Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

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.

Butterflies and Baseballs

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I’m surrounded by butterflies—sapphire Blue Morphos, frilly orange-white-black Lacewings, black Cattlehearts splotched red and white, bark-colored Owls flashing camouflage yellow-black eye-spots. They flit and flutter from orange and pink kalanchoes to a stand of rotting bananas to green cinderblock walls to more delectable flowers, sipping nectar through wiry black proboscises, wings beating as they sup.

It’s warm and humid inside The Butterfly Place in Westford, Mass., the perfect environment for butterflies and a great place for perpetually cold me on this crisp spring day that is my birthday. I snap digital photos, trying not to drop the camera, trying not to step on the Blue Morpho that has settled on the ground or the tiny, wingless birds that skitter under green foliage. One butterfly alights on my hand, briefly; another, on my sweater and crawls upward, staring at me with bug-eyed intensity until I shake it off.

A black butterfly shoves another off a flower, and I wonder how much I don’t know about these beautiful creatures. The Blue Morphos swirl in packs while other species fly alone. There is constant motion and competition for food. And there are butterflies with broken wings. This amazes me. I always thought a broken wing meant certain death. But, no, there are dozens with damage, still feeding and flying. I hesitate to take their pictures, wanting only perfection. Then I realize, how ridiculous. Beauty isn’t defined that way.

Later, I wander through exhibits in Lowell’s American Textile History Museum, fingering fabric, trying my hand at weaving on a small loom, learning how much labor went into making linen, wool, cotton and silk over centuries. I think about how grateful I am to be living here, now, and wonder how I would have survived—or not—in earlier eras, when so much work depended on manual dexterity and physical stamina.

I learn about cellos made from black carbon mesh and how many years it takes to grow organic cotton with natural color variation. And I learn about baseballs—how the cork and rubber pill is wound with 219 yards of three types of wool of specific, varying ply and color, plus a final 150 yards of white cotton-polyester yarn.

It’s the wool that gives a baseball its resilience. When the ball is struck, it wraps partly around the wooden bat, then snaps back into shape as it sails across the ball field. That’s how baseballs stay round, though bashed over and over.

When I get home, I notice a baseball lying on our back deck, hit there by one of our neighbor’s kids. No broken windows or smashed shingles. The ball is a bit smudged with dirt. I’ll toss it back when I get a chance, as I have many times, and watch it land with a soft thunk in their yard.

I’m 58 years old. I’ve had scleroderma for three decades. I’m glad to be here.

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.

String Theory

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I hate packaging. Especially shrink-wrapped anything. And pens or toothbrushes locked between a clear plastic bubble and cardboard backing. And those plastic boxes for mixed salad greens with cellophane edging and corner grips you have to pry open with a knife. And plastic cereal freshness bags that are sealed so tight you have to cut them with scissors, which makes it impossible to roll them up to keep the cereal crisp.

Just about everything we buy, with the possible exception of fresh produce, is so swaddled in plastic, cardboard and styrofoam that it requires major surgery to open the container. At least, that’s how it feels every time I struggle with scissors, box cutters, tweezers, knives and whatever other implement I can find to perform the operation. Often, I end up using my teeth—not good, I know, but since I lack useable fingertips, it’s the next best thing.

Of course, all this excessive packaging is not only bad for my hands (and teeth) in my postage stamp corner of the world. It’s also bad for the planet.

We do our part to recycle, buy recycled products and favor recycled packaging. We use cloth bags for groceries and say no-thanks to bags for items we can carry in our hands. I helped start our city’s comprehensive recycling program about twenty years ago. But recycling isn’t enough. We need to rethink our obsession with packaging and cut the excess.

I could be wrong, but it seems to me that packaging overkill started with the 1982 Tylenol scare in Chicago. When several people were poisoned by cyanide-laced Extra Strength Tylenol capsules, the manufacturer yanked 31 million bottles off the shelves, re-engineered their pain-killer to create tamper-proof caplets and created triple-sealed safety containers to regain market share.

It was certainly understandable at the time. But since then, everything seems to be double- or triple-sealed, whether necessary or not. Do we really need the tamper-proof cellophane seal around the neck of our over-the-counter pill bottles plus the peel-off seal over the bottle mouth (that shreds and sticks to the bottle’s lip when you try to peel it)? Or plastic wrap around each pair of rolls inside a plastic-shrouded eight-pack of toilet paper? Or shrink-wrapped index cards?

