Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

House Calls

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I spent a lot of time in my car last week, driving in heavy traffic and bad weather as winter storms swept across New England. Twice in one afternoon, I found myself creeping along at 20 mph or less, caught behind a phalanx of snow plows spraying road salt—annoying, but, I reminded myself, not a bad place to be with a mix of slush and snow falling from the sky.

Nothing to do but go with the slow flow and listen to the radio, monitoring traffic reports and the news. One item caught my attention—a new smartphone app called Doctor on Demand.

Available in 15 states, this app enables you to video chat with a licensed physician for $40 a call and get a prescription filled at a nearby pharmacy. And it’s not the first such app to emerge in the expanding market for instant medical diagnoses, a whole new twist on the notion of doctors who make house calls.

Convenient, certainly. For those who are rarely sick, suffering from the occasional cough, back pain or skin rash—the most common ailments treated by internists and pediatricians, according the Centers for Disease Control—it could be a real timesaver for patients and physicians, alike.

Of course, you have to be willing to risk sharing your intimate medical history over the Internet superhighway. Given what we now know about the NSA’s data collection vortex, I wouldn’t trust any secure server with that kind of personal information.

Nope, much as I hate spending hours in waiting rooms, I’ll take a personal, longterm relationship with each of my many docs, any day, over a virtual MD in the palm of my hand.

When I was growing up, doctors made real house calls as a routine part of their practice. Ours was an old fashioned GP named Dr. Grunberger, a Hungarian who spoke English with a thick accent, enumerated every dire diagnosis aloud as he sorted the possibilities, and got into heated arguments with my Teutonic mother, who had once aspired to be a physician and knew just enough medical terminology to sound intimidating. (She once diagnosed a red patch on my lip as a “contact dermatitis.” “What’s that?” I asked, aggravated and worried. “It’s a rash,” she answered, smugly. Well, why didn’t you just say that? I grumbled under my breath.)

I always awaited Dr. Grunberger’s visits to my feverish bedside with trepidation. He carried a huge, worn, black leather doctor’s bag, from which emerged his stethoscope (always cold), wide wooden tongue depressors (I have a strong gag reflex), and dreaded hypodermic needles. He smelled of alcohol wipes and spoke in rapid-fire bursts, and I could never understand what he was explaining to my mom.

For her, whatever their conflicts, it must have been wonderful to have him come to our house, rather than bundle up a sick child, drive to his office and sit with me in the waiting room. His first-hand knowledge of our home life also enabled him to make some astute medical decisions. When I was about nine years old, suffering from a fever and lower abdominal pain, he determined during a house call that my mother could monitor my condition well enough to avoid an unnecessary appendectomy.

I was very disappointed. My dad had bought me a cream-colored Christian Dior nightgown and matching robe with brown lace trim and apricot velvet bows for my anticipated stay in the hospital, and Madeline was one of my favorite books. I got to keep the fancy bedclothes and my appendix—but sorely missed what I thought would be the wonderful drama and doting family attention of an operation and hospital stay.

Dr. Grunberger was correct, of course. His assessment was based on a long-term relationship plus years of experience, training and observation. He had felt my sore belly with his fingertips. He knew my mother well, and even though they argued about diagnoses and treatments, trusted her to take appropriate steps if my condition worsened.

I no longer have the benefit of a doctor who makes house calls, but I am blessed by the next best kind of medical care: I have known my internist for more than three decades, my local rheumatologist for nearly as long. My rheumatologist at Boston Medical Center has been treating my scleroderma for at least 15 years, maybe more. I’ve lost track. And I have longterm, personal relationships with a raft of other specialists.

I may have to wait far too long for medical appointments. But once these gifted physicians enter the exam room, they each take as much time as I need to share my latest symptoms, as well as what’s going on in my life. They know me well enough not to push me into treatments that I feel are too aggressive, as well as when to persuade me to try something new and beneficial. When I’m depressed about complications, they sympathize and encourage. And when I’ve cried, they’ve held my hand or given a needed hug.

You can’t get that kind of care from an app.

Photo Credit: Dorothea Lang, “The camp nurse introduces doctor to mother of sick baby. Merrill, Klamath County, Oregon. FSA (Farm Security Administration) camp unit,” 1939, Library of Congress.

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.

