Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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.

Gift of a Lifetime

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Twenty-eight years ago this past weekend, on another mild December Sunday, about an hour before Al and I were to exchange our marriage vows, I arrived at our synagogue carrying the white satin-and-lace wedding gown I’d sewn myself. The sun was streaming through the lobby windows at the opposite end of the hallway. And there stood Al, so handsome in his white cutaway tuxedo. We startled as we glimpsed each other, then laughed. I ducked into the Bride’s Room to get ready and hide until the ceremony.

We still joke about that moment, all the excitement and anticipation and hopes for a good life together packed into an instant of recognition. It was my second marriage, his first. All I wanted was for everything to work out right, this time.

We’d dated for just nine months. But our introduction was through our rabbi, who had known Al since childhood. Sterling credentials. Still, there was no way to know, as we stole those glances on our wedding day, whom I was really marrying.

I began to understand within a few weeks after we returned from our Cape Cod honeymoon. Before our wedding, when we’d had blood tests for our marriage license, I’d told our internist that I’d been experiencing fleeting joint pain, and my hands had been swelling recently. The wedding band we’d ordered was too tight when it arrived, and the jeweler had to stretch the gold to fit my ring finger. Our doctor ordered an ANA blood test to rule out any complications and referred me to a rheumatologist for an evaluation in January.

Back from the Cape, I was happily setting up our apartment and not thinking much about all of this, even considered canceling the appointment as a waste of time. But, being ever-diligent, I went, anyway.

The appointment turned my world upside down. My rheumatologist explained that my ANA had come back positive, a sign of some form of autoimmune disease. He thought it was one of three possibilities: rheumatoid arthritis, lupus or scleroderma. We discussed my long history of cold hands, sun-sensitive skin since my early twenties, migrating arthralgia for the past year or so, struggles with fatigue. We examined my cuticles under a magnifying loop, and he pointed out the wriggled, abnormal capillaries. We scheduled more tests and follow-up appointments.

I came home and sat on the love seat in our small living room, barely able to speak. Al sat with me. We looked at each other. I felt like damaged goods. I was terrified. Of the possible diseases, I only knew that lupus had killed my literary heroine, Flannery O’Connor, at 39. I was 30. I’d never heard of scleroderma. Neither had Al.

Much later, he told me his mother had warned him when we got engaged that I looked thin and frail. Even though she liked me, she was concerned about what kind of a wife and mother I would make.

Whether or not he had second thoughts when I came home from the rheumatologist, however, he never expressed them. Instead, he put his arm around me, and we sat there as I cried about what might happen and why this had to happen now, just as everything in my life seemed to be finally working out.

In the months that followed, we struggled to learn how to cope and talk about my health. My body kept doing strange things without warning, like suddenly flaring with a bout of pleurisy when I was serving Friday night supper to Al and his mother, or creating so much pain in my wrists that I couldn’t lift a pan off the stove. I was often tired and had to pause from my freelance writing to nap in the afternoon. I couldn’t play tennis anymore. I got exhausted from hiking or camping. I couldn’t finger my violin, which Al had had refurbished as an engagement present. There were times when he seemed distant, and I didn’t know how to reach him.

But this turned out to be just a prelude. That fall, Al’s mother was hospitalized with the first of two strokes. Running back and forth from work to see her in the hospital several times each day, working a second job as synagogue youth leader, Al contracted mono. On an icy night, Thanksgiving weekend, he began rasping in his sleep.

I found him, eyes open, pupils dilated, drenched in sweat. On instinct, I slapped his face to make him come to. He started breathing normally again, and we were able to talk. Pumping adrenaline, on auto-pilot, I called our medical service and was told to bring him to the ER. For some stupid reason, I thought I could do this myself, but when I tried to get him out of bed, he collapsed on top of me. So I finally called the ambulance.

Over the next few days, we learned that Al’s spleen had ruptured and he was being held together by a blood clot. He came home from the hospital, sans spleen, with a long scar down his chest that was still healing, the day before our first anniversary.

For seven more years, we watched over Al’s mother, helping her through a second stroke, at-home care and the transition to a nursing home. We lived through many more family medical emergencies—for Al’s mom, my parents, our two daughters, Al himself. I became an expert at managing the details of everyone’s medical history and medications. My scleroderma progressed, slowly but relentlessly.

