Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

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.

A Mind of Her Own

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Today Emily turns 21. She’s ecstatic. I’m in shock.

How can it be that our youngest daughter is now a legal adult? Everyone says, even if it doesn’t seem that way when you’re bombarded by toddler tantrums or adolescent angst (not all that different), your children grow so quickly. Yes.

Bringing Em into the world involved significant risks and challenges. Scleroderma can cause kidney failure in the third trimester. We had adopted our oldest, Mindi, as an infant, because my disease was too unpredictable to try to get pregnant. Once my health improved and I’d tapered off medication that could cause birth defects, we had to overcome my issues with infertility. Conception, seemingly so elusive, took five tries with the help of specialists.

Amazed to be pregnant after doubting for so long that it would ever be possible, I was on a high for the first two trimesters. No morning sickness, and I reveled in my new-found warmth during the winter, thanks to my pregnancy-enhanced blood supply. But by the third trimester, things got more complicated. Because of my scleroderma, I couldn’t deliver enough nutrition through my placenta, and she (though we didn’t know it was a she) was small for her gestational age. In order for her to receive needed nutrients to fully develop, I would have to deliver early, around 36 weeks, after an amniocentesis to determine if her lungs could handle life outside the womb.

But we never got that far. At 34 weeks, I developed preeclampsia and landed in the hospital for six days. Lying in my hospital bed after Al went home the first night, limp and heavy from the magnesium sulfate drip that was countering risk of a seizure, I thought of Al’s mother, who had died just six weeks earlier from congestive heart failure and complications from two strokes. She hated going into the hospital each of many times over a half-dozen years. At that moment, scared and lonely and vulnerable, unable to move freely, I fully grasped how she must have felt, trapped in a body that she no longer knew.

After a day of observation and tests, which left me feeling ever more helpless, induced labor began. This was not fun. Seventeen hours of increasingly intense contractions later, the doctors gathered around my bed for a powwow. The only way to cure preeclampsia is to deliver the baby, and they wanted to do a C-section. My cervix was still barely dilated, my kidneys were shutting down and my blood was taking more than 20 minutes to clot, so there was no hope of an epidural block. I was also, though I didn’t fully understand in the midst of all that pain and anxiety and exhaustion, at high risk of hemorrhaging. All of this was taking place in the midst of a major March snowstorm (not unlike today’s) that had prevented my wonderful perinatologist from getting to the hospital.

Just at that very moment, Em—always one with a mind of her own—decided it was time to come out the natural way. I had a sudden, extraordinary need to push. My water broke. Less than two hours later, she emerged on waves of forceful contractions that felt like I was turning my body inside out during delivery. I was yelling so loudly that the male medical student who had joined in to observe told me later I sounded like a madwoman.

My placenta snapped during the delivery. To spare me any more pain, they knocked me out with a very powerful general anaesthetic before extracting it. I barely saw Em, swaddled in blanket and white cap, before she was whooshed away to the NICU and I passed out.

When I woke up, I was hallucinating. I saw Al smiling at me over the rail on my bed (this much was true), framed by a vision of Mindi’s Playmobile figures hovering over primary-colored shapes. Later, when I overheard some nurses discussing my IV, I was convinced they were trying to poison me and take my baby away. Al brought Mindi, then only three-and-a-half, for a visit, but I was still too weak to be able to give her a good hug or be much of a mothering presence during this major transition in her own young life.

I didn’t get to meet Emily until the following afternoon. It was late on a Friday. By then the magnesium sulfate had washed out of my system, and I could control my muscles again. I got myself dressed in the mint green turtleneck and rust jumper I’d worn to the hospital and was wheeled over to the NICU to see her.

There she lay in her isolette, all three pounds and slightly less than six ounces, with IV tubes and monitor leads snaked all over her tiny, wrinkled body. Al had already held her earlier that day, so I couldn’t take her out of the clear plastic box-bed a second time. Instead, I put my hand through the side access hole, stroked her downy back and sang to her—Shalom Aleichem, the traditional Friday night greeting that welcomes guardian angels into the home for Shabbat. Afterward, Al told me he had sung her the same melody.

One month later, at four-and-a-half healthy pounds, Emily finally came home. We placed her in her red pram’s detachable bed on the dining room table. There she lay and looked and looked for more than an hour at all the colors—the cream-and-rose wallpaper, the moss green curtains, the crystal and brass chandelier, our admiring faces. So different from the pale hospital setting where she had lived her first weeks.

