Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Reprieve

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The windows are open and James Brown belts “I Feel Good” on our local NPR station as I write at the dining room table this Monday evening. Earlier today, I took a walk without a coat, without a jacket, without gloves or a hat. All the trees on our street are leafing, the magnolias are in full bloom, joined by forsythias and rhododendrons, tulips and violets.

NYC SkylineIt actually hit 79 this afternoon when I was out running errands, although my Prius recorded the outdoor temp as 64. I think it was as shocked as I, that it finally looks and feels like spring.

Even better, I’m down to only four bandages on my fingers. Still on oral antibiotics to ensure that one very persistent infected ulcer continues to recede, oh so slowly. Both thumbs will also take more time to heal and a chronic spot on the inside of my right ring finger has acted up. But compared to where I was just a month ago, it feels like my hands are nearly bare.

This is all the more amazing, given that I did a lot of traveling last week. Business took me to Manhattan for an overnight and then a train ride back to Boston for another overnight, to conserve my energy for a writer’s conference the following day. I schlepped my wheeling carry-on bag around Midtown and Chelsea, down and up subway stairs (why are there so few escalators and elevators?), over curbs and streets and sidewalks being torn up and repaired, in and out of hotels, up and down train platforms. One very considerate New Yorker (yes, they do exist) helped me carry my bag up a second flight of subway stairs, but I did much of the hauling myself.

My hands, for the most part, did okay, since I was extremely careful with how I grasped the bag’s padded handle. But my right arm began to protest by the end of the trip. What a relief to discover that there’s a working escalator from the Amtrak platform to Boston’s Back Bay Station (not so for commuter rail tracks) when I arrived late Thursday night—and only a three minute walk to my hotel.

I was also compulsive about wearing gloves and using hand sanitizer throughout the trip. It paid off. No new infections.

I’m getting better at travel logistics. Definitely easier to pull this off as the weather improves. My new coat was just the right weight and protection for cooler, 60ish temps last week. And the travel blanket I carry with me provided the extra layer of warmth I needed on the train, which was way too air conditioned, per usual.

Coming home on the commuter rail to our home station, after a stimulating, rewarding few days, I was wiped. No energy left to read much or write on the train, just watched the scenery fly by. I was grateful I wasn’t driving. I was very glad to see Al, standing near the platform, as we pulled into the station. We enjoyed a lovely Shabbat dinner together at home. I slept soundly.

Tonight, the windows are open and its still 70 degrees. Soul Serenade is wrapping up with “Lord, I Feel Like Going Home.” It’s finally 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.

Coat Check

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Would someone please explain to me, when it’s still 50 degrees out, why stores are out of coats? I know it’s the end of April, but we’re far from the dog days of summer here in New England, and I don’t do all my shopping online.

104419903_e9171aaf64I discovered this strange fact of retail seasons over the weekend when I went hunting for a coat to replace my old spring/fall standby, which I’ve worn for at least ten years and is looking its age. I had a simple mission: find a shorter, wool coat that will keep me comfortable during transitional weather. Apparently this is something I should have thought of last August.

When I walked into a local Burlington (formerly Burlington Coat Factory, an off-price retailer specializing in outerwear—where I bought my now-ratty coat a decade ago), I encountered racks of summer shifts and prom dresses and all kinds of sports clothes. But where were the coats?

I asked a sales clerk. She brought me deeper into the store and showed me a few aisles amidst all the other clothes. “It’s the end of our coat season,” she said. “You’ll find the smalls over here.”

Did I mishear? I thanked her and went to look. There was one rack of small coats—including left-over winter jackets, a few raincoats and a collection of picked-over styles that clearly weren’t going anywhere. I walked around to the other side. All mediums. The next row were large and plus sizes. That’s it.

How could this be? I came here because of the coats. It can snow here in April. I know everyone else is running around in shorts and flip-flops because the sun is out, but I’m still cold, dammit!