With time, some counseling, and a lot of practice, we learned how to talk about all of this, how to cope, and how to thrive in our marriage. Even as my disease has made itself at home as the unwelcome third partner in our relationship, Al has never failed to know the right thing to do or say about my own health challenges. He has patiently supported me when I needed him, but never babied me or made me feel like an invalid. He has always expected me to be just myself, my whole self, not this supposedly frail woman with scleroderma. We both understand, all these years later, I’m a lot tougher than that. And a lot more.

No way to know, as I glimpsed my husband-to-be in the sunlight on our wedding day. No way to know. But what a blessing. And what a gift.

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.

Fantastic Voyage

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In 1966, when movies still cost 50 cents and popcorn a quarter, I went with a friend to the Peekskill Paramount movie theatre on a Saturday afternoon to huddle in the crowded balcony with a bunch of other giggly, wise-cracking kids and watch Fantastic Voyage.

In what has become a sci-fi classic, a team of miniaturized surgeons enter the body of a scientist to zap a life-threatening, inoperable blot clot in his brain; the scientist is the only person in the world who knows how to make the miniaturization state last more than an hour, a secret essential to U.S. Cold War military strategy.

The team travels in a mini submarine through blood vessels and organs, battling antibodies along the way and a fiendish saboteur in their midst. If that isn’t enough to pique your curiosity, the movie stars a very young Rachel Welch and won two Academy Awards for some pretty neat special effects before the days of computer animation.

I’ve been thinking of this movie lately and just added it to my Netflix queue. One of the curious aspects of living with a complicated disease for so long is that I’ve seen more and more of my own internal landscape in recent years. With each new complication of my scleroderma, there are tests and more tests. And with digital imagery and optic probes the norm in medicine, and X-ray results easily viewed on an exam room computer screen, I’ve seen some pretty fantastic, albeit sometimes disturbing, sights.

There are the basics—all the many, many X-rays of my deteriorating hands, with each iteration revealing less bone at the fingertips and more starbursts of calcium floating under the skin. There are some foot X-rays, too, more recent, to confirm calcinosis in my toes.

There was the MRI of my chest a few years ago, when a CT scan to check rasping in my right lung (a possible sign of interstitial lung disease) revealed a questionable spot. It turned out, my pulmonologist explained while we toured the results on his computer screen, that the spot was nothing to worry about, just evidence that I’d contracted histoplasmosis years before, probably while spelunking one weekend near Pittsburgh when I was in grad school. As he scrolled through the MRI, the inside of my lungs revolved like the ceiling of a planetarium speckled with tiny white stars. Some scarring, yes, but so far, nothing too debilitating.

There have been regular echocardiograms to monitor signs of pulmonary hypertension, a late-stage scleroderma risk. Sometimes I close my eyes and try to doze through this non-invasive but often uncomfortable procedure, which requires the tech to press a rolling probe all over my chest and ribcage. Other times I’ll distract myself by watching the dark computer screen, with its blue and red images of blood surging through my heart, like an animated deKooning.

More tests. A CT scan of my brain and skull X-ray one Fourth of July weekend when I started to go numb on the left side of my face. Cross-sections of my very own convoluted gray matter. Yes, that’s where all those thoughts and images and feelings ping around. No stroke, thank God; rather, an inflamed trigeminal nerve was the culprit. But there was something eerie about seeing an image of my own facial skeleton, not some Halloween mask—the exact position of my eye sockets, nasal cavity, cheekbones, jaw—shades of what will remain when the rest of me turns to dust.

Of course, there have been all the routine images, too—ultrasounds of my womb when I was pregnant with Emily, the squashed elliptical pancakes of my breasts as seen on a mammogram, a slew of dental X-rays revealing how some of the roots of my teeth are resorbing—a rare scleroderma complication. Fortunately, I slept through my colonoscopy a few years ago.

I’ve seen the pink marbled walls of my bladder and the black-and-white image of a PICC line snaking into one underarm vein and then the other, when the first side was blocked by too much scarring. Not fun.

