Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

Shall We Dance?

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When I was in ninth grade, I talked my best friend into taking a modern dance class together. We met one afternoon a week in the gym of a nearby elementary school, where we wore black, short-sleeve leotards and danced to Crosby, Stills & Nash’s Wooden Ships.

The opening moves involved balancing on your right foot, with your left leg bent to the side, toe touching right knee, your arms raised and hands pressed together to form a diamond shape around your head, as you swayed back and forth. This I can barely do anymore. But I still remember the dance, leading the front row in a recital, jumping into an impromptu rendition at a friend’s pool party when the song floated into the mix, moving with ease and grace to the music.

I always wanted to take dance lessons as a kid, but our mother, like most of her generation, was not interested in playing after-school chauffeur or paying for multiple classes. I had violin lessons, and that, in her book, was enough. So, as an adult, I began to make up for lost time and took a dance class here and there–intro ballet, a little jazz, even some disco back in the early ‘80s. At some point in the ‘90s, Al and I took a few ballroom classes.

Still, I was just dabbling. Every time I’d go to a dance performance, I’d daydream about being up on stage. But my body was getting stiffer and weaker, from scleroderma and a general reluctance to exercise. I’ve never been athletic or very coordinated, and about my only exercise, for years, was trying to keep up with my growing daughters.

Things were getting so bad that I was beginning to hunch up like a little old lady, always hugging myself against the cold that causes my Raynaud’s to flair. So about five years ago, I had a talk with my rheumatologist about how I really needed to get regular exercise. He advised me to pick something I really loved doing, because I’d have an easier time sticking with it.

My first step was Pilates, which has become a weekly life saver, strengthening my core and improving my flexibility and range of motion. Then I decided to try and dance again.

I started with an evening intro jazz class at a North End Boston studio. It was a near disaster. The class was far from introductory, more like an advanced beginner level. The teacher was beautiful, very talented and rapid in her instructions. The other students memorized the floor movements and combinations easily. I could barely get my body to move the right way, let alone remember all the steps. It wasn’t just my lack of experience or weak muscles. My brain simply couldn’t hold all the information and communicate it to my arms and legs.

At the end of the first class, I went to the teacher and started crying, because I so wanted to dance but found it so confusing and difficult. She listened sympathetically and gave me some great advice: Don’t compare yourself to others. Focus on one thing each class to improve. This is about your personal best. It takes time to learn.

For the next two years, I kept at it, switching to a class run by the studio director that was a bit slower and more to my liking. But still, even as I loved the music and moves, jazz was just a bit more than I could handle. So I decided to switch to a basic modern class at a different studio, this time in Cambridge. This worked well for several sessions. Whereas jazz, like ballet, embodies flight, modern is all about gravity. Fewer leaps. More feeling your weight, connecting to the floor.

And yet, after a couple more years, I found that I still couldn’t keep up. Too much balancing on toes and one foot. As my feet have deteriorated from scleroderma, the fat pads have thinned significantly, and I just can’t put that kind of pressure on the balls of my feet. Even slipping a pair of soft orthotics into an old pair of jazz shoes wasn’t enough to help me balance.

So for the past six months, on Thursday nights in Cambridge, I’ve been taking Middle Eastern belly dancing. Now, it took me a while to try. I’d been contemplating the idea for at least a year. There are so many lewd stereotypes about belly dancing that I had to get past. But I was drawn to the form by the basic fact that, at an intro level, it doesn’t involve balancing on your toes. And I liked the music. And it sounded like fun.

My expectations have been met, and then some. The music is great. My teacher is a wonderful dancer and performer, very experienced, excellent at breaking down the many isolation movements that are part of this most graceful and sensual art form. By the end of the hour, I’m usually sweating from the workout. It dovetails well with Pilates to strengthen my core muscles.

Best of all, I’m beginning to be able to move my body in ways I could have never imagined were still possible. I can snake my arms and wrists. I can swirl a veil. I can do figure-eights and hip bumps and shimmies. I can feel the music and move with the rhythm. And I feel good about my full figure (belly dancing is the one form of dance that rewards you for those extra inches).

In fact, it’s that last point that is perhaps the most important. Scleroderma is a disease that locks up your body, distorts your face and hands, and makes you feel ugly. Belly dancing, reconnecting with your sensuality, is about as far from that as you can get. I can’t think of a better antidote.

