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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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finger ulcers

To Treat or Not to Treat

Evelyn Herwitz · August 26, 2014 · 4 Comments

Ah, the gift of late August heat in New England. After a week that felt more like September, I’m glad to be back in sandals, at least for the next few days.

I’m also grateful for warmer weather that helps my ulcers to heal. A week ago Sunday, I awoke with pain in my left thumb that I hoped was just an inflammation. The pad of this finger has an intransigent spot of abnormal skin that occasionally gets thick and painful and usually responds well to careful debridement. But not this time.

My thumb was achey as I commenced a six-hour round-trip drive to bring Emily home from her summer job at her college alma mater, and the discomfort was just barely manageable with over-the-counter painkillers that wouldn’t make me drowsy. I suspected an infection. But when I finally got home and took a closer look, I didn’t see any obvious symptoms. No foul odor. No oozing puss. No extreme redness. Maybe topical antibiotics, just to be safe, would do the trick overnight?

I hate starting oral antibiotics, even as I’m grateful always to have some available at home, thanks to a team of physicians who know me well enough to trust my judgment and my follow-up reporting. This is a privilege of living in a wealthy Western country with good health care (despite all the political wrangling). I am very much aware of the risks of unnecessarily treating with antibiotics—the evolution of antibiotic-resistant strains of bacteria—and that threat frightens me, since I’m so susceptible to infections.

So, I waited overnight to see if a more modest approach would work. It did not. Too early on Monday morning, I was roused by severe pain in my thumb. It had swollen just enough to feel trapped in too-snug skin. Basically, it felt like my thumb was stuck in a car door. That, or the stabbing sensation of an intermittent electric shock or an ice pick are the sure signs of a bacterial infection in one of my fingers.

Time to double-up on antibiotics—one pill for the morning, and one for the dose I should have taken the night before. Then I cut a Vicodin in half and swallowed that, too. I also hate, absolutely hate narcotic pain meds, because they make me feel like a space cadet, but sometimes there is just no other way to deal.

It took me a good 48 hours on the antibiotics to dispense with the Vicodin, and another day for the now obvious infection to begin to clear. Today, a week later, my thumb is healing well, along with my other three digital ulcers of the moment, which always clear up when I’m on oral antibiotics.

Thank goodness. But will it always be so?

In his 8-25-14 financial column in The New Yorker, James Surowiecki writes a clear and compelling analysis of why Big Pharma doesn’t invest in new drugs that don’t make a profit.

This is relevant in light of the Ebola crisis in West Africa—“Diseases that mostly affect poor people in poor countries aren’t a research priority, because it’s unlikely that those markets will ever produce a decent return” on R&D, writes Surowiecki—as well as the reason why there is so little research into new antibiotics to treat resistant strains of bacteria.

The reason for the lack of investment in discovering better antibiotics, Surowiecki explains, isn’t for lack of awareness of future need. It’s “the business model. If a drug company did invent a powerful new antibiotic, we wouldn’t want it to be widely prescribed, because the goal would be to delay resistance.” With the prospect of limited sales, Big Pharma doesn’t want to make the investment.

What’s the solution? Surowiecki floats the idea of prizes for new drugs that have a public health benefit. The idea isn’t new: government-funded incentives for innovative solutions have been used for centuries and have become common in recent decades. They are only awarded if the idea works. They help to correct market forces that work to the detriment of the public good.

So why haven’t we started down this path, already? Huge up-front costs. Surowiecki notes that “a recent report commissioned by the F.D.A. estimated that it would cost a billion dollars to get a great new antibiotic, factoring in tax credits.”

To put this in perspective, that’s equivalent to the cost of about 200 Predator Drones.

I hope and pray, before the inevitable crisis hits, that our government can stop the political infighting long enough to get its priorities straight and make a serious investment in the future of public health, both here and abroad.

God-willing, this will happen long before that bottle of antibiotics in my medicine drawer no longer provides relatively quick treatment and relief from an infection that could all too easily get out of hand.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: antibiotics, finger ulcers, managing chronic disease

Long Shadows

Evelyn Herwitz · July 1, 2014 · 2 Comments

At last. Sitting on the beach, in the sun, watching the waves roll in. I’m wearing shorts and a tank top, lots of SPF 50 sunscreen to avoid getting a rash on my photo-sensitive skin. I won’t be swimming, because the Atlantic is far too cold this early in the season, and the waters off Block Island, R.I., are chilly, and I have ulcers on my fingers that I can’t risk immersing.

