Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

The Random Factor

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Every morning, once I’ve worked the kinks out of my joints, made the bed and done some stretching, I wash my hands and sit down with manicure scissors, clippers, nail file, tweezers, ointment, bandages, wound dressing and moisturizer to tend my fingers. I pick and nip any shreds of dead skin, clip nails that have split or splintered at the corners, file away rough skin patches and inspect for signs of inflammation. Then I treat and bandage any open ulcers and slather on moisturizer, rubbing and wringing my hands over and over until the skin no longer feels sticky.

This is how I try to protect myself from the world—all the inevitable bumps, bangs, cuts and bruises, as well as all the nasty germs that could invade my body through cracks in my skin, inflicting pain and havoc.

It takes time, this daily ritual, sometimes five minutes, sometimes a half-hour, depending on what I did with my hands the day before, how well they have healed in moisturizer and white cotton gloves overnight, and the random factor.

In statistics, random factor analysis is used to determine whether an unusual observation—a data outlier—is caused by random events or some underlying trend.

Each morning, as I clip and nip, I perform my own informal random factor analysis: Did I get this ding when I banged my finger on the kitchen chair? Is this soreness on my pinky from tapping too often on my iPhone? Does this nail-bed inflammation stem from forgetting to wash my hands when I got home after running errands and using the germ-covered keypad at CVS without my gloves? (All random events.) Or is the increased number of recent ulcers due to the extremely cold and fluctuating temperatures these past few weeks? (An underlying trend.)

Trends, such as weather patterns, are a bit easier to cope with, once identified. I just need to dress with greater attention to the forecast. More layers. Don’t mothball the down coat or sweaters quite yet. Keep those scarves and wrist-warmers handy.

Random events are the most challenging because, by definition, they’re random. I have no idea that I misjudged the distance between my finger and the back of the kitchen chair as I reach to pick my wallet off the table until I feel the pain. I can’t anticipate an ulcer on my iPhone pinky when for months the finger has been fine and I haven’t changed my frequency of tapping and texting. I don’t always get an infection every time I use a check-out keypad bare-handed, though I’m beginning to douse my hands in antibacterial hand cleaner as soon as I get back in my car, just to be safe.

You could say that I’m constantly adjusting and adapting my protective behavior as I continue to gather more data points.

But random is as random does. You just can’t anticipate all the bad stuff you’re going to run into every day. Or, to be fair, all the good stuff, either.

So my morning ritual is as much a meditation on my state of being as it is a random factor analysis. Here is where my fingers are today. This is how the rough patch of skin feels before and after I file it down. That is an incipient hangnail in need of trimming before it gets worse. Here is how much dead skin I can cut away to sense more through my thumb. That ulcer still needs a bandage. This one looks like it could go without, finally.

Rub, wring, rub, wring. The moisturizer absorbs into my pores, a silky, invisible film to keep my skin flexible and ready for whatever the day may bring. This is how I try to protect myself. This is how I face the world each morning.

Photo Credit: topher76 via Compfight cc

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.

Glass Half Full

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I finished this post about an hour before news broke of the bombing at the Boston Marathon yesterday. By comparison, it feels trivial. But I share it here, today, nonetheless, because life goes on. My thoughts and prayers are with all those affected by this insane tragedy. Life is precious. We need to cherish what we have, whatever the challenges, and support each other through the struggles.—EH

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Last Thursday I dropped my iPhone in a glass of seltzer. Fortunately, thanks to its sturdy Otterbox case, it didn’t get ruined. Thanks, also, to a good friend who removed the case (not something I can manage very well with clumsy fingers) and zapped a few hidden drops of seltzer with pressurized air, the phone was thoroughly dried before I used it again.

This is only the most recent episode in a recent spate of dropping stuff. Lately, things seem to jump right out of my hands, leaping to freedom before they crash—or plop—as the case may be.

I’ll pick a knife or fork out of the cutlery drawer, only to watch it spring from my fingers and skitter across the floor. Or my toothbrush will fling itself into the sink. Or the cordless phone will take a swan dive.