Tipping Point

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I got sick last week—not horrible, serious, life-threatening, needing-hospitalization sick. Just plain old rotten cold virus sick. But it was definitely not fun.

It started as swelling in my throat and chills on Monday, moved into achey joints by Tuesday, evolved into congestion on Wednesday, and by Thursday I was coughing and battling a very runny, stuffy nose. Lousy nights with poor sleep. Mornings hacking my guts out. On Friday, I forced myself out of the house to do a few important errands (like finally getting the snow tires on my car before the snow arrived Sunday night) and then struggled to work at my desk for the rest of the afternoon.

Now, none of this is out of the ordinary for a cold. It’s just that I feel it worse than I used to, mainly because my scleroderma exacerbates all the symptoms. Chills are really chilly. At one point early on, my hands were so numb I couldn’t pick up anything, and the only remedy was a hot shower. Aches are really achey. My left arm felt like I’d just had a tetanus shot.

Figuring out what to do about this is always a challenge, because decongestants can set off my Raynaud’s, too, and make my nose freeze. So I often rely on spray decongestant, but that has a boomerang effect if I overuse it, and makes the swelling worse.

So, feeling pretty desperate on Friday to breathe and relieve the muscle aches from too much coughing, I decided to try an over-the-counter liquid cold remedy. To my amazement, it actually worked without making me numb. Thank goodness! That and some adhesive strips to keep my very narrow nasal passages open, plus limited use of nasal spray, enabled me to get some sleep Friday night.

On Saturday, I stayed home to get more rest. Ironically, while reading a New Yorker article about a new treatment for insomnia, I passed out on the couch for another four hours. (Really, the article was interesting!)

When I woke up, miracle of miracles—I felt like myself again. It was as if that extra rest enabled all the working parts of my immune system to finally get the combination and overcome the virus that had been plaguing me for a week. I’m sure it actually took six days of microscopic activity to reach the tipping point from sick to well, but given how poorly I’d felt just 24 hours earlier, it sure felt like the extra sleep was the golden key.

A few days later, I’m still hoarse, and my energy is not 100 percent, yet. But I’m close, thank goodness. I’ll be even more vigilant using anti-bacterial gel every time I touch a debit card keypad and signing credit card slips with my own pen during cold and flu season. At least, that will give me the illusion of some control—and maybe some real protection against getting sick again, soon.

Meanwhile, it’s great to breathe again.

Image Credit: Illustration from Johann Remmelin, Pinax Microcosmographicus, (Amsterdam: Ex typographia Pauli Matthiae . . .; Voor Justus Danckersz, 1667); U.S. Library of Medicine, NIH; courtesy www.publicdomainreview.org.

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.

Biker’s Paradise

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In three weeks, it will officially be winter. But January temps arrived here last week, way too cold, too soon. Mornings and evenings in the teens, bitter windchill, the works—only the snow hasn’t arrived, yet.

All of this made me realize that I need to solve a big problem I’ve been ignoring—I need to replace my very worn-out, favorite, red-suede, insulated winter gloves. The holes in the right hand can’t be mended and are growing bigger with each wearing.

Now, for most folks, this is not a big deal. Especially at this time of year, stores are well-stocked with rainbow displays of gloves of all different materials, styles and warmth. But my fingers are much shorter than an average size 7 glove, what I’d wear if I had normal hands. I don’t.

Due to complications with severe Raynaud’s and my scleroderma, my fingertips have all resorbed to stubby nubs. The longest finger on my right hand is only 2¼ inches long. I often have several fingertips bandaged to protect my ulcers. So normal gloves always have about an inch of extra fabric at the top that flops around and makes it hard to pick up things. Also, the fingers are often too narrow to accommodate my bandages. Children’s gloves are too tight.

I lucked out with those red gloves several years ago at a random fundraiser trunk sale. They have Thinsulate lining and roomy fingers that are shorter than standard gloves. No tag. No way to trace their origins.

So, replacing them called for some creative problem solving. I turned to the Internet and googled “women’s gloves short fingers.” At first, all I found were gloves for cyclists without fingertips. I kept looking. There were sites for outdoor adventurers, but those gloves cost a fortune. Custom-made gloves were out of the question.

Then I discovered sites for bikers. A goldmine. It would never have occurred to me, but, of course, bikers need warm gloves for cold weather—sturdy, insulated, flexible leather gloves for gripping motorcycle handles.

