Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

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.

Ray of Hope

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Nothing like starting the new year with some good news about scleroderma research. In my email box last week, I found this item in the Scleroderma Research Foundation’s monthly eNewsletter (12-30-13):

Researchers Prevent and Reverse Mice Fibrosis in a Mouse Model of Stiff Skin Syndrome; Study Shows Promise for Scleroderma

I read on, heart quickening:

Dr. Hal Dietz and his team at The Johns Hopkins University have made a key discovery that may have broad implications for future scleroderma therapy. In a report in the November 7, 2013, print issue of the premier scientific journal, Nature, the researchers demonstrated that integrin-modulating agents (integrins are molecular receptors that mediate the attachment between a cell and its surroundings) can stop fibrosis in a genetic mouse model of scleroderma-like skin and, more strikingly, that established fibrosis can actually be reversed by the same agents. The Scleroderma Research Foundation has supported the work for the past six years.

In other words, it may be possible, some day in the future, to reverse skin stiffening that is the cursed hallmark of scleroderma.

Here’s a bit more explanation from the same piece:

In the SSS mouse model and, seemingly, in scleroderma, there is a fundamental process that goes awry: cells in the skin lose the ability to attach to the extracellular matrix and to sense their surroundings. Those cells then become activated and stimulate an immune response that causes the surrounding cells to produce excessive amounts of collagen, resulting in fibrotic skin. What’s most exciting is that the Dietz lab discovered a strategy to suppress the abnormal activation of the immune cells. In doing so, they also found that they could not only prevent, but also reverse established skin fibrosis.

You can read the full news release here.

There is so much we still do not know about the causes of scleroderma and potential cures. But the Johns Hopkins study gives real hope that somehow, someday, this disease will have a cure. Maybe not in my lifetime, but, then, who knows?

Both the Scleroderma Research Foundation in San Francisco and the Scleroderma Foundation in Danvers, Massachusetts, raise and distribute millions to find a cure. But they need help. There is just not enough funding through the National Institutes of Health for the research that remains to be done. Scleroderma is simply not up there on the top ten list of diseases-that-affect-enough-people-to-get-more-funding.

So, it’s up to all of us who are affected by this mysterious and disabling disease, friends and loved ones, to help out. Please, even though it’s past December 31, consider making a contribution.

Thank you, and profound thanks to everyone at both Foundations for all you do to help those of us who continue to fight our daily battles, living with scleroderma.

Photo Credit: Kuzeytac (Hopefully Back) 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.

Wake-Up Call

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I tried an experiment this morning: Eat a bowl of oatmeal and craisins without doing anything else—no writing, no reading, no New York Times crossword puzzle, no checking email or Facebook or surfing the web on my iPhone, no planning the week’s menus or my work schedule. Just focus on my breakfast.

This proved a challenge. I only partially succeeded. (As soon as I realized I had the lead for this blog post, of course, I had to take a picture of my cereal bowl and tea and the little meditation bowl that a friend gave Al for the holidays). But for a few minutes, I was able to focus, and noticed several things:

  • I love our kitchen. We bought our house in part because of the skylit space over our kitchen table and the view of the rock garden out back. It’s very soothing.
  • I taste more when I’m paying attention to my food. So often I’m thinking of a million other things when I eat that I’m surprised when I’m finished. This was a nice, warming breakfast.
  • There are annoying new floaters in my right eye that have been bugging me for over a week, now—really, sometimes I think I see a bug and it’s a floater.
  • I have to consciously check myself from going off into my head and starting to compose—this blog, a worry-story about what might go wrong today, a trail of images about my long to-do list.

I will try this breakfast meditation again, perhaps not every morning (hard to break the habits of an inveterate multi-tasker), but at least two mornings a week. It’s part of my ongoing effort to be more present in the moment.

My lack of presence was stunningly obvious one evening last week when I was driving home from Boston with a plan to stop at the supermarket. I turned onto the correct street, but then, instead of going to the store, ended up at the gas station right before the store. My tank was three-quarters full. I had no need for gas. But I didn’t realize my error until I started pumping.

I made it to the market afterward and picked up the correct groceries. But I was a bit shaken by how I’d been just too absorbed in too many concerns taking up too much space in my head to go directly there, in the first place. Maybe it’s aging. Maybe I need more sleep. Maybe it’s just one of those silly things that happens sometimes, when you go on automatic pilot without realizing it.

But it’s also the second time in a week that I’ve made a similar error, intending to do an errand at one store and landing at another, nearby, because I was thinking too much about other things and not paying attention to where I was going.

Conclusion: As 2014 arrives, my big goal for the year is to stay more in the present, less in my head, where anxieties—about health, family, finances, safety, what the future might hold—suck up more energy and effort than they are worth, especially since 95 percent of the stuff I conjure up never happens, anyway.

One of the pitfalls of being a storyteller. Better to pour it all into essays or fiction when I’m safely at my computer and not behind the wheel.

For you, dear reader, I hope you avoid your own wrong turns this coming year. May your 2014 bring you inner peace, good health and healing, fulfillment and prosperity, and breakfasts worth savoring

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.