Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Harbingers

· · 9 Comments

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

· · 4 Comments

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.

Soloing

· · Leave a Comment

One of the scary things about having a chronic disease is wondering what will happen if the people you love and depend on are no longer there. Many cope, living on their own. I have great respect and empathy for those who do, because it’s hard and exhausting to deal with all the aspects of managing your health by yourself.

For the past 10 days, I’ve had a taste of that experience, as Al has been away in Israel visiting Mindi, our eldest. Last year we made the trip together to see her; this time around, we had to economize, and since it’s very strenuous for me to travel that far alone, Al made the trip by himself. As I write, he’s in the air, on his way home from a great father-daughter adventure. I’m glad they had a wonderful visit, and I’ll be glad when he gets back.

I’ll admit, I was anxious about his leaving. In the 28 years we’ve been married, he’s traveled abroad a few times, but I have always had one or both of our daughters here with me. So this has been the longest stretch of time that I’ve had to manage by myself since I was diagnosed nearly three decades ago with an autoimmune disease that turned out to be scleroderma.

Friends have been a great help. We had a messy snowstorm the first weekend Al was away, and our good neighbors dug me out. I had several back-up contacts in case more bad weather swept through, but we lucked out with just rain and snow flurries that quickly melted.

I joined other friends for Shabbat supper on the two Friday nights during his absence, which helped break up the week and made for good company. I went to our synagogue’s Purim party. I took my regular evening Pilates and dance classes, and joined friends for weaving. I had plenty of work to keep me busy. I drove to New York to see our younger daughter, Emily, at her college this past Sunday.

So all of this has made for a very full stretch. But I also managed to injure my left wrist. Every time Al has been abroad, it seems I mess up one of my joints. I don’t exactly know how I did this—probably from lifting things I don’t normally lift, opening boxes or jars I usually hand off to him, trying to shovel the slush off the back walk instead of asking someone for help, or some combination thereof.

I saw my rheumatologist at Boston Medical Center for a regularly scheduled appointment last Thursday, and he thought I had developed some tendonitis. I’ve had my wrist in a brace for nearly a week, and today is the first day it feels close to normal.

Yes, thank goodness, my body does heal, even when I’m frustrated and impatient. But I’m also tired. All the tasks that you share in a marriage add up quickly when you’re going solo. Anyone who finds herself suddenly without a partner, by choice or circumstance, knows this all too well. When you have chronic illness as an extra partner, the fatigue factor intensifies.

This is what I’ve learned over the past 10 days:

Sometimes it’s nice to have the house to yourself and do everything exactly as you want, without having to negotiate. I’d be lying if I didn’t admit that I’ve enjoyed having my own space for a little while.

I can definitely manage on my own if I have to. This is reassuring, to the extent that I’ve had nagging doubts as my health has gotten more complex.

Next time, I’ll need to rethink how much help to ask for, what I can leave go and what is absolutely necessary. It’s not worth hurting myself or getting overtired to “get stuff done.”

I miss my husband. I’m glad he’ll be home soon.

Photo Credit: Funchye 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.

Going the Distance

· · 2 Comments

I often think how grateful I am to live within an hour’s drive of Boston, home to some of the world’s best medical experts. It’s a major advantage to have access not only to rheumatologists who specialize in the complexities of scleroderma, but also to cardiologists, pulmonologists, hand surgeons and myriad other specialists who have seen enough patients with scleroderma to understand all the problematic permutations of the disease.

One of my specialists that I value most is my podiatrist. The man has literally saved my feet. Scleroderma causes thinning of the fat pads in your soles, and walking can become quite painful without proper orthotics. Before I began seeing him about five years ago, I was beginning to limp, not only because my natural cushioning was wearing away, but also because the skin on the bottom of my feet was stiffening and cracking and developing corns that I could not remove.

The first thing he explained was that I needed cushiony, full-sole orthotics, as opposed to the hard, three-quarter kind that had been prescribed by a less knowledgeable podiatrist about a year earlier. He then put me on a schedule of monthly visits and regular use of prescription-strength ammonium lactate cream to soften my skin. He also recommended shoe brands that could accommodate the orthotics. I’ve since discovered Merrell and Clarks, my two go-to brands that make comfortable, attractive, lightweight shoes with removable insoles.

Thanks to my podiatrist’s attentive care, my feet healed, and for the most part, I’m able to get around with a nimble stride. I see him every six weeks to trim my toenails (this has also become pretty difficult, as my handgrip has weakened and my eyesight is not what it used to be), shave calluses and corns, and stay on top of the calcinosis that has developed in a couple of toes.

So, when he decided several months ago to move from Boston Medical Center to South Shore Hospital, I decided to follow him. The drive, I reasoned, would be about the same length of time—longer in terms of miles, but comparable when you factor in the traffic volume typically encountered when driving into Boston versus approaching the Cape.

However, my last visit, this past week, took an hour-and-a-half to get to his office, an hour in the waiting room (growing pains for the new practice), and would have taken another hour-and-a-half to get home if I hadn’t paired the appointment with other personal business in Boston that afternoon. All told, a four-hour commitment to take care of my feet.

That’s a lot of time. In essence, every six weeks I need to spend a half-day to be sure I can keep walking. Well worth it. But still, a lot of time.

And that’s just one of a handful of regular appointments I need to keep in order to stay as healthy as possible. Most are in Boston. Most take a half-day because of travel and waiting time.

When I get annoyed by the many hours required to keep on top of all this, I remind myself that there are others who have to travel much farther to benefit from this level of quality care. I try to look at it as time that I devote to myself. I listen to classical music on the radio as I drive and use the mental space to problem-solve projects I’m working on, much as I used to do when I commuted regularly to Boston for my former job. I often bring reading material for the waiting room that builds my writing or marketing skills, so I can make the most of any delays.

Still, it’s a lot of time. And there are weeks when appointments stack up and I feel like I can’t get anything done. Working for myself these past three years makes it easier, since I don’t have to explain time out of the office to my boss anymore. But there are many other things I’d rather be doing than driving over a hundred miles roundtrip to see my docs every few weeks.

That’s when I daydream about a Star-Trek-like medical center, where your doctors just wave a medical tricorder over your body to diagnose your illness and cure you of same.

Beam me up, Scotty.

Photo Credit: shaggy359 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

· · 6 Comments

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.