But it feels good to be here. Even if the breeze is stiff and I have to pull on extra layers as Sunday afternoon deepens. Even if I can’t swim like I used to as a kid, jumping over the waves and body surfing until I turned blue and my teeth wouldn’t stop chattering.

So I sit in my beach chair and read a novel, do a little of the Sunday New York Times crossword, watch Al swim and dive in the surf. I take a nap and work on my tan (have to be careful with this, not overdo, given skin sensitivity). I wonder why the people next to us on the beach, with very loud voices, don’t realize that everyone within 20 feet, at least, can hear every word of their conversation, including how one of the men and two of his friends each won $500 at a craps table in Montreal and other fascinating details (for them, not for the rest of us).

Fortunately, I’m able to screen out their conversation when I read. And no one really seems to mind. On the beach, on a sunny Sunday, it’s live and let live.

As shadows elongate, we walk up the shore, collecting pebbles and even a few bits of sea glass—unusual for this beach, which is usually picked clean. I sit on a large rock as Al explores farther, my arms wrapped around knees to stay warm in the cool breeze, and watch a dad and his three daughters, all in wet suits, play catch with a pink-and-yellow rubber ball in the surf.

On our walk back, we pass a black-and-white mutt worrying a piece of driftwood, barking at its owners as they play in the water, then barking at the driftwood, then shoving the driftwood around with its nose and barking at it again. Someone has made a terraced sandcastle with smooth, rectangular walls; another has created a castle of sand globs and drizzles.

We eat dinner al fresco, across the road from sand dunes, deep turquoise ocean just visible beyond. We stop for an ice cream cone for Al and poke around the little shops. I find a scarf the color of sunset. We check on the Red Sox v Yankees score as the ferry pulls away from the dock for the hour-long trip back to shore. Our boys are ahead.

The day is a welcome escape from work and responsibility and so much sad and disturbing news in the world. On Monday afternoon, headlines announce the tragic murder of the three Israeli teens who were kidnapped more than two weeks ago, hitching home from school, and I sit at my computer screen and cannot concentrate on my writing. Our sunny, relaxing beach trip seems far away. I grieve for the parents and pray that cooler heads prevail, on both sides of this intractable conflict that could erupt at any moment. No good will come of more bloodshed. I pray that my eldest, Mindi, stays safe as she spends the remainder of her vacation in Tel Aviv.

If only we could all just go to the beach and, together, enjoy the waves, and the sun and a long, relaxing stroll as shadows grow long. Naive, I know. If only.

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: finger ulcers, managing chronic disease, photosensitive skin, Raynaud's

Violet Thread

Evelyn Herwitz · June 24, 2014 · Leave a Comment

Just three bandaged fingers. That’s all. Pretty good for June, before the weather gets really hot. And only one fingertip has a persistent ulcer that’s taken months to begin closing. The other two, my thumbs, need extra protection for sensitive skin that I hope will heal as temperatures finally rise here in New England.

I’m sure I’ll be griping along with the rest of my neighbors when we hit the inevitable mid-summer muggy heat wave. But for now, the prospect of 80 degree temps this week sounds grand.

My gums are also healing from last month’s emergency tooth extraction, the tissues filling in over the bone graft where my resorbing, sore molar once resided. In a couple more months, it will be time for the implant. By Thanksgiving, I hope to have all my teeth again. And, hopefully, sometime between now and then, our dental insurance plan will find the paperwork from the periodontist’s office that justifies the bone graft as preparation for an implant, instead of informing us that it was not “dentally necessary” and refusing to send a reimbursement.

I’ve been sewing, too, mending clothes for my eldest, Mindi, before she left last week for Israel. I patched a favorite pair of jeans, even found matching fabric from a similar pair that belonged to her sister, after Em trimmed hers for summer cut-offs. With a few daubs of superglue, I mended a broken purse-strap. Next on the list: restitching a waistband. I just need to pick up the right shade of violet thread, which gives me a good excuse to go to the fabric store and peruse the sewing catalogues.

As I write on Sunday morning, Al is out back, clearing brush, weeding, puttering in the yard. I spoke to our arborist on Friday about tree maintenance, and we now have a pruning estimate for the overgrown Bradford pear, Japanese maple, Norway maple and yews, plus an environmentally friendly solution for the plant bugs (yup, that’s what they’re called) that have infested our boxwood hedges.

