Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Of Traffic Cones and Lobster Traps

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‘Tis the season for parking space bouts.

After about a foot of snow accumulated across Massachusetts last week, Boston streets were a mess. One guy in Southie clocked an older neighbor after they got into an argument over a parking space. It seems the older guy had paid someone to shovel it out, and then, later that day, the younger guy took the space. The older guy “allegedly” cursed and spit at the younger guy, and the younger guy “allegedly” punched him in the face, landing him in the hospital. The younger guy was charged with assault and battery on someone over 65.

So much for civility. (Okay, kids, let’s remember to keep our hands to ourselves and use words to express our feelings.)

To warn off interlopers, there’s a venerated tradition in these parts of marking your shoveled parking space with traffic cones, old chairs, garbage cans or even lobster traps. Technically, this is only legal in Boston for 48 hours after a snow emergency (not the case last week).

From police reports, it’s unclear whether the older guy staked his space, regardless of parking regulations. Of course, if the younger guy had had any common sense or a drop of consideration, he would have known better than to park in a neatly cleared spot in front of his older neighbor’s home. There were undoubtedly better ways to resolve the dispute. On the other hand, it was a open parking space on a public street.

Which is why I’m intrigued by this story and have taken you on this long digression to make my point—boundaries in relationships are often murky, unless we strive to be clear about our personal limits, intentions and expectations.

Finding an appropriate way to do that without resorting to blows, abusive language or other offensive behavior is an essential life skill. Especially for those of us managing a chronic disease, particularly during the often stressful holiday season, setting clear boundaries to maintain and protect our health is crucial for well-being.

I have gotten better at this as I’ve lived for decades with scleroderma. I try not to yell or scream or manipulate others to get their sympathy when I’m feeling crummy or scared. I strive to set realistic limits and make my needs clear.

To wit, I only attend holiday gatherings that I really want to attend. I have learned to decline requests, politely but assertively, for social commitments that would drain my energy. I am (slowly) learning to ask for help with cooking and scaling down overly elaborate menus that I no longer can prepare (a reverse setting of boundaries with my ego, which still pushes me to be Superwoman). I avoid malls as the holidays approach and do all my gift-buying online. Whatever the time of year, I am coming to accept that I need to set limits with how much I can realistically accomplish in a day or a week in order to maintain my health—physical, mental, emotional and spiritual.

None of this is easy. I still sometimes resent having to set these boundaries when I’d rather be able to do more. But it is what it is. And there are advantages to setting out those virtual traffic cones and lobster traps, reminding myself and clarifying for others that I need to do less, to preserve my health and free up mental and emotional space to appreciate what’s right in front of me.

As I write, it’s drizzling outside my office window. Temperatures hover just above freezing before more cold air blasts through Massachusetts later this week. Not much of a white Christmas for celebrants. But at least there should be plenty of street parking.

Whatever your holiday practice, I hope your festivities are filled with joy, health, well-mannered family gatherings and clear communications about what you’re up for and where you need to draw your own boundaries. Best wishes to all, and be well.

Photo Credit: onesevenone 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.

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.

Let There Be Light

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This time of year, around 7:30 in the morning, the sun paints a tipsy exclamation point on the wall above our bedroom radiator. It glimmers, stretches and slides on a downward slope away from the window, toward the radiator’s far corner, before vanishing within the hour. I welcome the annual arrival of this narrow shaft of light—a reminder that, even as the days are growing far too short, the winter solstice is barely a month away.

Sunbeam_bedroom_11-25-13I hang onto this promise. As soon as we switch the clocks back and it starts getting darker by 5:00 and then 4:30 and now 4:15, I feel as if everything constricts. It takes me nearly a week to get used to the relative time change. Then I start marking time until December 22—the first day of extra sunlight.

My other way of reassuring myself that winter’s heavy darkness will, eventually, lift once again is Hanukkah. The eight-day Jewish festival of lights, Hanukkah is celebrated by lighting one new candle each evening, just after nightfall. The candles are a reminder of miracles—how the Maccabees overthrew Syrian Greek rulers who had desecrated the Temple in Jerusalem, the Temple’s restoration and rededication, and how a single cruise of ceremonial oil burned in the Temple for eight days instead of just one.

Normally, Hanukkah falls midway in December, not far from Christmas, right around the shortest day of the year. With the addition of each new candle in our eight-branch hanukkiah, I feel the light returning.

This year, however, Hanukkah starts the night before Thanksgiving—an anomaly caused by the particulars of the solar-lunar Jewish calendar. This coincidence of holidays won’t occur again for another 70,000 years. That is, assuming humans are still around to mark the passage of time, the earth’s elliptical orbit around the sun and reasons to be grateful.

So what to make of the candlelight when I know the days are still getting shorter for the next few weeks? Delayed gratification? Reassurance that even as the temperatures here in New England have plummeted well below freezing at night, even though it’s still November and not yet January and I’m bundling up in layers and layers to stay warm, that the earth will soon reach its farthest distance from the sun and begin spinning closer once again?

Maybe I should focus on miracles. Gratitude generates its own candlepower. We have a warm house. I have enough warm clothes to deal with the weather and my Raynaud’s. When I switch on a light, electricity flows through wiring into an energy-efficient fluorescent bulb to brighten the room (even if it takes a few minutes). No horrible severe storms, yet, out our way. (Probably shouldn’t mention that one. Don’t want to jinx it.)

Then there’s the annual miracle of that narrow shaft of light each morning in our bedroom, November’s sunny greeting. Yes, it’s cold out, it seems to say. But the world keeps spinning. Gravity holds you firmly to the ground. There will be more sunlight soon. Minute by minute. Second by second. Stay the course.

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.