In a world where “see something, say something” announcements are the white noise of public spaces, ensuring that anything we ingest is safely packaged is a necessary paranoia. Someone did inject cyanide in those Tylenol capsules. Evil abounds.

But there’s tamper-proofing medicine and then there’s sealing something benign with so many layers of cardboard, glue, tape and plastic that you need a hacksaw to release the contents.

My dad was a master of this technique. Whenever I’d get a package from him in the mail, it would be hermetically sealed with clear plastic tape, packed with styrofoam peanuts, the buried goods wrapped in a taped plastic bag. There was always something very neat and orderly about his packages, the corners perfectly folded, the tape squared. Next to impossible to open, but a work of super-secure packaging art.

Perhaps, in this war-on-terror world, that’s what we’re seeking with all the pristine shrink-wrapped tissue boxes and triple-sealed moisturizer—reassurance that everything is nice and neat and safe. Nothing to worry about if your toilet paper is double-protected from the elements until you’re ready to use it.

Except, of course, that all that plastic ends up in landfills, and we’re running out of room.

Whatever happened to string? I can’t remember the last time I went into a bakery and left with a cardboard box of goodies tied with a white string bow, instead of sealed in a clear plastic, crush-proof clamshell. You could smell the cookies or pastries through the box, which made the trip all the more enticing. When you got home, you’d untie the bow and save the string in your kitchen junk drawer for another package, or tie it to the end of your white string ball.

Today, decorative mask string-holders, the kind that used to hang on the kitchen wall, the string’s tail dangling through the mask’s open mouth for easy access, sell for thousands of dollars as collector’s items. We’d do better to invest in R&D for safe, efficient, reduced-waste packaging, and start collecting string.

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.

On Turtles and Frogs

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When it comes to check-out lines, I’m slow. Really slow. Or so it feels when I’m standing at the register, fumbling to remove cash and slide coins back in my wallet without spilling them, fiddling with the receipt, finagling my wallet back into my purse.

If I’m shopping with one of my daughters, I’ll just let her handle the money so we get through the line quicker. If I’m shopping with Al, he takes care of the transaction. But since I usually do errands by myself, I’m often in this state of fumbling and feeling like I’m holding up the people behind me.

Lately, I’ve taken to hauling my purchase, change and receipt to an open counter where I can take my time to put everything back together. The other day I was in a store, arranging my stuff at an empty checkout counter, when the cashier at the next station asked if I needed help with an exchange.

“No,” I said, “I’m just getting organized.” To which she replied, “I wish someone would do that for me!” We laughed, and I felt better.

Some of this angst about being a slow-poke because my hands are clumsy is in my head. But I’m not imagining people’s impatience in the line behind me, either. We’re a society obsessed with speed.

When I was a marketing director for a dozen-plus years at a small New England college, I would always give my new employees a plastic turtle. Then I’d explain Herwitz’s Turtle Principle:

  1. Take the time to do the job right the first time, or you’ll end up spending twice as long fixing it.
  2. If our internal clients drive you crazy, draw into your shell and let it roll off.
  3. Pace yourself through the day, including lunch and breaks to clear your head. You’ll be more productive and keep your sanity.

Everyone loved these guidelines and our little department mascots, and many of my staff took their plastic turtles with them when they moved on to their next career step. While I’m sure it sounded odd and downright seditious to some of my colleagues who wanted us to jump to meet their demands, whenever we followed the Turtle Principle, we were highly productive, and whenever we succumbed to pressure and rushed to complete a project, we’d screw up.

Problem was, I had a really hard time finding those plastic turtles. I’d search in toy stores and party stores to no avail. It took creative thinking and serendipity to locate them. Plenty of plastic frogs, but few turtles.

Not surprising that the frogs outnumbered the turtles, when you think about it. We’re always hopping, running, chasing to keep up with
everything we try to stuff into a day. So often I hear people complain how busy they are, how exhausted they are—but the complaint often veils pride in accomplishment. How busy you are is also a measure of success. If you’re busy, you must be doing a lot of important things, right?

I get caught up in this cycle, too. Which is why I hate to waste time fumbling at the check-out counter, and why I’m so conscious of holding up people in line behind me.

But, really. What if we all took a few more minutes at the check-out line to stop, organize ourselves and chat with the cashier? Turtles are among the longest-lived creatures on the planet. In this 5-Hour-Energy, instant-download, five-minutes-ago-is-old-news world of ours, scleroderma or no scleroderma, I’d rather be a turtle than a frog.

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.