Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Logistics

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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.

Tender Is the Grass

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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

Jet Lag

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Nothing like travel to broaden your horizons and challenge your equanimity.

Glad to be back home from an excellent business trip to Chicago last week. Great meetings with a wonderful client, much learned, and a fascinating project ahead. In the process, I caught up with old friends not seen in decades, ate some fine meals and visited the magnificent Art Institute of Chicago.

All my preparations for carry-on luggage paid off, and I even lucked out twice with the fast lane TSA check-in, so I didn’t have to remove shoes, pull out my 3-1-1 bag or my computer when I went through security.

But, of course, there were complications. Miraculously, I did not get an infection in any of my finger ulcers. Instead, despite all my best efforts at hand hygiene, I woke up Wednesday morning with conjunctivitis in my right eye. I have not had this since my daughters were young. I couldn’t believe it. Conjunctivitis. Really?

Fortunately, a physician on my client’s leadership team was able to prescribe eye drops, saving me a major hassle and a visit to the ER. My eyes are still healing five days later, but the business trip was saved.

Then came the trip home.

Friday morning, I arrived at O’Hare with plenty of time to eat breakfast, find my gate and relax before departure. Our United Airlines jet arrived 15 minutes before our scheduled Noon departure, so our boarding was slightly delayed, but I wasn’t too concerned, since it was a non-stop flight.

The plane was too small for most people’s carry-on bags, so I and others were given green tags to load out bags onto the plane and receive them at the gate in Boston. However, I failed to realize that I should have taken the perforated stub off the tag, in case I had issues with claiming my bag. I will not make this mistake again.

We settled into our seats. I noticed the leather was worn and wondered about the age of the plane. This proved prescient.

At least 20 minutes passed. The pilot announced that we had an issue with auxiliary power, they were dealing with it, and we’d be on our way shortly. I tried not to worry. A few more minutes passed, and the plane pulled away from the gate.

We began to taxi out to the runway. Then we stopped. For a long time. I heard the engines revving and some odd noises. Then silence. Then the engines revved again. Then silence. Finally the pilot got on the loud speaker once again. This time, he informed us, there was an issue with the heat pump for the left engine. We had to head back to the gate for a mechanical check-up

So back we taxied. Another wait, this time for an open gate and a ground crew to guide us in. “They weren’t expecting us,” the pilot explained. I guess not. My seat mate and I began to crack jokes about what else could go wrong, like a sudden severe thunderstorm. We discovered a shared concern for climate change and a love of Jon Stewart.

At first, the flight crew wanted to keep us on the plane. But the engine problem was apparently more complicated than expected. So after another half hour or so, they decided to let us off the plane while the mechanics took a closer look. “Please stay near the gate for any updates,” the crew told us.

Now, that’s all fine and good, but several problems became immediately apparent. For one thing, I could not take my wonderful carry-on bag off the plane because it was in the cargo section, and I had not taken the stub from my green tag. So there was no option to get on another flight without getting my bag back.

For another, the staff at the gate had no information about alternative flights. “You can go talk to Customer Service,” we were told. Only one issue—we were at Gate B22, at the far end of the United Airlines terminal, and Customer Service was literally about a half-mile walk away.

So, how does one stay at the gate for updates and simultaneously find out about flight alternatives without cloning oneself? (I had tried unsuccessfully to download the United app.) As I pondered this, I decided to make a trip to the ladies room. While turning around to pick up my purse in the stall, I missed a metal shelf sticking out from the wall. Wham! Banged my forehead. It hurt. In fact, it hurt so much that I wondered if I’d just given myself a mild concussion. In the bathroom mirror, I saw a fat goose-egg on my forehead, with a throbbing vein in the middle, though no blood.

At this point, I almost lost it. How was I ever going to get home? What if I really had a concussion? I needed ice. Trying to slow my breathing, I spent a ridiculous amount of money for a chilled bottle of water, which I then pressed to my forehead as I sat at the crowded gate, feeling conspicuous. Though, of course, everyone was too absorbed in their own travel woes or cell phones to notice or care.

Nothing to do but wait it out, I decided. This was going to be a long trip home, but I’d get there, eventually.