Halfway across the world, as Mindi co-leads a group on a whirlwind Israel tour, things are not as calm. A few days before she left, three Israeli teens were kidnapped by terrorists while hiking in the West Bank; tensions are mounting as Israeli forces search for the missing boys, arresting hundreds of Palestinian suspects. The leader of the Palestinian Authority has condemned the kidnappings and vowed cooperation. But retaliatory rockets were fired from Gaza into southern Israel over the weekend, not far from where her tour group was supposed to spend Shabbat, and intercepted. A few Palestinians have died; the IDF asserts self-defense. This will get worse before it gets resolved.

Mindi comes back to the States in early July. Meanwhile, Iraq is erupting in bloody sectarian civil war. I asked a friend who is a veteran of Iraq, Afghanistan and Vietnam for his assessment. The Iraqi government is totally corrupt, he says. Not even their own troops want to fight for them. I watch news reports and feel sorrow for the innocent citizens trapped in the middle and grateful that our country, for all its serious problems, is relatively peaceful and secure.

I am trying not to let all of this news make me crazy while Mindi is so near the action. We’ve been through tense times before when she lived in Tel Aviv during the rocket attacks in 2012. Life is never without risks. I remind myself that the odds of serious injury or worse are greater whenever I drive on the Mass Pike than when my adventurous daughter travels abroad.

And so, I focus on repairing what’s within my control. I tend my finger ulcers. I follow my periodontist’s directions to care for my healing gums. I plan a pruning schedule for overgrown trees. And I pull out my sewing machine and go to the fabric store for violet thread.

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.

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, finger ulcers, mindfulness, resilience, stress management

Logistics

Evelyn Herwitz · May 6, 2014 · Leave a Comment

12:15, Thursday morning. I should be asleep by now. I have to rise at 5:10 to get ready and leave the house by 7:00, to drive to New Haven in time to catch the 9:28, so I can arrive in Manhattan in time for an afternoon of meetings, starting at Noon.

This is an experiment. I want to see if I can manage a one-day trip to NYC on business without wearing myself out. But, of course, I can’t sleep, too preoccupied with whether I’ve selected the right outfit for the predicted mix of rain and possible thunderstorms and 70-degree temperatures. If I dress too warmly to ward off dampness, I’ll end up sweating and getting chilled. And if I wear something too lightweight, I’ll freeze, especially if the office has turned on the AC.

When I wake after a meager four hours of sleep, I review the fiber content of the outfit I’ve chosen—a white sweater top that is a mix of silk and cotton, an ivory crocheted cotton cardigan and black wool crepe pants—okay, I’m good. Comfortable and professional, made from natural fibers that won’t trap perspiration, with loose layers to allow plenty of air circulation.

Next step, hands. The night before, I cut all my bandages and dressings to be sure I could take care of my finger ulcers in five minutes instead of the usual twenty. It’s absolutely essential to cover every possible skin crack when I travel, but if I feel pressured by time, I can get sloppy and have to redo the dressings. With everything ready, I relax and neatly prepare my fingers for the long day ahead.

As I do my stretching exercises and get dressed, I rethink my plan for my laptop and decide to shift it from a carrying case to the center zipped compartment of my large purse. The laptop is lightweight, and I don’t want to fumble with extra stuff to carry when I make purchases. I test the arrangement. The purse is roomy enough for easy wallet retrieval, even with the laptop, and remains securely over my shoulder. Check.

After a breakfast of scrambled eggs and toast—need to be sure I have enough protein in my system to stay awake for the two-hour drive ahead—I head out the door. Only 10 minutes behind schedule. Okay so far.

That is, until it starts raining. Not just raining, pouring. And there’s fog, too. I pull over at a rest stop on the Mass Pike to check traffic around Hartford on my cell phone. I have to drive around the city during rush hour on my way to New Haven. There are two ways to go, and I select the one with the least congestion.

This plan works until I get closer to Hartford and find myself crawling at 11 mph on Route 84. Should have left earlier, but no use getting upset now. Nothing to do but sit out the traffic jam. I decide to catch the next train, if need be, and let my clients know I’ll be a half-hour late. I am not going to run through the station and risk getting winded from what my physicians think is exercise-induced pulmonary hypertension. I had a recent, unnerving episode, and I don’t want to push it.