So I started picking through the rack. I tried on long coats and short coats, designer labels and unknown brands, black, taupe, camel’s hair, red. Nothing looked good. They were either too big or too long in the sleeve or too wide in the back or too tight. Another woman was sifting through the rack, and we commiserated.

I was about to give up my quest when I discovered the clearance rack, with a few smalls mixed in with the rest. And there, hiding between an ugly black wool duffel and another black coat with a garish brash zipper, was a chocolate-brown-wool Calvin Klein trench, mid-thigh. I tried it on. The back didn’t ripple or buckle. The sleeves were roomy and didn’t bind. The pockets were in the right place, easy for my hands. I liked the color and the cut. And it cost only $55. The only drawback was the fact that the sleeves were a bit long, but I figured, at that price, I could always have them altered. Meanwhile, they’d keep my hands warm.

So, I bought it. One of life’s little victories. I’ll be wearing it when the rest of the world is going barelegged, but at least I’ll have style.

Photo Credit: Doug Ellis via Flickr

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.

Another Year Older

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I had a wonderful teacher in the first grade. Her name was Miss Kelly, and she had short, curly dark hair, a wide oval face and a big smile. She also seemed quite tall, although I wasn’t a reliable judge of height at that age. And she created fun class plays.

Crane BeachThat year, we performed what would now be described as karaoke. Picture a group of six-year-olds singing and pantomiming on stage to musical hits, circa early Mad Men, and you get the idea. (“How come everyone is laughing?” I remember wondering during our performance.)

I haven’t thought of that first grade play in years, but for the past couple of days, one of our songs arose, unbidden, from the recesses of my gray matter and has been cycling through my head—Sixteen Tons, sung by Tennessee Ernie Ford.

You load sixteen tons, what do you get
Another day older and deeper in debt. . . .

It was my birthday on Saturday. Fortunately, the debt part isn’t what brought the song to mind. But another day older is how I felt, for better or worse.

“Are you excited for your birthday?” Mindi asked me a few days before.

“I don’t know. I guess so,” I replied. After turning 60 last year, 61 seems a bit anti-climactic. And there’s something about adding the 1 to the 60 that tipped the scales toward the “older” side of the equation.

When the day arrived, however, I was in a great mood. Something magical always happens to me on my birthday, a feeling that the day is different, special, blessed. The weather was perfect—70s, sunny, azure sky. Flowers that had been hiding for months suddenly dotted lawns up and down our street. On my walk back from Shabbat services at our synagogue, I noticed violets, always a spring favorite.

That evening, to celebrate my birthday, Al and I drove to a dinner concert in a small town in northern Worcester County, at a restaurant venue that draws class acts from around the country. The show did not disappoint: Michael Allman, son of Gregg, performed amazing R&B and Allman Brothers’ classics with Charles Neville of the Neville Brothers on tenor sax and Jeff Pitchell, an outstanding blues guitarist. I was transported back to my freshman year of college, when Sweet Melissa, Midnight Rider and Whipping Post blasted from stereos in every dorm.

Continuing my birthday weekend the next day, after brunch with friends, we drove an hour-and-a-half to the North Shore, to Crane Beach, beautifully maintained by the Trustees of Reservations, a great conservation organization here in Massachusetts. It was chilly, the water was a deep blue and the air, crisp. But I’d forgotten my hiking shoes in our haste to leave, I should have brought an even warmer coat than the one I had, and the latrines were—well, gross is an understatement.

So I was pretty cranky as we set out on our beach walk. I love the beach in any weather, but I couldn’t appreciate it, at first. After grousing to Al as we walked a ways, I plopped down on the sand while he explored closer to the water (he, of course, was quite comfortable walking barefoot while I was all bundled up and still chilly) and lay back to absorb some sunshine.

The break helped lighten my mood. Soon I was exploring patterns in the rocks and the soft shadows left by footprints in the sand. I took some pictures. Al strolled ahead to inspect what was beyond the next curve in the shoreline. We passed other spring beach-lovers, some in winter jackets and walking shoes, others in shorts and flip-flops. I drew my layers closer to ward off the stiff breeze and kept on walking.