It’s quite startling. I have yet to figure out what cues I’m missing, but I suspect it’s due to some kind of nerve damage in my fingers from years of Raynaud’s—a dichotomous mix of lost sensation and hypersensitivity to any ulcerations or skin damage. It’s also a matter of the object’s size and weight—small enough to be picked up with one hand, but just heavy enough to require a firm grip—which I don’t really have any more.

My hands don’t believe it. Relying on decades of kinesthetic memory, they grab, reach, scoop, turn and twist without conscious direction. Of course I can hold onto that knife. Of course I can grasp my toothbrush. Of course I can pick up the phone. Even when I can’t.

In a sense, this is related to the phenomenon of the phantom limb—when a part of the body is amputated, but still feels as if it’s attached and functioning as always. Although my fingers and hands have deteriorated over the past 30 years, I often still operate as if they hadn’t changed. Then I reach the wrong way for something and smash a fingertip because I misjudged the distance, relying on kinesthetic memory instead of visual cues. Or I assume I can complete a task in a third of the time it now takes me, despite repeated experience that my hands just don’t function that efficiently. Or I drop stuff that I think I’m holding firmly, overriding feedback from fingers to brain.

So far, thank goodness, I haven’t done any serious damage. I haven’t broken anything valuable, I haven’t hurt anyone or myself and I haven’t lost anything important—at least, as far as I know. I’m more vigilant when picking up things that are fragile. I use my forearms for extra support when carrying heavy objects. I try not to rush tasks that require dexterity.

But it is unnerving. My hands, damaged as they are from scleroderma, have always been my trusted helpers. I don’t want to believe that they—I—simply can’t do for myself as I used to. I’ve accepted my limitations, to a large extent, but at another level, still can’t.

Dysfunctional, perhaps. All the leaping forks, toothbrushes, keys, phones, makeup applicators, pens and other objects craving to demonstrate Newton’s Law of Gravity may well be vying for my attention, willing me to fully acknowledge the reality I’ve been living with for years.

And yet. There’s a balance to be struck, between accepting limitations and not being defined by them. My fingers’ denial of sensory evidence to the contrary, my mind’s denial that I’m less able than I was before, are what keep me from sliding into a depressed, glass-half-empty view of my life and what the future holds.

Like Archimedes in his bathtub, when my iPhone plopped into the seltzer, it raised the fluid level in the glass. Worth noticing. Worth rescuing. Worth figuring out how not to do it again. But otherwise, not worth much more than a laugh and a sigh of relief.

Photo Credit: EssjayNZ via Compfight cc

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.

Harbingers

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I think it’s spring. At least, it’s supposed to be, according to the calendar. But we should fire the groundhog.

This has been one long, cold winter here in Massachusetts. Our lavender crocuses just sprouted last week, but they’re hiding from freezing night temperatures and sharp winds, petals clasped against the cold, praying for the warmth that’s supposed to come with longer daylight hours. When the sun’s rays trickle into their corner of our backyard garden for a few hours in the afternoon, they gape as if astonished, exposing fuzzy stamens the color of flame, welcoming bees.

I’m slowly exposing my hands, too. Spring in New England has always been my toughest season, a tease of warmth to come, but mostly chilly and damp with harsh, sharp breezes that stir the sandy dregs of road salt, stinging eyes of those unwary.

The cycling from cold to warm to cold again exacerbates my Raynaud’s with frequent episodes of icy lavender fingers and numbness, ulcers that sting as if singed, new sores appearing weekly. The sensation is captured precisely by poet Elizabeth Bishop’s description of frigid seawater in At the Fishhouses:

If you should dip your hand in,
your wrist would ache immediately,
your bones would begin to ache and your hand would burn
as if the water were a transmutation of fire
that feeds on stones and burns with a dark gray flame.

Last year at this time, I had nine ulcers and a bout of cellulitis that took several blasts of antibiotics to cure. But no significant ulcers this season, so far. This is quite extraordinary. I’ve been very vigilant since I discovered a few months ago that I could heal my ulcers and reduce the number of ever-present bandages by wearing white cotton gloves and paraffin hand cream at night—this, a serendipitous solution to the fact that my skin started shredding in reaction to bandage adhesive.