Most intriguing, once we got past the unpleasantness of inserting an optical probe through my nose, was a view of my pharynx. This took place when I saw a speech therapy specialist a few years ago to evaluate problems with swallowing. There are times that I feel like food gets stuck in the back of my throat, and I worry about choking. She handed me items to swallow—crackers, apple sauce, Jello—tinged with Kelly Green food dye, so we could see if the pathway to my windpipe closed properly as I ate. It did, a great relief, and also fascinating. I thought of a camera lens opening and closing when you squeeze the shutter.

I’m sure, as time goes on and my scleroderma does its own thing and medical technology becomes ever more sophisticated, I’ll see even more of my innards. Not the kinds of images you put in your photo album, like pregnancy ultrasounds. But miraculous, nonetheless. Even if the reason we’re digging around with probes and such is due to damage caused by an insidious disease, I’m still amazed by the view.

We take our bodies for granted, all the inner workings so hidden beneath our skin. If we could see what was really going on inside, all the intricacies of our interior universe, how the balance here affects the balance there, would we take better care?

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 New Normal

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After Sandy skirted most of Massachusetts and spared us from week-long power outages and cold I couldn’t manage; after the nail-biting climax to the presidential election; after the Nor’easter that turned out to be more of a threat than a reality in these parts; after a major water main broke in Worcester last week, forcing the city to shut off the entire water supply for the night and institute a 48-hour boil order that had me fretting about how to keep my ulcer-ridden fingers free of infection; after all that, when the water was clean and the power was on and the heat was working and the sun was out—I came home to my email last Wednesday to learn that Israel and Hamas-controlled Gaza were shooting rockets at each other and all hell was breaking loose just 44 miles from where our oldest, Mindi, lives in Tel Aviv.

It was about 8:00 p.m. when I sent Mindi a text to find out how she was doing—3:00 a.m. her time. I figured she’d see my message when she woke up for work.

A few minutes later, the phone rang. It was Mindi. She had been out late with friends, talking about the situation, finding out who of her friends in the Israel Defense Force had been called up. She sounded okay, tired but confident, and it was a great relief to hear her voice. We agreed she would check in again on Thursday.

The next day, I was working on a project, trying to concentrate while scanning whatever news I could find about events in Israel. American media were still preoccupied with the Petreaus scandal and election aftermath. I discovered the Times of Israel live blog, which gives excellent up-to-the-minute coverage. I sent Mindi a text about when I would be home to talk.

Around mid-day, the phone rang. I recognized Mindi’s caller ID and answered right away. Long pause on the other end.

“I know you’re going to hear about this, so I wanted to tell you there were sirens in Tel Aviv today,” she said. Her voice was measured, carefully paced so as not to upset her already anxious mother. She explained how she had gone to her apartment’s bomb shelter for a half-hour, no damage from the rocket attack, and she was doing okay. Neither of us knew what to say. I tried to stay calm and absorb her news. We agreed she would continue to let me know if there was another attack. I told her I loved her. We hung up.

I spent the rest of the day trying to understand what was going on. I couldn’t concentrate. I was fighting tears. I skipped my evening dance class to be home with Al. We spoke to Emily and shared all of our concerns. I read as much as I could online to stay informed.

Friday morning, I woke around 7:00 a.m. to find a text from Mindi that there had been more rockets, but she was fine. She sent me a picture from her iPhone of a Fox news reporter interviewing people in a Tel Aviv café, shortly after the all clear. I asked her if she knew where the public bomb shelters were. She wasn’t sure. I spent the next 20 minutes on my iPhone, researching, and discovered that underground parking garages are on the list. I sent her all the links. I wondered how this could be, that I was looking up information about bomb shelters in case my daughter is on the streets of Tel Aviv when a rocket lands. Later, as I read of Hamas’s threats to send suicide bombers into Israel if the IDF sends in ground forces to Gaza, I texted updates. “Please don’t ride the buses or go to cafés right now,” I wrote.

On Saturday, I was relieved to read that the IDF had placed a fifth Iron Dome anti-missile defense system in place to cover central Israel. Hours later, it downed another missile heading for Tel Aviv. Mindi wrote, reassuring me she was fine and with friends.