After I’d regained my strength, I enthused to my rheumatologist that I’d like to do it again. He suggested that might not be such a good idea. “Do you have any idea how sick you were?” he asked. Always good to have people in your life who tell you the truth. It took every ounce of energy I had to parent my two amazing daughters, now, officially, both adults.

Today at 21, Em is a petite powerhouse, a young woman of strength and determination, with a clear goal for her remaining year of college, graduate school and beyond. Smart, beautiful, funny and sweet, she has a gift for words, an analytical mind and a great desire to help others. We chat often, and I look forward to her visit home later this week for her spring break and Passover.

She has blessed us, many times over, by her presence in this world. On this milestone birthday, we have much to celebrate.

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.

Blizzard Warning

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The sun is shining, the snowplows are revving and Al is raking two feet of snow off our kitchen roof as I write. Twenty-four hours after Nemo blasted through New England, our street is a canyon of bright white snowpack amidst four-foot walls of plowed drift. Evergreens bow, weighted by mounds of melting snow, while barren hardwoods stand tall and unbroken, spared accumulation of Nemo’s fine, cold powder.

We went to bed Friday night listening to the wind howling overhead. The snow was blowing sideways near midnight. I watched it from our bedroom window, swirling and streaming in the streetlamp’s golden glow—reassurance that the power was still on.

Around five I awoke, unable to go back to sleep. Overnight, true to predictions, the snow had piled more than two feet high. Al’s car, parked in the drive, was half-buried. Only the  yellow cap of the fire hydrant at the front of our lawn was visible. The wind drove snow at a 45 degree angle. Flakes swirled and danced like millions of down feathers in a colossal pillow fight. And still, the power was on.

Once again, we got lucky. Through Tropical Storm Irene, through the 2011 Halloween Surprise, through Super Storm Sandy, through severe ice storms of recent years, and now through Nemo, we’ve had light, heat and hot water. I’m almost afraid to state it and tempt fate.

This has become my constant fear, whenever I hear news of a major storm’s approach: What if we lose power? With extreme weather the new normal, it is now inevitable that strong winds plus precipitation on a large scale will cause massive power outages that can incapacitate for days and even weeks.

At its peak, Nemo knocked out power for 650,000 families and businesses in Long Island and up the New England coastline; that number was halved by Sunday. Still, losing power in a record-breaking winter storm means waiting in the cold for your turn on the utility company’s long punch list. This is what scares me.

Because of my Raynaud’s and poor circulation in my hands and feet, I simply can’t stay in a cold house for long. Well before the pipes might freeze, I will go numb. We have yet to invest in an emergency generator, but if the extreme weather patterns persist, this may become a necessity in a few years.

I hate thinking this way. I used to love snow as a kid. A storm like Nemo would’ve had me itching to run outside and build a snowman, or flop on my Flexible Flyer to slide down the hill in our back yard. I would’ve played outdoors until the snow turned blue at dusk and I lost all feeling in my fingers and my teeth chattered. The next day I would’ve raced out to snap icicles from the eaves and slurp them like popsicles.

As Nemo kicked into gear on Friday afternoon and I walked Ginger in the mere two inches that had accumulated so far, I watched children a few houses up the street slipping and sliding in the snow. It looked like fun.

I chose to live in New England because I love the full four seasons, including winter’s magical frosting of the landscape. I don’t want only to think of weather in terms of the risks involved. Storms are part of Nature’s cycle.

And yet. Now every significant storm has an ominous edge. There were plenty of online jokes about naming this one Nemo, moniker of the little orange-and-white clown fish of Disney’s animated pantheon. But Nemo was also the name of the vengeful, tormented submarine captain in Jules Verne’s 19th century science fiction novels, Twenty Thousand Leagues Under the Sea and The Mysterious Island.

In Verne’s world, Nemo raged against oppression and British imperialism, sinking war ships and rescuing castaways, living by his own law under the seas. The storms that now confront us are Nature’s payback for humans’ destroying carbon reserves and wasting the planet. What we’re experiencing is just a taste of even more severe weather to come, if we fail to act.