The idea of walking into a biker shop, however, felt a bit intimidating. I’m sure I’m guilty of stereotyping, but I’m about as far from a biker as you can get. So I did some more online search and found a great biker retail store near Boston. They sell very affordable leather gloves in a range of sizes, with wide fingers that look slightly curved. Perfect.

I could have emailed, but I decided to call. A pleasant woman named Melanie answered. I explained my dilemma, that I have very short fingers and wasn’t sure what size to order.

“Oh,” she said, “you’re just like me! I have short fingers, too. I hadn’t thought about gloves, though, because I put my bike away for the winter.”

I confessed I wasn’t a biker and described the details of my hand issues.

“You’ve come to the right place,” she said. “Biker gloves come in all different sizes, for a great price.” This all made perfect sense. A real niche market.

She offered to go try on some gloves and report back. We determined that her tallest finger is about a half-inch longer than mine. A few minutes later, Melanie returned to the phone.

“I’m trying on this pair of smalls, and they are quite comfortable on me,” she said. “You might even try the extra-smalls.”

“Are you sure they’ll be wide enough across the palm?”

“I have very square palms,” she said. “Where’s that measuring tape?” She determined that her palm was 4½ inches across to the outside of her thumb joint.

“Okay, let me check,” I said. We were both laughing at this point, comparing these intimate details of our physiognomy. My measurement was about a half-inch shorter. The extra-small sounded like the right size. She assured me that the style runs to a triple-extra-small and likewise in the other direction, and that they take returns and exchanges.

I thanked her for her help and placed my order online. The gloves should arrive in a few days. If they don’t fit, I’ll drive to the store in my Prius, meet Melanie and find the right pair. I may be an unusual customer, but then, hands are hands. And it’s an adventure. Who would have thought my scleroderma would land me in a biker’s paradise?

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.

Milestone

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It’s maybe seven years ago, February, midday. The pea-soup-green classroom, a science lab of some sort, is packed with second year medical students. They fill every seat behind the rows of black benches and crowd onto window ledges in the back.

I sit before them on a metal stool, dressed in my favorite red wool pencil skirt, a black and beige tweed jacket, black cashmere sweater and rainbow scarf, stockings, black pumps. I want to look my best, not like a suffering patient with scleroderma.

I have come here, to Boston Medical School, to help would-be physicians learn about this rare and complicated disease, at the request of my rheumatologist’s research fellow. I’ve helped out several years in a row, so I know the drill: The fellow asks questions and I describe my symptoms. Then the students have to figure out which auto-immune disease I’m describing—rheumatoid arthritis, lupus or scleroderma.

I summarize the disease’s onset—fatigue, puffy fingers, fleeting joint pain in my late ‘20s; pleurisy, thickened skin that migrated from my fingers to the backs of my hands halfway up my forearms in my early ‘30s, facial skin tightening that made it uncomfortable to blink, problems swallowing. I tick off more details. Severe Raynaud’s. Calcium deposits, digital ulcers and infections. Friction rubs in my wrists. A miscarriage at 6 weeks. Pre-eclampsia and premature birth of my younger daughter.

The skin tightening, of course, is the giveaway, and several suggest the correct diagnosis of scleroderma—to be specific, limited systemic sclerosis, explains the fellow. Then it’s time for the med students to ask their own questions.

I am always surprised by how tentative they are. I’m one of the first real patients they have met in their medical training, and they stick to the technical details, nothing really personal. Do I get short of breath when I go up stairs? (Sometimes.) What triggers numbness in my hands? (Cold weather, but also a change in relative temperature, like going from 80 degrees outside to 72 degrees inside with air conditioning.) Have I experienced any skin changes on my torso? (No. That’s a sign of diffuse systemic sclerosis, which tends to be much more severe. My skin has actually loosened somewhat with time, thanks to medications, excellent health care and good luck.)

Our session flies by. At the end, I let the students feel the backs of my hands. Their fingers flutter over my skin like butterflies. They are most appreciative. I leave with a sense of accomplishment, that scleroderma will no longer be just another diagnosis to memorize from their textbooks, but something tangible. Maybe, just maybe, after they’ve completed their training, one of these young physicians will be able to diagnose this disease early on and save her patient at least some irreversible harm.

