side is slightly weaker than the left, causing me to smile a bit lopsided. And there are the deep furrows around my lips, resembling a cinched purse.

Most of this I can address with some artfully applied makeup. A couple of years ago, I discovered Arbonne products, which are vegan, extremely lightweight and moisturizing, and use a wonderful color palette that complements my skin tone.

But my deep mouth creases are another story. When they first developed, around the time I was approaching menopause, I was, quite frankly, horrified. This sounds shallow, I know. There are many other, much more horrible things that can happen to you than to develop ugly mouth wrinkles. And yet, self-conscious me hated them and wanted to do something about it.

So I consulted with my rheumatologists and a couple of specialists. A plastic surgeon advised me not to frown or look down, because it exaggerates my creases, and suggested Botox. The idea of injecting a substance that would relax my face into a mask seemed ridiculous, so I passed on that (and him). A cosmetic dermatologist suggested a more promising alternative, injecting hyaluronic acid (HA), a natural filler used to smooth out “puppet mouth” (those long creases that run from either side of the nose to the chin), crow’s feet and other facial flaws.

Al was supportive, though he assured me I looked fine the way I was. He understood how I struggle with the way scleroderma has distorted my body and was willing to go along with my experiment. After doing a test of HA on the inside of my arm to be sure I wouldn’t have an allergic reaction, I went ahead and had the procedure.

This was not fun. First, the cosmetic dermatologist marked the worst creases with a felt-tip pen. Then, after numbing the skin, he stuck a very sharp needle beneath each line around my mouth to fill the furrows with HA. It hurt like hell. He gave me a stress ball to squeeze, which didn’t help much. Neither did the anaesthetic. I quipped how we’ll do anything for beauty, and he just nodded. Of course. I wondered what he really thought of me and all the other women who came to him, in vain, to try to reverse the aging process.

As expected, the skin around my mouth reddened and swelled for several days (I did this at the end of the work week, so most of the evidence would be gone by Monday morning). As the swelling receded, I checked my reflection frequently. Were the furrows gone? Did I look like my younger, healthier self again?

Alas, as weeks passed, I realized that all I’d gained were small lumps where the deep wrinkles had been. The effect wasn’t smooth and youthful. In fact, the HA caused the skin around my mouth to feel a bit tighter, because of the extra filling. When the substance fully absorbed, after about five months, I was relieved. No one ever noticed the difference (or if they did, they never commented), I could open my mouth more readily again, and we were going to save a ton of money.

And, at the risk of sounding Pollyannaish, I discovered a much wiser, free solution: My mouth furrows disappear when I smile.

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.

Stream of Consciousness

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It’s after 1:00 a.m. and I can’t sleep. One of my ulcers, that stubborn one near the tip of my middle left finger, won’t stop smarting. I try shifting positions, rubbing my hand, warming it under the pillow. Sometimes the pain is caused by a Raynaud’s spasm and eases as soon as my blood flows more freely.

But not tonight. I have to get up and redo the bandage. I don’t want to. It’s chilly in our bedroom, because I’m a fresh air freak and left the window cracked and it’s windy outside. But the ulcer stings and I can’t sleep. So I pull myself out of bed, grab all my hand stuff (bandages, Aquaphor ointment, Sorbsan dressing, cotton swabs, manicure scissors) and go into the bathroom so as not to wake Al (even though an overhead thunderbolt won’t disturb his slumber), turn on the light, cut off my bandage and redo the dressing.

This works, thank goodness. I must not have used enough Aquaphor the first time to salve the sore. Or maybe I didn’t cover the ulcer with a large enough piece of Sorbsan, an ecru-colored, felted material made of processed seaweed that binds with the ointment to create a gel-like cushion of protection. Or maybe it was the cheap CVS fabric bandages I use at night, which have some kind of waterproof coating that can irritate on occasion. I’m using my good, soft Coverlet bandages for this round. Not worth the night-time rationing routine.

So I go back to bed, snuggle under my blankets. And am wide awake.

Maybe it’s because I had to get up, even though my ulcer has finally quieted down. Or maybe it’s because I was writing well into the evening, eight hours of solid composing at the computer, working against a deadline to finish a client’s web content. Too much light from the computer screen before bedtime can affect your ability to sleep, I’ve read.

Maybe all that typing is why my finger was irritated in the first place. Except I don’t use it to type. I’ve become a master at touch-typing with only the fingers that can stand the pressure—and since I use a Mac wireless chiclet keyboard, the pressure is very light.

Maybe it’s because I’ve been immersed in words all day. When I write, I slide into a zone where an hour or two will disappear as the words fly from my mind, through my fingers to the keys onto the screen, and I won’t know what time it is. Even when I’m finished writing, the words whirl in my head, narrating story lines, fantasies, worries, what I have to do tomorrow, what I forgot to do today.

I lie in bed and the words swirl and swirl, until I remind myself that everything I’m thinking about will still be there in the morning when I wake up. I pour all the words into a large square box—this one is sea-foam green—close the lid, lock it and put it on a high shelf in the back of my mind where I know I can access it tomorrow.

Usually this works. Sometimes it doesn’t. Tonight, with God’s grace, it does, and I fall asleep. In the early morning, when my dreams are so sharp that I’m certain they’re real, I’m convinced I’ve been awake all night.

The sun shines through our bedroom shades, then slips behind a cloud. Wind puffs the curtains of the one cracked window. Half an hour after my cell alarm vibrates, I realize that I did sleep, for six hours, after all.

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.