On Sunday, I woke to a 6:45 a.m. text that more rockets had been intercepted while she was taking care of her toddlers in the Tel Aviv nursery school where she works. They were fine, she wrote. Then another message, about six hours later, that there was yet another missile attack, again intercepted. She went to the bomb shelter in her apartment. We texted a bit. She was on her way to friends for dinner. I told Al, who was outside, raking leaves. Then I went back to my writing, taking care not to bang the fingers sprouting new ulcers from all this stress.

Later, we spoke by phone. “You sound sad, Mom,” she said, edgy. No need to be concerned, everything is normal here, she insisted. I understood. She was coping on her own, and I needed to back off. Our old dance.

And so it is. My new routine: reading updates several times a day to keep on top of the news and any glimmer of a cease fire, trying my best to concentrate on my work and what’s in front of me, trying not to worry about my very capable 24-year-old who can manage by herself when rockets are flying toward her city, thank you very much, praying for peace, praying for the safety of innocents.

It’s amazing what you can get used to. Like the coming and going of strange, extreme weather. Like learning how to bleach your hand-washed dishes during a 48-hour boil order. Like sprinting to a bomb shelter within the two minute window you have after an enemy rocket launches toward your city, then going about your business. Like accepting that you have no control over what’s happening to someone you love so much, so far away. Like living with the drip-drip-drip of a chronic disease. Amazing.

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 Shot in the Arm

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There are some advantages to seeing your doctor often. Mainly, you get to know each other as real people. And you get to know the support staff—receptionists, nurses, aides—as real people, too. This helps. A lot.

Last week, I had one of my quarterly visits to my rheumatologist at Boston Medical. It was an 11 o’clock appointment, which, by definition, knocked out at least three hours from my workday—including driving, parking, waiting and the appointment itself, plus whatever other tests he might order.

I was doing fine on the Mass Pike until I got to the Pike Extension closer to the city. Suddenly, traffic slowed to a near halt. I spent many years commuting to Boston and know the patterns pretty well, so it was a surprise to hit a jam in late morning. I called the clinic to let them know I was stuck.

“You have a 15-minute window,” said the voice on the other end, someone unknown to me. “After that, we can’t guarantee your appointment.” I had already been driving over an hour. I tried to explain that I had no control over traffic. She just repeated the company line. I hung up, thoroughly annoyed, and decided that no matter when I finally got there, I’d insist that they check with my doctor and fit me in.

I hustled around more slowdowns and construction, finagled my way through local traffic near the hospital and lucked out with a parking spot on the garage’s fourth level. When I reached the Rheumatology Clinic, slightly short of breath, it was just past 11:15. The two receptionists that I know were there, totally fine with my arrival time. And, as is often the case, my doc was running late, anyway. I settled in with my Kindle and started reading.

About a half-hour later, when my rheumatologist arrived in the exam room, I related my travel woes. He said in the future, not to worry. “I often run late,” he admitted. “If everyone has to wait for me, it’s only fair that I would fit you in.” Thank you, thank you. Not only is he a great diagnostician, he’s a mensch.

When we finished reviewing my latest episode of cellulitis (he laughed when I quipped how it inspired my blog post the week before) and the rest of my status report, I asked if I could get my flu shot. As he left the room, I promised to send him images of my finger ulcers using my new iPhone, the next time I changed my dressings (we agreed it was a great way to save time and wound exposure in the office visit).

A few minutes later, one of the nurses appeared at the door carrying a hypodermic needle and an alcohol swab in a foil packet. “Evelyn, it’s so good to see you!” she said with a laugh. “It’s been such a long time. You look great!”

A big woman, she opened her arms and gave me a huge hug. This is the nurse who handles all medication refills and who did battle with our former insurance company to be sure I was able to continue with a very expensive prescription when the insurer didn’t want to cover it without insisting I go through an invasive procedure. She won.

We caught up a bit, and then she gave me the flu shot—just a slight pinch, no pain. We said our goodbyes, I collected my stuff and left the exam room. As I set my next appointment for February, I commiserated with the secretary, who knows me by sight, about how neither of us wanted to think about the winter to come.

Maybe it was the hug, but my arm barely hurt the next day.

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.