Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

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.

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.

The White Glove Test

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Years ago there was a commercial—at least, I think so, because I can’t find it on YouTube, which is, of course, the repository of all things ephemera—that involved a nosey neighbor who wore white gloves. She would come to visit, and while her hostess wasn’t looking, check to see if there was any dust on the furniture by swiping a tabletop with one of her gloved fingers. Heaven forbid if she found a smudge and you failed The White Glove Test. Your reputation as a proficient homemaker would be ruined.

That was, of course, back in the day when women wore white cotton gloves to go shopping and white kid gloves to a cocktail party. My mother used to outfit me and my sister in white cotton gloves, black patent leather shoes and roll brim hats with grosgrain ribbons that dangled down our backs when we went into New York City for an outing. You could walk into any department store and find a variety of fine gloves for every occasion, and a saleswoman who knew how to fit you.

No more. So when I recently had the brainstorm to use white cotton gloves at night to relieve my ulcer-ridden fingertips from the bandages that have begun to shred my skin like cellophane—an insidious problem that seems to have arisen from some kind of reaction to the adhesive in the only bandages I can tolerate otherwise—I went online.

This is why I love the Internet. Type in a phrase like “white cotton gloves,” and you discover a variety of options plus an anthropological snapshot of how our culture has evolved from the formality of the early ‘60s to our denim-casual style of 2013. No dress gloves in the top ten. But you can find white cotton costume gloves from party stores and white cotton gloves from parade uniform suppliers.

Dress-up resources aside, the best option, for my purposes, were white cotton gloves from a photography supply site for handling archival film and other materials that shouldn’t get smudged by the natural oils in your skin. The kind of oils I don’t have enough of to keep my fingers lubricated and my skin elastic.

These lightweight gloves cost about eight bucks for a dozen pair. They are so thin, I can text with them on my iPhone. And they’re hand-washable.

Best of all, they seem to be helping my skin to heal. My new routine at night, after I shower and bandage any ulcers that are open wounds, is to slather my other fingers with a really good moisturizer, dip the most delicate tips in Aquaphor ointment (which I’d normally bandage for protection from overnight cracking) and pull on the gloves.

It feels absolutely luxurious to get out of those bandages, even while I sleep. And the treatment is working. In just a few days, I went from seven heavily bandaged fingers to four. This is a major accomplishment. Especially in January in New England.

If I’m not going out of the house, I can even cut back to two bandaged fingers, and either wear hand lotion under a pair of the white cotton gloves to protect my fingers while I type (I cut down the fingers on one pair and stitched them on my sewing machine to fit my stubby fingers for day use), or swaddle the most sensitive tips in white cotton-polyester finger cots—like little white socks for your fingers, which I also found online.

Now, you may ask, why didn’t I think of this before? I’ve spent a small fortune on bandages, ointments and dressings to protect my fingers over the last 30 years. Honestly, I don’t know. Probably because I’ve been so focused on finding the right bandage that it didn’t occur to me. Also, my finger skin is extraordinarily fragile because my circulation is lousy, even with medication. And I’ve had far too many infections. So I’ve always erred on the side of overprotection at the first sign of damage. What spurred this latest experiment was a conversation with a wound care specialist. When I showed him my shredding skin, he said you need to get out of the bandages. His ruminating about silicon finger protectors got me thinking about low tech solutions, and here I am.

The system is not foolproof. Of course, nothing with scleroderma can ever be that simple. I have to continue to be vigilant, to catch any skin cracks or scaling, and just keep moisturizing during the day. The finger cots really help with this, because I can moisturize any damaged skin, slip on the cot, and keep going.

Right now I’m typing with four bare fingers on my right hand. One, my ring finger, has had an ulcer that has refused to heal for at least six years. I’ve gone without a bandage or open sore on that fingertip for over a week. In January. In New England.

So, miracles can happen. I’ll continue to bandage up against dirt, bacteria and the elements when I go beyond my doorstep. And I know that my ulcers will continue to wax and wane. But at least I can get some relief at night. And who knows. Maybe white cotton gloves will come back in style someday.

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.

The Waiting Game

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I’m late for my doctor’s appointment. Per usual, I tried to finish just one more thing before I left the house. Then I hit road construction on the main thoroughfare between home and the medical center. By the time I have parked and found the right office inside the cavernous hospital, it’s a good 15 minutes past my scheduled arrival. And the doctor is running on time. Uh-oh.

Usually, it’s the other way around. But I get lucky. The waiting room is empty and my appointment doesn’t get bumped. I have my Kindle along, but I get distracted by the waiting room flat screen TV. It’s an episode of The Doctors, featuring a team of attractive specialists answering studio audience questions about their health. The ER doc wears a pair of blue scrubs and the others, white lab coats. The pediatrician is responding to a young woman’s query about the birth mark on her chest when the nurse calls me into my appointment.