Once the traffic eases and I get onto 91S, I drive as fast as I can without exceeding the speed limit by too wide a margin. More traffic back-up on the exit ramp to New Haven’s Union Station, but, miraculously, I find a space in the parking garage just one level up. There’s a covered walkway to the station, and the restroom is right down the hall, conveniently located for a quick pit stop. Time, 9:12.

Okay, now I just have to buy my ticket and find the train. Only a few people in line at the counter. Ticket in wallet, I walk briskly to the gate, up a long flight of stairs. The train is waiting. Plenty of seats, still. I settle down, take off my raincoat and catch my breath. Made it! Seven minutes later, we pull away from the station.

By the time we reach Grand Central, all traces of rain are gone. I switch to sunglasses as I climb out of the Union Square subway station. People stroll and hustle in shirtsleeves, shorts, flip-flops. Pink crabapples abound. Somewhere, someone is making a loud May Day speech about workers’ rights. Delivery trucks battle for curbside parking. A siren wails down another block. The air smells of car exhaust and felafel and fresh doughnuts. I unzip my raincoat, slip my collapsable umbrella into my purse and head toward West 17th Street. It’s going to be a good day.

Photo Credit: JefferyTurner 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: finger ulcers, hands, Raynaud's, resilience, travel

Tender Is the Grass

Evelyn Herwitz · April 8, 2014 · Leave a Comment

Is it possible? Has spring finally arrived? After this bitter cold, seemingly endless winter, it’s hard to trust. But the signs are visible.

Sunday. Sunny, 55 degrees. The Red Sox opened at Fenway on Friday (Never mind that the Brewers swept the three-game weekend series—we’re just getting started, and Ortiz is still wearing a Boston uniform.)

Crocus_4-6-14As I walked Ginger round the block Sunday afternoon, I noticed tender green grass shoots peeping through thatch. Purple and fuchsia crocuses yawned on the sunny side of the street. Even in our shaded back yard, one lavender bud had valiantly pushed its way toward light.

At last. It’s the second week of April, and the forsythias are not yet aglow. But the sun is brighter, the sky, bluer, and only about a foot remains of the last, stubborn, dirty pile of snow out back.

It’s the season of promise and not-quite-there-yet.

Neighbors walk by in jackets and sunglasses. Around the corner, kids’ bikes litter a front lawn. On my route with Ginger, I reluctantly wear my mid-weight winter coat, insulated gloves and wool hat. It may be well above freezing, but 55 is still chilly for me and my Raynaud’s. My finger ulcers are finicky in the spring and need protection and mindful nursing. It will have to get into the mid-60’s before I can switch to a shorter wool coat, high 60’s or even low 70’s before I can send my winter sweaters to the dry cleaner and go without gloves.

I’m also still tending my light-sensitive eyes in the wake of complications from conjunctivitis. The infection of two weeks ago has cleared, but an allergic reaction to the eye drops left me with mild corneal abrasions in both eyes that required more medication. I can now look at my computer screen without discomfort, but reading and sunlight remain tiring. It is just never simple with scleroderma and, in my case, the added complication of Sjogren’s, which renders my eyes, nose and mouth too dry to begin with.

I’ve been extremely frustrated about this over the past week. Writing and reading are such a huge part of my work and daily pleasures that my struggles with vision have been both aggravating and frightening. Why did something as mundane as conjunctivitis have to turn into such an ordeal? What if my vision doesn’t return to normal? How long will this last? Do I always have to get an infection of one sort or another when I travel?

For all these reasons, Sunday’s promise was most appreciated. Those bright green sprigs of grass, the joyful crocus blooms, the barely visible buds on tree branches—just knowing that baseball bats are smacking over home plate once again, whoever wins—all remind me that winter really does end, even in New England.

I will retire my down coats and wool sweaters and don rayon and cotton once again. The days will continue to get warmer, on average, and longer. Leaves will unfurl and shade the street. My eyes will fully heal.

And, if we’re really lucky, the Sox will bring home another World Series championship this season. Welcome back, spring.

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

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Filed Under: Body, Mind, Sight, Touch Tagged With: conjunctivits, finger ulcers, managing chronic disease, Raynaud's, resilience, Sjogren's syndrome

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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