Next announcement: There would be an update at 2:00 p.m. Enough time to find Customer Service. Long walk, more waiting. While in line, I recognized a fellow passenger and commiserated. She, it turned out, was on her way to be a bridesmaid in a childhood friend’s wedding in Cambridge at 7:00 p.m. Her dress was in her carry-on, which, like mine, had been green-tagged. As we sorted out our alternatives with the customer service reps, we learned that our flight was going to be switched to a new plane. Hurray! Hope springs eternal.

Back at B22, we soon boarded our new and improved plane. Where it came from, we did not know, but the seats looked newer, a good sign. All our luggage was switched, everyone was accounted for, and we all fastened our seat belts, By now, it was about 2:30 p.m., two-and-a-half hours after we were supposed to leave. A reasonable person would expect to taxi out right away. But there was one hitch: The plane needed fuel.

So we waited some more. I learned a lot about my seat mate’s law firm and some fascinating cases. She was still hoping to meet a friend in Boston and ride out to Northampton for a 7:00 p.m. engagement—but timing was getting pretty tight.

By 3:30 p.m., we were all starting to wonder what was going on. Finally the flight crew got on the speaker once again to give us more unfortunate news: The pilot and co-pilot had timed out and could not fly anymore that day. We were now awaiting assignment of a new flight crew, who would be there “momentarily.”

“Did anyone have a watch?” my seat mate asked.

At last, by 4:00 p.m. we had our new crew, and we pushed away from the gate. Soon we were cruising at 35,000 feet, riding the Jet Stream toward Boston. A-h-h-h-h. Our new pilot, who had a soothing British accent, informed us that our descent to Logan should be quick, though we might hit some turbulence.

Fortunately, he was wrong about the turbulence. But he was also wrong about Logan. Lots of Friday evening air traffic. And so, as the sun slowly sank in the west, our plane began to circle. And circle. And circle. I asked my seat mate if she’d ever seen the classic Twilight Zone episode, “The Odyssey of Flight 33,” in which a jet mysteriously travels back in time, never to return to the right era.

Our United Flight 3791 time warp lasted until 7:00 p.m., when we finally arrived at Logan. I bade my seat mate farewell (her friend had booked a hotel room in Boston and they were going out for a good meal and stiff drinks). While collecting my green-tagged bag, I caught up with the bridesmaid, whose parents were picking her up and bringing her to the wedding, where hors d’oeuvres were just being served, so she was still going to make the ceremony.

Within another 45 minutes, I was in my car, driving west on the Mass Pike. I’d missed rush hour. The highway was dry from rain earlier in the day. My forehead swelling had receded. Hugs and a delayed Shabbat dinner awaited me.

Yes. Very glad to be back home.

Photo Credit: By Maarten Visser from Capelle aan den IJssel, Nederland (srapyard 01  Uploaded by russavia) [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

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

In Transit

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I’m heading to Chicago today, my first long distance business trip since I started my consulting practice just over four years ago. The sun is out, the skies are clear, at least for now, and it looks like I’m going to make it out of Logan before a Nor’easter barrels up the coast this evening.

After all, it is officially spring in New England. Why not more snow?

I’m looking forward to the trip and meeting my clients in person. Wonderful as it is to talk over FaceTime and Skype and GoToMeeting, there is a limit to how much you can pick up from an image on a slice of computer screen. So now we’re going to spend two days digging into content and messaging for a revitalized corporate website. It’s a puzzle that I love to solve, for some great people working to improve the quality of healthcare outcomes.

Four years ago, as I searched for job openings after I had to shut down my marketing department of a dozen-plus years because the college where I worked was in dire financial straits, I had no clue where I was headed. It’s been a long, slow haul, starting up a consultancy, and this is a very sweet watershed moment.

But before I get too comfortable savoring my progress, there is the bigger problem to solve: how finally to join the carry-on luggage club.

Up to now, I have always checked my bags on flights. I am very wary of straining my hands when I travel, lugging a suitcase, even on wheels, lifting, pulling, hoisting. But the last time I flew, my luggage got lost at JFK and took nearly a day to arrive on my doorstep. Plus, there is the added $25 luggage fee, both ways. And the time factor.

So I’m taking the plunge. On Sunday, I spent the afternoon searching for the right 9” x 14” x 22” suitcase that I actually can manage. I researched on the Internet. I tried various bags, testing zippers, pull handles, interior pockets and overall touch and feel.