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.

The New Normal

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After Sandy skirted most of Massachusetts and spared us from week-long power outages and cold I couldn’t manage; after the nail-biting climax to the presidential election; after the Nor’easter that turned out to be more of a threat than a reality in these parts; after a major water main broke in Worcester last week, forcing the city to shut off the entire water supply for the night and institute a 48-hour boil order that had me fretting about how to keep my ulcer-ridden fingers free of infection; after all that, when the water was clean and the power was on and the heat was working and the sun was out—I came home to my email last Wednesday to learn that Israel and Hamas-controlled Gaza were shooting rockets at each other and all hell was breaking loose just 44 miles from where our oldest, Mindi, lives in Tel Aviv.

It was about 8:00 p.m. when I sent Mindi a text to find out how she was doing—3:00 a.m. her time. I figured she’d see my message when she woke up for work.

A few minutes later, the phone rang. It was Mindi. She had been out late with friends, talking about the situation, finding out who of her friends in the Israel Defense Force had been called up. She sounded okay, tired but confident, and it was a great relief to hear her voice. We agreed she would check in again on Thursday.

The next day, I was working on a project, trying to concentrate while scanning whatever news I could find about events in Israel. American media were still preoccupied with the Petreaus scandal and election aftermath. I discovered the Times of Israel live blog, which gives excellent up-to-the-minute coverage. I sent Mindi a text about when I would be home to talk.

Around mid-day, the phone rang. I recognized Mindi’s caller ID and answered right away. Long pause on the other end.

“I know you’re going to hear about this, so I wanted to tell you there were sirens in Tel Aviv today,” she said. Her voice was measured, carefully paced so as not to upset her already anxious mother. She explained how she had gone to her apartment’s bomb shelter for a half-hour, no damage from the rocket attack, and she was doing okay. Neither of us knew what to say. I tried to stay calm and absorb her news. We agreed she would continue to let me know if there was another attack. I told her I loved her. We hung up.

I spent the rest of the day trying to understand what was going on. I couldn’t concentrate. I was fighting tears. I skipped my evening dance class to be home with Al. We spoke to Emily and shared all of our concerns. I read as much as I could online to stay informed.

Friday morning, I woke around 7:00 a.m. to find a text from Mindi that there had been more rockets, but she was fine. She sent me a picture from her iPhone of a Fox news reporter interviewing people in a Tel Aviv café, shortly after the all clear. I asked her if she knew where the public bomb shelters were. She wasn’t sure. I spent the next 20 minutes on my iPhone, researching, and discovered that underground parking garages are on the list. I sent her all the links. I wondered how this could be, that I was looking up information about bomb shelters in case my daughter is on the streets of Tel Aviv when a rocket lands. Later, as I read of Hamas’s threats to send suicide bombers into Israel if the IDF sends in ground forces to Gaza, I texted updates. “Please don’t ride the buses or go to cafés right now,” I wrote.

On Saturday, I was relieved to read that the IDF had placed a fifth Iron Dome anti-missile defense system in place to cover central Israel. Hours later, it downed another missile heading for Tel Aviv. Mindi wrote, reassuring me she was fine and with friends.

On Sunday, I woke to a 6:45 a.m. text that more rockets had been intercepted while she was taking care of her toddlers in the Tel Aviv nursery school where she works. They were fine, she wrote. Then another message, about six hours later, that there was yet another missile attack, again intercepted. She went to the bomb shelter in her apartment. We texted a bit. She was on her way to friends for dinner. I told Al, who was outside, raking leaves. Then I went back to my writing, taking care not to bang the fingers sprouting new ulcers from all this stress.

Later, we spoke by phone. “You sound sad, Mom,” she said, edgy. No need to be concerned, everything is normal here, she insisted. I understood. She was coping on her own, and I needed to back off. Our old dance.

And so it is. My new routine: reading updates several times a day to keep on top of the news and any glimmer of a cease fire, trying my best to concentrate on my work and what’s in front of me, trying not to worry about my very capable 24-year-old who can manage by herself when rockets are flying toward her city, thank you very much, praying for peace, praying for the safety of innocents.