I want to believe that we humans are creative, adaptable and capable not only of coping with the severe consequences of global climate change that we’ve brought upon ourselves—but also able and eventually willing, collectively, to reverse the trend, at least for our grandchildren and future generations.

Home generators may be the immediate response to ensuring personal safety during extreme weather. But if we’re really serious about reversing global climate change, we need to take responsibility for much more than our own homesteads. And we need to start now.

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.

Toasty

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Living in New England with scleroderma presents its challenges. Especially in the depth of winter, when temperatures have been hovering between teens and twenties of late.

Keeping our house warm gets expensive. We have a combination of steam radiators fueled by an oil burner and electric baseboard heat. Unlike many of our friends, who manage heat bills by setting their thermostats at a frugal 64 degrees and wearing lots of sweaters, I can’t function at that temperature.

This has become even more of an issue since I began my home-based marketing consulting practice three years ago, after the college where I’d worked for 12 ½ years sank into serious financial difficulties and went through a series of layoffs, including my award-winning marketing department.

Since I’m now at home during the day, we can’t set the thermostat down, and our heating bills have been astronomical. So this summer, we decided to take advantage of a state energy loan program, insulate our attic and install highly efficient heat pumps. It’s taken months for all the loan paperwork to go through, and the heat pump contractors finally arrived last week.

But not before our 30-year-old boiler broke. Two Friday mornings ago, I was washing my face when the hot water pipes started clanging. The toilet groaned when flushed, and dirty water filled the bowl. Thinking maybe the city was doing some kind of repair work, I checked the DPW’s Facebook page (a sign of the times, the best way to find out details during storms, power outages and maintenance). But, no, the only post was a picture of city workers clearing storm drains of snow and ice.

With the kind of magical thinking that takes over when you suspect the worst and don’t want to believe it, I continued my morning routine. But as I washed my breakfast dishes, the pipes groaned again, shuddered and then, nothing. The hot water stopped running altogether.

Down to the basement I went to investigate. And here is why I’m glad, despite the roller-coaster ride of life as a freelancer, that I work at home. The boiler was spewing steam, and a copper tube that linked to the hot water tank had cracked and was gushing water all over the concrete floor.

I flipped off the boiler’s power switch, ran upstairs and called Al at work. What he could do from the hospital was unclear, but this was my reflex. As it turned out, his beeper was being covered by a fellow social worker, and I couldn’t get through.

So I ran back downstairs and tried to figure out how to shut off the water. The obvious lever wouldn’t budge. Neither would the shut-off knob farther up the pipe. My hands simply weren’t strong enough to turn either.

So I ran back upstairs, found the plumber’s number and made a panicky call. With help on the way, I grabbed a big pan, ran back downstairs, found two small tubs, and tried to catch some of the water. But, of course, I couldn’t lift the tubs once they were full—too heavy. Again, my hands just wouldn’t let me do what I wanted.

I was starting to freak out, feeling totally helpless to stop a major flood in the basement, when Ginger barked upstairs. The plumber had arrived.

As it turned out, he couldn’t flip the shut-off lever, either. It was frozen open. So it wasn’t my hands. But he could turn the knob, as well as the main water shut-off to the house (Note to Self: From now on, know how to do this!). With his help, we were able to sweep most of the water into the floor drain, and I soaked up the rest with newspaper. He repaired the broken tubing.

But. The boiler was still too hot to refill. I called the oil company, and over the course of the afternoon, we discovered that (a) the low water cut-off valve was so corroded, it had failed to shut off the boiler as the water drained out and (b) the cast iron tank had cracked as a result. Even with the new heating system about to be installed, we had to replace it to run our hot water and provide back-up to the heat pumps if the outdoor temperature drops below 10 degrees.

One week after having a house full of contractors working on the boiler, adjusting our radiators and hot water system, and installing the heat pumps, we are now almost ready to deal with New England winters. There’s a bit more work on the new system to complete. We’re still waiting to hear from our insurance company, but hopeful that most of the boiler expense is covered. We’ll be paying for the heat pumps for the next seven years (no interest), but even still, expect to spend less on the monthly loan payments than we have been spending to keep the house warm.

Soon, with the click of a remote control, I’ll have instant, steady heat in whatever room I’m in, using no more energy than it takes to power a 75 watt light bulb. Plus an energy-efficient boiler for ample hot water. Despite the boiler debacle, well worth the investment.

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.