With luck, I found the perfect suitcase, olive green, with sturdy construction, padded straps, full swivel wheels so I can pull it sideways as well as behind me, and a handle that lifts with the lightest touch of my thumb. All the zipper pulls are either flexible or have comfortable, soft tabs. It was an investment, but for my hands’ well being, worth the money.

Then there was the issue of all the creams and ointments that I need to manage my finger ulcers and skin. This led me to the discovery of GoTubes, which are squishy, washable plastic tubes in 1.5 and 3.0 oz. sizes that meet FAA 3-1-1 standards for carry-on. The tubes have wide mouths, so it’s easy to scoop in the creams and squeeze them out. No waste.

My third find was a soft, large purse with magnetic clasps, so I don’t have to use zippers to remove all the stuff you need at the last minute to get through security clearance. It has a center, flat zippered pocket (only one zipper to deal with) for my laptop and deep side pockets on either side, so I don’t damage my hands when digging around. The straps are soft and wide enough to stay put on my narrow shoulders. All essential criteria for ease of travel and minimal skin strain.

It’s been a scramble to get everything together in time and finish all my work before departing. Last night I was cursing at a pair of black wool crepe trousers, another great find but two inches too long. Nothing like fumbling with a needle and black-on-black thread that you can barely see because your reading glasses need a stronger prescription and your fingers can’t feel the thread as you hem. The evening was saved by my local public radio station, playing an hour of Aretha Franklin’s best hits, because today is her 72nd birthday.

So, happy birthday, Aretha. I’m off to Chicago. Have a great week, all!

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

Hair Wars

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In the Department of Little Nuisances, I find myself in an ongoing battle with stray hairs. This may seem ridiculous to report, but it’s one of the odd things about dealing with personal hygiene that comes along with my experience of scleroderma.

To wit, every day or so, one or more stray hairs drops from my scalp onto my face. I can feel it on my skin, but I have a devil of a time removing it with my fingers. In part, this has to do with the fact that many of my fingertips, at present, are swathed in bandages for digital ulcers, so I can’t actually sense the hair with my fingers. It also has to do with the fact that my fingertip sensitivity has declined over years of Raynaud’s, ulcers and nerve damage, so even with exposed fingers, I can’t always feel the thing.

Very annoying. And frustrating. Especially if the hair has fallen on my lips, but I can’t successfully blow it out of the way. I’ll end up wiping my face with my hands or wrists to get rid of the strand, only to have it stick to my clothes, where I can’t pick it off, either.

On days when I have a sense of humor, the whole bit feels like one of those old-fashioned slapstick comedy routines with fly paper, when no matter which way the actor moves, he gets more and more tangled up in himself. I’m imagining Buster Keaton.

But lately, this is just plain annoying, probably because the air is so dry from cold wintery temperatures and my clothes crackle with static electricity. I try to keep a lint roller handy, but the problem with lint rollers is that it’s hard to peel off the dirty layer—just another reminder of my fingertips’ inadequate pincer capability.

While I’m on a roll, here, the other issue with stray hairs involves my bandages. No matter how good a job I do every day to neatly wrap my fingers in clean dressings, within minutes, some hair from somewhere gets stuck to the edge of adhesive and becomes impossible to remove. Often, I have to resort to scissors to nip off the offending hair strand.

Now, admittedly, when dealing with a disease as complicated as scleroderma, this is a pretty minor issue. It’s not life threatening. It doesn’t keep me from doing what I need to do or love to do each day. One way or another, I manage to groom myself and not walk out of the house with a lot of stray hairs hanging all over the place.

But my hair wars are a constant, niggling reminder that there are a lot of things, even the most simple things, that this disease makes ridiculously complicated.

Our skin, the largest organ in our bodies, is an amazingly facile interface with the surrounding world—protector against infection, moderator of temperature, sensor of stimuli, transmitter of information to our brains. When our skin is damaged by scleroderma, our ways of perceiving and interacting with the world change permanently.

No easy solutions to all this. Patience, persistence, creative problem solving and a sense of humor are the best tools, I’ve found. But some days, I still get really annoyed about it all. And that’s okay, too. Anger has its place in dealing with chronic illness, as long as you don’t take it out on someone else or yourself. So I share this rant with you, dear reader, in hopes that you find a constructive way to vent your own frustrations about picayune problems of disease management. More power to us all.

And if you’re having a bad day, here’s Buster Keaton in The General, to give you a lift!

Video Credit: Internet Archive

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