It’s amazing what you can get used to. Like the coming and going of strange, extreme weather. Like learning how to bleach your hand-washed dishes during a 48-hour boil order. Like sprinting to a bomb shelter within the two minute window you have after an enemy rocket launches toward your city, then going about your business. Like accepting that you have no control over what’s happening to someone you love so much, so far away. Like living with the drip-drip-drip of a chronic disease. Amazing.

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.

Meter Wars

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Years ago at an amusement park with my parents and sister, I remember standing in the arcade, watching a guy in a car-like booth trying to steer through imaginary traffic displayed on a video screen. As the timer ticked, images of people and cars jumped into view, and the guy stomped on the brakes and spun the wheel round and back, round and back, to avoid “hitting” them. The little crowd that had gathered to watch had a good laugh. I think he probably ran over quite a few pedestrians before the game was over.

I often recall that scene when I’m driving in downtown Boston. You never know when someone’s going to run into traffic, pass you on either side riding a bicycle, double-park in front of you, speed around you in a taxi or pull some other stunt in the race to get wherever they’re going.

But the biggest prize in negotiating Boston traffic, aside from arriving at your destination on time without an accident, is finding on-street parking.

Lately, when I’ve had appointments downtown, it seems that the major parking garages are only accepting monthly permit customers, and the Boston Commons garage, while usually available, is a often a longer walk to my destination. Plus, even with a coupon, the garages are pricey. So if I see a site, I grab it.

This happened last week, during Thursday’s Nor’easter. By a miracle, I saw a great space on Boylston, only a couple of blocks from my appointment. But there was one problem: The city is switching over to those new meters that take coins, cash or plastic.

Now, I like the idea of not having to carry exact change in quarters. You need a lot of quarters to feed the meter. But I have an extremely difficult time inserting and removing my debit card in these new machines.

Still, a good parking space is a good parking space, and on a chilly, rainy, blustery day, the less distance I have to walk, the better. So I quickly parallel parked, gathered up my purse and headed to the payment meter.

This one took bills, too. Great, I thought. Then I tried inserting a dollar. The wind was whipping the bill, and, of course, this dollar had a little bent corner, so I was standing there in the cold rain, trying to straighten it out and insert it into the slot. But the meter wouldn’t accept it. I tried reversing the bill. No luck. Each time, the wind nearly ripped the bill from my hand, and my fingers were getting numb.

No choice but to try the debit card. Here’s the issue: For some reason, the way these machines are designed, the slot is very deep and tight, and only a narrow edge of your card protrudes. So it’s very hard for me to grip the edge, because my fingertips are resorbed and sore from ulcers. It’s even more challenging when it’s cold out, since I have to take off my gloves to use the machine and my Raynaud’s kicks in. To compound the problem, for some reason, you have to insert the card and remove it quickly for the machine to read it. I find this next to impossible.

The last time I confronted one of these machines, in a Cambridge parking lot, I had to ask another person who was waiting to use it if she could insert and remove my card for me. This took a leap of faith, since it was my debit card. But fortunately, she was honest and helpful, and I was able to make the transaction.

This time, however, people were hustling down the sidewalk, focused on getting out of the wind and rain. There was a woman parked in a car right next to the payment machine, but I didn’t want to alarm her by knocking on her window. Anyway, I felt really stupid not being able to use the damn thing.

So I just kept trying. I inserted my debit card and tried to pull it out. Bad card read. I turned my hand sideways to try to get better leverage removing it. Bad card read. I tried using my right thumb and left forefinger to grab it. Bad card read. Finally, somehow, on about the fifth or sixth try, I managed to insert it and pull it out in time. This gave me the great privilege of paying $2.25 for nearly two hours on the street instead of at least $16.00 in a garage.

I removed my receipt and proudly placed it on the dashboard of my Prius. One of life’s little victories. But if someone out there is interested in designing a better, accessible parking meter that can be used by people whose hands don’t work, I’d be glad to consult.

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.

Waiting for Sandy

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Rain drips off the ridge of the bay window outside my home office. Leaves tremble and branches sway. One long, thin lilac branch waves back and forth like a pointing finger. The sky is the color of soaked cotton balls. I can hear no birds, only the patter and plop of rain drops falling off the tree limbs overhanging our roof, and the wind’s sigh.