I am also exhausted. There is something about sitting in front of that group, good as it is to teach, that makes me feel like a bug under a microscope. The discussion among the students and the fellow, as they explore my symptoms, is both theoretical and specific. I am reminded of all the scary things that could go wrong—kidney failure, interstitial lung disease, pulmonary hypertension, GI problems, heart issues, on and on.

I understand this discussion—it’s a necessary piece of the students’ medical education. But it depresses and angers me, too. I am not a litany of symptoms and would-be symptoms. I’m a whole woman who has been living with this disease for far too long.

That’s why I dress up. I want to make it clear to the students that I am much more than my scleroderma. Yes, it affects every aspect of my life. But it does not define me.

This is my 100th blog post. Though I haven’t taught second year med students about scleroderma in a long time, I have chosen to share my life with this disease in the blogosphere for some of the same reasons. I want to educate—about not only what it means to live with scleroderma, but also what it means to live with chronic illness.

The more I have written over nearly two years, the more I find myself wanting to share what I’m learning about living fully. We are a society obsessed with categorizing, labeling, one-upping. Health, wealth and beauty guarantee high social status. Those qualities are compromised by chronic disease, especially scleroderma.

The older I get, the longer I beat the odds on this disease, the less I care about those status markers. What I value is my ability to make the most of each God-given day, to nurture loving relationships, to put my talents to good use. And that’s what I’ll be writing about more in the weeks and months ahead.

To all of you who have subscribed to this blog since Post #1 and stayed with me, my profound thanks for your support and continuing enthusiasm. To those who have joined along the way, I’m so glad you’re here.

Photo Credit: A.M. Kuchling 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.

Under Wraps

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Ah, yes. It’s that time of year when it takes 20 minutes to bundle up and head out the door. Maybe not for everyone, but most certainly for me—all those snaps, zippers and the inevitable struggle to grasp the wrists of my sweater so the sleeves don’t bunch up inside my coat.

SnowsuitI’m already into my full-length down Eddie Bauer, gloves, a wool beret and scarf, sometimes even leg warmers. All this, of course, over two sweaters, warm pants and fleece wrist warmers—my go-to outfit for working at home, writing at my computer, which inevitably makes me cold even with the heat on, because I’m sitting still for so long.

Even if all those layers can sometimes feel like a mummy’s wrap, however, it’s nothing compared to the bulk I used to wear as a kid.

Remember snow pants? With skirts? In my elementary school, in the ‘60s, girls couldn’t wear pants to school. I had this water-resistant pair of red snow pants, with suspenders, that my mom would insist on me wearing over my plaid wool kilts to school—that, plus tights, of course, red rubber overshoe boots (the kind with the little elastic loop that you slipped over the rubber button to supposedly keep out the snow), a matching red parka with a hood and red wool mittens.

Those snow pants, practical as they were, made my skirt bunch up at the crotch. I hated wearing them to school. I would waddle out of the house to the bus stop. Getting dressed for recess was a big, long process—probably harder for the teacher than for us kids.

Playing in the snow at home was another matter. I loved to make snow men and snow angels in our front yard, and the snow pants were tolerable for those activities, mainly because I wore pants underneath.

For fall, I had a tan wool duffle coat with toggle buttons. No fancy light-weight, super breathable, heat-retaining fabrics back then. Most of the time, wool was sufficient.

Once, however, on a chilly late fall day, out on the playground, the wind kicked up. A couple of my little girlfriends and I huddled together and complained to the teacher in charge. “You’re just a bunch of sugar plums,” she teased. “It’s a beautiful, sunny day. Go and play.”

To which we responded by walking arm-in-arm within her earshot and chanting, “It’s cold, it’s freezing, it’s terrible!” We’d have been better off running around, but we had fun being miserable. Then we played hopscotch until the bell rang.

Some 50-plus years later, I’m still of both minds about the weather. There’s that part of me who absolutely hates the cold here in New England, all the layers and the numbness in my fingers and transitioning in and out of cold when I venture out for errands or appointments.

But there’s the other side, as well, who loves the four seasons, even snow, and views the challenge of dressing for my severe Raynaud’s as one more game to play. I may gripe, but ultimately, it’s all about finding the right clothes, giving myself enough time to get dressed and mastering layers. It also helps to have warm clothes that are comfortable and make me feel and look my best.

Certainly not snow pants.

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.