Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Hamster Wheel

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Monday morning, 4:18.

Rolling over to adjust my pillow, I hope I can get back to sleep. If I wake anytime between 2:30 and 4:30 a.m., that’s often a futile quest. Tonight is no exception, thanks to a dying battery in our smoke detector that prompts intermittent chirps—undoubtedly the reason I woke in the first place.

With Al’s help, the battery is disconnected and the house, peaceful once again. He falls back to sleep within minutes. But the dark side of my mind is on full alert.

As I lie in bed, I tell myself to stop worrying about a fire, now that the smoke detector is disarmed. This takes a while. I know it’s ridiculous, but it’s the anxiety witching hour.

My mind reviews the past day’s events. I had spent much of Sunday afternoon cooking a dinner that Al and I delivered and shared with friends, a couple we hadn’t seen in a long time. We’d been meaning to visit for months. The husband is a physician, recently returned home after spending many weeks in rehab after a freak accident damaged his spinal chord, leaving him mostly paralyzed from the shoulders, down.

Sharp as ever, he is reflective, soft-spoken, pragmatic. He can maneuver his electric wheelchair with a joystick and use a tablet and computer with adaptive tech tools. He intends to return, eventually, to teaching and practicing medicine. The couple’s courage, humor, strength and resilience are inspiring. We left feeling hopeful.

But as I lie in bed, trying to sleep, all I can think about is, What if?  What if I could no longer take care of myself? What if I could no longer get around on my own? What if that happened to Al? How would we cope?

I try to talk myself off the hamster wheel, but my mind won’t settle. Prayers, meditation, nothing works. I’m just too rattled. I think about how I’ve had the advantage of a slowly progressing chronic disease, which has enabled me to learn gradually how to readjust. Our friends’ lives were undone in an instant. Life is fragile. Change is the only certainty.

Hours later, after I finally get just enough sleep to be able to function, I discover a well-timed blog post in my email about the importance of living each day fully. It’s the obvious answer to the night’s fears.

Terrible things happen to good people who don’t deserve it—accidents, disease, loss, trauma. We can anticipate, maybe prevent, maybe avoid some of the worst; but, ultimately, there is no way to predict the bad stuff. The only way to contend with life’s inevitable risks is to live each day well.

Sunday evening, after our friend’s aide finished feeding him the spinach cheese casserole I’d baked, he turned his head to me and said, “That was wonderful.” Whatever fatigue and hand soreness I’d felt from working in the kitchen evaporated in that instant.

I share this not to brag, but to emphasize the point: The only way to contend with life’s inevitable risks is to live each day well. Sometimes that means just appreciating the fact that you can get up on your own in the morning, even when you haven’t slept soundly. Other times it means cooking a meal for friends who are going through a really rough time, even if your own hands don’t work the way you want them to—or simply savoring the food on your tongue, however you’re able to eat. Ultimately, it means being fully present, in your own life and for others, making the most of each moment, each hour.

I’ll try to remember that, next time I can’t sleep.

Photo Credit: Lewaedd-Q 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.

Defrosting

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Was it really just last week that we emerged from the deep freeze? Monday afternoon, as dusk was settling, I took Ginger for a late walk and didn’t mind her noodling around, sniffing every other lamppost. This would have been unthinkable a week ago, as the ominously dubbed Arctic Vortex clenched half the country in its icy swirl.

Early last week, as temperatures hovered in the single digits, I barely emerged from my home. If Ginger wanted out, I opened and shut the door as quickly as possible, to avoid the frigid air. We switched over from our heat pumps to our oil burner, since the pumps don’t function efficiently below 10 degrees. My skin dried out. My digital ulcers erupted.

Now, following a delightful weekend in the 50s, my fingers are barely beginning to heal again. A new shipment of fabric bandages (I favor Coverlets, only available by mail order, for their softness and flexibility around my sensitive fingertips) arrived on time, thank goodness, because I was running through boxes of 100 far too fast.

With supplies replenished (I order 1,000 bandages at a time), I’m steeling myself for the next arctic onslaught. That’s right, it looks like we’re going back into the meat locker. The National Weather Service’s 14-day outlook predicts lower than normal temperatures for all of us east of the Mississippi. If you live in the other half of the country, you’re in for warmer than seasonal temps.

According to one hyperventilating summary of upcoming weather that I read, we could be dealing with icy cold into the beginning of February. The author quipped that it will be like those winters your grandparents remember.

This thrills me to no end. But then, I remind myself, this is New England, not the upper Midwest, where temperatures dipped to 40 below over the past few weeks. (My sincere condolences. Really. I cannot imagine surviving there.) Our favorite saying here is if you don’t like the weather, just wait a minute.

Time to get ready. I need to get my well-worn sweaters to the dry cleaners, so they are fresh once again. I need to drive my charcoal grey Prius through the car wash, to rid it of a thick coat of road salt that makes it looks as if someone clapped erasers all over a chalkboard (does anyone use these anymore?), before it gets so cold again that the water will freeze the doors shut.

Most importantly, I need to get my mind wrapped around the fact that I cannot do anything to predict or prevent extremely cold weather. It doesn’t really help to read 14-day weather outlooks, because it will all change, anyway. There is no way to know how whatever freezing cold will impact my hands further until it arrives.

A century ago, the great Antarctic explorer Ernest Shackleton kept his men alive for two year when their ship, the Endurance, became ice-locked and eventually sank on an aborted expedition to traverse the continent. One of the keys to his leadership success and their survival was to encourage his men to play—igloo building contests, dog sled races, singing.

Maybe that’s the best way to prepare for the next deep freeze—tune out the weather forecasts and tune in some great music.

Photo Credit: Sharon Mollerus 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.

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.