Crane Beach EstateAl noticed a path leading up the side of the dunes, with a boardwalk. At first, I was hesitant to climb, but curiosity got the better of me, so up we went.

Well worth the effort, as the path led to a grassy expanse overlooking the ocean—blue and green and tinged with beige above sandbars—and a nearby island. When we turned around, we realized that this was the view at the bottom of a sweeping lawn that extended from the hilltop Crane Estate, part of the Trustees of Reservations property.

As we hiked back down to the shore, I began to feel a bit tired. The wind was still stiff, and we had to walk into the breeze all the way back. By the time we finally reached the boardwalks leading to the parking lot, I was really dragging. We made a brief stop at an antiques store (overpriced) on our drive through a nearby town, then found a local restaurant a few blocks away for dinner.

Waiting for our meal, I was quite weary. “Are you okay?” Al asked. “I think so,” I said, though I wasn’t really sure. I was worried. Here we had just walked the beach for a few hours, and I was totally spent. We’re planning a trip to Europe this summer, with an aggressive travel itinerary, and all I could think of was—how am I going to keep up with what I want to see and do?

The meal revived me, though I could only drive half the distance home, and had to trade off with Al after we got on the Mass Pike. “I’m feeling my age,” I told him.

It wasn’t until later that night, after I had showered and gotten ready for bed, that a light bulb went off in my head: It’s hard to walk in sand. It takes a lot of extra energy, especially when you’re wearing the wrong shoes. And it was cold out, and it’s even more tiring for me to walk into a chilly headwind. Yes. Indeed.

So I stopped catastrophizing about our trip, at least for now. I do have to pace myself when I’m physically active. That’s the bottom line. But I can do it. I have to believe that.

In our first grade class play, the one other song I remember singing was I Whistle a Happy Tune from The King and I. We each had a partner, and we took turns singing and trying to whistle along to the music. I’m sure we looked adorably hilarious for all the parents in the audience, but I took it all quite seriously, as only a six-year-old can: 

Make believe you’re brave
And the trick will take you far
You may be as brave
As you make believe you are . . .

Yes. Indeed.

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.

Tending Barre

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Around New Year’s, I decided to shake up my exercise routine and join a community fitness center—to access a greater variety of classes, to use the fitness equipment, to break up my work day with a workout.

Good intentions. But, to be honest, I’ve been less than diligent about going. I’ve had plenty of excuses. It’s been way too cold out. I don’t like changing in and out of exercise clothes in the middle of the day. I’m too busy.

Then there have been a few mishaps as I’ve tried to find my place—like killing my knees in a Zumba class and getting short of breath in a “Senior” exercise class. The latter experience left me mortified (can’t they call it something else?), but it was a serious workout and I arrived late, didn’t warm up enough and started feeling faint during the aerobics portion of the class. I recovered, but not without scaring my instructor. Later in the day, I received a thoughtful follow-up email from the fitness center director to be sure I was okay and to suggest a few more options.

Really, the big issue is being careful that I don’t accelerate into strenuous aerobics too quickly, which seems to trigger what my physicians suspect is stress-induced pulmonary hypertension. But it spooked me, and I wasn’t sure what to do.

Then I discovered Barre Exercise. I’ve always loved dance, and over the past ten years, I’ve taken jazz, modern and Middle Eastern belly dancing. As my feet have become more sensitive, I’ve had to cut back. It’s very hard to keep my balance on the balls of my feet as the fat pads have significantly thinned out due to scleroderma.

But this class uses a ballet barre. So I have something to grab onto.

It’s been many years since I took a basic ballet class, and I am no Pavlova. But I had forgotten how much I enjoy the form and grace of ballet movements. All the Pilates classes have paid off. I know how to align myself and engage my core. And I still remember the fundamentals—foot placement, arms, the essentials of a plié, tendu, dégagé, coupé, attitude, battement. I can’t quite hold my balance in an arabesque, but I can approximate the position.