Today, I have only my right thumb in a bandage, mainly because a grain of calcium is slowly emerging through a cracked ulcer. That’s it. I’ve been out and about for the past four days with no bandages at all. Truly amazing. I tote my moisturizer and apply it strategically throughout the day, type at my computer using cotton gloves to protect my skin and generally try to pay attention to what I’m doing so as not to cause any collateral damage to my fingers.

Our new heat pumps have helped, too, maintaining a much more even temperature throughout the house than our old steam radiators ever could. I still feel the cold all too readily, but at least I can quickly adjust the heat for the room I’m in and sense warmth within minutes. This, I’m certain, has aided my hands’ miraculous recovery.

So, even as my fingers are in happy denial, I guess it’s fair to assume that spring is on its way, at last. The weather forecast predicts temperatures in the ‘60s and low ‘70s this week. Slender blades of grass tinge lawns green. Buds mist the maples that line our street with the barest hint of chartreuse and crimson. Children’s bikes and basketballs litter front yards. Long-limbed girls from the nearby Catholic high school’s track team run down the street in shorts and tees, gleaming ponytails abounce. As Al rakes away winter’s detritus, the turned earth smells pungent with promise. Time to switch out my snow tires and at least consider bringing my down coat to the cleaner’s. But maybe not ’til April’s end, just to be certain.

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.

Murmuration Liberation

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“All religious rituals, perhaps like all art, are attempts to gesture toward what cannot be spoken, to invoke it and make it palpable, a sense of the world too immense to be summed up in words without sounding like prattling children.”

Jonathan Safran Foer
New American Haggadah

Passover comes early this year, the evening of March 25. As I write, Al is working on the kitchen, doing the final cleaning and kashering and countertop covering before we switch all our dishes over to the kosher-for-Passover cookware and red-and-green glass settings that were once his mother’s. It’s a lot of work, if you observe all the stringent Jewish laws around Passover food preparation—and the source of much good-humored communal kvetching: If this is the Feast of Freedom, then why do we feel like slaves in the kitchen?

This annual cleaning ritual is just one step in the process of prodding yourself to focus on retelling the story of the Israelite’s Exodus from Egypt. Upending your kitchen, removing all traces of leavening from the home to recall how our ancestors left in such haste that they couldn’t wait for bread to rise, causes you to stop and examine not only your surroundings, but your intentions:

How do you enslave yourself? What weighs you down in your life? What holds you back? What obstacles do you throw in your own path? What burdens can you lay down, freeing yourself to live a more fulfilling life of generosity, gratitude, grace and compassion?

Everyone who participates in the Passover seder is asked to imagine what it would feel like to emerge from slavery to freedom. There are so many ways we imprison ourselves. The ritual presents a formidable challenge, if you take it seriously.

Chronic health issues, of course, create their own form of imprisonment. Scleroderma, at its most virulent, feels like being trapped in your own skin. Other diseases bring their distinctive, cruel pains and restrictions. Our bodies, so complex and miraculous, can fail us in as many ways as we take them for granted.

But the feelings of constraint, the constant struggle against pain and physical limitations imposed by chronic illness, are only the first barriers to overcome—the barbed-wire-topped prison walls. The harder, interior cell to penetrate is the one the mind constructs.

I fight this all the time—that murmuring voice of angst, the one that worries, with each recalcitrant ulcer, whether I’ll get another infection that could land me on IV antibiotics; with each staircase that leaves me short-winded, how much harder it will be to get around in five years; with each additional minute it takes me to work around my clumsiness, how much longer I’ll be able to manage for myself.

I know this doesn’t help. I know I need to focus on the present and all I have to be grateful for. I know that catastrophizing is self-defeating. But the voice still murmurs.

Paradoxically,  the key to unlocking this particular, insidious form of self-imprisonment isn’t to silence that voice, either through self-lectures on the impropriety of self-pity or sheer force of will. The more I try to suppress it, the more the murmuring seeps into my consciousness.