Hoping to shave a pound or two off the digital scale readout, I take off my coat and shoes when she weighs me. We review my meds and allergies. She takes my blood pressure and temperature. We chat about the weather. As she leaves the room, I check the magazines in the wall rack. This exam room could use some better reading material—there’s a Vermont tourist glossy, a couple of trade health publications and an ersatz women’s magazine. I flip through its pages and scan the list of recommended books, wondering why it’s such a struggle to get published when all this dreck makes it into print.

My doctor is prompt and pleasant. He’s an infectious disease specialist, and we’re reviewing the plan we made over the summer to manage any future infections in my finger ulcers. After another year of on-again-off-again antibiotics, it was time to get pro-active. We marvel at the fact that I’ve had no infections since I saw him in June. I joke that all the germs have been scared off by his presence. He laughs. “I wish it were so,” he says.

We review what to do when the next infection hits. It’s a foregone conclusion. The only question is, how soon? There’s a piece of calcium migrating toward the surface of my right thumb. It’s causing me difficulty squeezing a tube of toothpaste and picking up cups. When it finally breaks through the skin, perhaps in a few months, there’s a high chance of infection. And, as the weather gets colder, my skin breaks down and is at greater risk, anyway.

We agree that I don’t need a follow-up. I’ll just call him when the next infection hits. I have the necessary antibiotics at home and know when and how to use them. He trusts my experience and my judgment. I thank him and say good-bye, for now. As I walk out through the waiting room, Family Feud contestants cheer and clap before the commercial break.

Leaving the hospital parking lot, I wait in a line of cars. It’s almost 3:20 and the shift is changing from days to evenings. On the drive home, I ease my car around the exposed man-hole covers that have turned the street under construction into a slalom course. I get home just over an hour after I left, pretty good for any doctor’s appointment—especially when I was the late one.

At the back door, Ginger is waiting patiently for my return. The sun casts long shadows. My right thumb twinges as I set down my Kindle, little green medical notebook and cell phone on the kitchen table. It’s almost time for our walk.

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.

A Little More Summer, Please

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How did it get to be September, already? It’s still in the ’70s, thank goodness, but the air is sharpening. Ginger tracked dried leaves into the kitchen yesterday. I’ve cracked the porch slider, but I’m wearing wrist warmers against the light breeze as I type.

I live in New England because I love the color and variety of all four season. But every year, I have a harder time letting go of summer. For months, I’ve been living in tank tops and shorts, walking everywhere in my sandals, rarely needing a sweater, even at night. After weeks of extreme heat, two of my finger ulcers finally healed, and I’m down to four bandages. Most Saturday nights, I’ve strolled with Al to the corner frozen yogurt stand for sundaes and savored the sweet-tart coldness.

It’s been many years since the girls were young and the coming of September meant the end of summer camp, no more punting for play dates or meaningful activities to fill all that free time.

The beginning of school was always a rush of excitement, new clothes, new notebooks and lunch bags, seeing friends and meeting teachers. I welcomed the return of structure and predictable schedules, the chance to clear my head and hear myself think once more.

Now, as the days grow noticeably shorter, September means I’m going to be cold again, soon. It’s an adjustment, as much psychological as physical. Back into sweaters and jeans, fleece and wool. Back into jackets and coats even while others are still in shirtsleeves. Back into gloves and hats. Back to numb fingers and hand warmers, too much time spent dressing to go out, too much time warming up when I come in.

September also means the approach of the Jewish New Year, a time of reflection and renewal. For this, I find the crisp air bracing, a source of energy and clarity as I review the year just past and start afresh. Here in Massachusetts, Rosh Hashanah, marked by apples and honey for a sweet New Year, always coincides with apple-picking season. It fits.

Still, I’m not quite ready to let go of summer. Leaves began falling from the Norway maples on our street a few weeks ago. I’m always surprised when I first notice, usually midway through August. It seems too early. So far, just a few leaves here and there, scattered across lawns like random shells washed up on shore. Most trees remain lush green, despite the lack of rain this summer and harsh heat waves of July.

But I saw someone using a leaf blower last week. Emily started classes as a college junior yesterday. Mindi is home for two more weeks before returning to Tel Aviv. Shadows lengthen as we spin on our elliptical path, farther from the sun.

Outside my home office’s bay window, the yews cast a prickled, shimmering silhouette on beige mini-blinds. A neighbor blasts hard rock out an open window. A small plane hums overhead. I’ll walk Ginger soon, wearing my jeans and a sweater. But still in sandals.

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.