The workout is quite intense—deceptively so, because each movement is limited and controlled. But I work up a sweat, and the cold room no longer feels cold after about 15 minutes. The pacing works, so I can keep up with the aerobics without getting short of breath. And there is plenty of stretching at the end.

Most of all, I actually feel graceful. This is the best part. My range of motion has been so constricted over the years by this disease that the fact that I can actually make a beautiful shape with my body is astonishing and wonderful. I leave the class feeling refreshed and a little more confident each week.

I still need to figure out a way to get myself to the center more often. I know I should probably do the treadmill or stationary bike to build up my aerobic endurance, even though the prospect is boring as all get-out. I’d like to find another class that I enjoy. But at least I’ve been able to tap my inner dancer, once again. Whatever my physical limitations, this is what I always return to. 

Photo Credit: quinn.anya 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.

Crowning Glory

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At long last, ten months after I had to have a painful molar extracted, I finally have a full set of teeth. Nasty old 19, which nearly ruined a weekend vacation in New York City last May, has been replaced by an implant.

None of this has been fun. My scleroderma creates many complications for dental work, especially much difficulty opening my jaw wide enough for my dentists and hygienists to manipulate all the probes and pics and suction tubes and needles and pliers needed for the various steps in the process.

Despite the fact that the roots of my molar had resorbed to the point of exposing the nerve—a rare complication of scleroderma—pulling the damn thing out of my jaw was quite the ordeal last spring. My periodontist, whom I trust implicitly, had to drill it into pieces and extract it by segments, because the roots just didn’t want to let go.

After my gums healed up, the next step was a bone graft. Then setting in the foundation for the implant. All of this required long visits, a lot of Novocaine, and much pulling and stretching of my lips and cheeks, which don’t have much give. Plus months for my gums to heal, in-between. 

Finally, in February, I was ready to go back to my dentist and get impressions made for the crown. He, like my periodontist, understands how hard it is for me to keep my mouth open wide and is always as careful as can be, apologizing whenever I wince. But there’s just no getting around it—even when he uses the smallest tray for the impression or whatever, it hurts. I always feel like my lips or cheeks are about to tear.

Last week, my new 19 arrived. I went to the dentist Wednesday afternoon, looking forward to getting it over with, at last, and being able to chew thoroughly once again—without taking twice as long as normal (which is long enough already) to eat a meal. My dentist tested the placement three times, made adjustments and set in the molar. But when the cement dried, it had settled too close to the next tooth, so he had to jigger it a bit so a piece of floss would pass between the two teeth.

When I left, I noticed a crunching sound inside the molar when I bit down, but I told myself it was okay. I enjoyed chewing a piece of gum—on both sides of my mouth—on the drive home. But by evening, it was clear that the crown was loose. I could click it with my tongue. Saliva was pooling under the base. The left side of my tongue was really sore from all the poking and prodding earlier that day.

So on Friday, I made another 80 mile round trip, back to my dentist, to have the crown reset. I was frustrated, but there was no point in getting angry about it. I can’t open wide, and that makes it much harder for my dentists, no matter how good they are, to do what needs to be done.

Fortunately, this time, the procedure was successful. Ninenteen is now firmly in place. My tongue has healed up from the second round of poking and prodding, and my inner cheek has gotten used to feeling a tooth instead of a gap. I’m still relearning how to chew on the left side. I can’t sense food through the crown the way I can with a real tooth, so it’s taking some practice.

We’re still catching up with all of the dental bills, too. Insurance only covered about a fourth of the $7,500 total—better than nothing, certainly, but still. Talk about sticker shock.

But I can chew again. You don’t realize how important each tooth is until you lose one. Missing that molar has increased the risk of gagging on food, which happened far too many times over the past ten months. I’m grateful that I have excellent care, that I’m able to work my schedule around all these appointments, and that we’re managing to pay for it. There will undoubtedly be another tooth that needs replacing at some point in the future, but, with any luck, it won’t be any time soon.

Meanwhile, pass me the biscotti.

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.

Photo Credit: Kitchen Wench via Compfight cc