No. The only way to soothe the fears is to acknowledge them. Loss, and fear of more loss, is as understandable and human as it can be emotionally crippling. Chronic disease, whatever its form, brings losses. Giving yourself the gift to grieve what you’ve lost and feel self-compassion for what you’re going through is essential to coping, healing and moving forward.

After all the cooking and dishwashing and hosting and cleaning, after we’ve joined at the seder table with our cousins to retell the Passover story once again, that’s the release I’ll be seeking this year. And the one after that. And the one after that.

Image Credit: Illustration from Vaught’s Practical Character Reader, a book on phrenology by L.A. Vaught, 1902, Library of Congress Internet Archive, courtesy Public Domain Review.

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.

Why I Don’t Do Much Housework

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I like a clean house. And the older I get, the more I hate clutter. Do we really need all this stuff that just takes up room and collects dust?

The clutter issue has become more salient as I’ve struggled to keep our home as clean as I’d like. I used to manage most of the housework myself, years ago, when the girls were still young. Every Friday, while they were in school, I’d clean the house from top to bottom in preparation for Shabbat. I’d dust every tchotchke, vacuum under the beds, mop the bathroom and kitchen floors, the whole works. I was exhausted by the end of the day, when we’d finally sit down for our Friday night meal. But I also felt a sense of accomplishment and renewed calm, with our home restored to order.

This was before I got a full-time job and began commuting to Boston. It was also before my hands simply became too damaged to manage the work. At that point, we hired a cleaning service.

Over the years, we’ve taken a break to save money, only to rediscover that the only way to maintain my cleaning standards is to have someone come every other week to do all the heavy housework. I picked our current service because they use environmentally friendly products and are very reliable.

Still, it bothers me. There is something about not being able to do this myself that feels like failure. I’m sure this sounds silly. Women have striven for years to be free of the drudgery of housework. It shouldn’t be “women’s work” in the first place. (In all fairness, Al does help a lot around the house, with laundry, dishes and yard work, as well as grocery shopping.)

But the reality is, no one will ever clean my house the way I once could. Whenever I get aggravated and try to tackle the stuff that’s still not the way I want it, I end up hurting myself. Even if I wear gloves to protect my hands, I inevitably smash an ulcer or otherwise damage my skin.

Last Friday, when all the workmen who had been tromping through our house for the past two weeks finally finished connecting our new energy-efficient heat pumps and installing triple-pane windows, I looked at all the tracks across the kitchen floor and couldn’t stand to wait for our cleaners to arrive this week.

So I went out and bought a floor mop that sprays cleaning fluid so you don’t need to wrestle with a heavy bucket and wringing out a sponge mop.

This presented several unanticipated problems, however. First there was all the shrink wrap and plastic packaging to remove, one of my pet peeves that requires deft maneuvers to avoid mashing my hands. Then I had to pry open the battery holder with a knife because I couldn’t slide the compartment door open.

Then we came up one battery short. While Al ran to the store right after he got home from work to pick up more AAs (and stay out of my way because I was on a tear), I vacuumed up all the flotsam and jetsam from the window installation. When he returned, I began mopping, erasing every trace of work boots on the kitchen and dining room hardwood floors. This felt great. I’d actually managed to clean the kitchen floor on my own.

But. As soon as I’d finished, I realized my left ankle was sore, and my back, and my joints were acting up. One more reality check. I just can’t do what I used to be able to do.

This is what’s so frustrating. I’m sure it doesn’t really matter if our home doesn’t sparkle.  I know the extra degree of clean is all in my head. I’m grateful that we can afford some help and, in the process, support another woman entrepreneur. I just hate feeling like I have to rely on others to do something so basic as mop my kitchen floor. It’s one more reality of this disease.

So the only alternative is to make it easier for our cleaners to clean. And that means reducing the clutter. I have a long list. But it’s a worthwhile effort, and one I can still manage, without help—to decide what’s really essential.

Photo Credit: twicepix via Compfight cc

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.