It’s strange and curious and unnerving, this waiting for Hurricane Sandy, billed as the worst storm to hit the Northeast since the Hurricane of 1938. I wonder where the birds and squirrels go, how they will protect themselves when the gale batters their tree-top homes. We live within the red-lined high wind warning zone in Massachusetts, expecting gust of 40 to 70 miles per hour at some point later today. Maybe overnight. And there will be rain. Lots of rain.

I worry about the trees that sustained so much damage in last year’s freak October snow storm, when the night was filled with the gunshot of cracking branches. Our neighbor’s old Silver Maple toppled into our back yard, blocking our kitchen door and missing the roof by inches.

And I worry about losing power for days. This is my biggest concern. I can’t withstand the cold, even as the weather is mercifully well above freezing this time around. The utility companies have promised speedy, efficient repairs to downed wires. They’re anxious to repair their damaged reputations from last year’s storm that left thousands without power for days and even weeks. We were lucky and provided hot meals and showers for neighbors who went without heat. But will our luck hold again? If everyone loses power to this monster storm, where can we go?

It’s a stark reminder of how control is an illusion—often the way I feel about my health. A week ago Sunday, out of the clear blue, I woke up with cellulitis in my left elbow, just one hour before I was leaving for a two-day business trip to New York. Not knowing how quickly the red, puffy skin infection would spread, I took a gamble on managing with oral antibiotics that I always have on hand, per discussions with my infectious disease specialist, and headed out the door.

For the next 12 hours, on the train, at Penn Station, during meeting breaks and at my host’s home, I kept monitoring the progress of the warm redness, telling myself if worse came to worse, I was at least in a place with a high concentration of excellent ERs. “You know the cost of making a bad call,” warned the ID doc who was covering over the weekend, when I called Sunday night to report that the cellulitis had spread around the side of my elbow. “Yes,” I answered, “it could go septic.”

I promised I would go to an ER if I spiked a fever or if the infection spread any farther and prayed the antibiotics would finally kick in. Somehow, I got to sleep that night and woke to discover that the redness was receding. The rest of my meetings went exceedingly well, and I even had a spare hour to walk the High Line for the first time, under exquisite blue October skies.

That day seems a long time ago, already. Now I’m just sitting here, waiting to see if this mega-storm will be as bad as the forecasts predict, or if it will lose power as it spins over land.

We have no control over these things, of course. Whatever extreme weather we have set in motion with global warming, even if all the nations of the world finally get together and commit to reducing carbon emissions, we will all have to live with for years to come. At least we have excellent weather forecasting, unlike so many caught by surprise when the fatal ’38 Hurricane barreled over Worcester and up the Vermont-New Hampshire border. We’re also blessed with extensive emergency support. But there’s nothing I can do to stop another tree from falling or the wires from coming down. All I can do is stay indoors until the storm passes.

And there’s nothing I can do to prevent another mysterious bout of cellulitis or whatever else my scleroderma throws my way without warning. It just is. All I can do is take care of myself as best I can and not let this disease stop me from living my life fully. From where I sit, there’s no other choice.

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.

What Works for Me

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Every case of scleroderma is different. But after nearly 30 years with this disease, I’ve learned a thing or two about how to manage. So here are some basic suggestions that I hope will make life easier for you or someone you love with scleroderma:

Get the Best Medical Care You Can Find
This probably goes without saying, but it’s the single most important step you need to take to deal with this incredibly complex disease. If at all possible, find a medical center that specializes in scleroderma, even if you have to travel for occasional visits. Both the Scleroderma Foundation and Scleroderma Research Foundation can help you locate the nearest scleroderma specialists.

I’m blessed to live within an hour’s drive of Boston Medical Center, where not only the Rheumatology Department has extensive expertise in the disease, but also many other specialists do, as well. It really helps to have a cardiologist or dermatologist or nephrologist who also knows scleroderma, and you don’t find that unless you’re seeing physicians at a center where there’s a critical mass of scleroderma patients.

Get Enough Sleep
We’re all too busy. We all try to pack too much into each day. Especially if you’re juggling work and family and volunteering and aging parents and all the rest, it’s hard to get the sleep you need, even when you’re healthy. With scleroderma, you need to get sleep. Without it, you’ll get sicker. End of discussion.

Dress in Layers, Favoring Natural Fibers
When you need to keep warm, layers are the best way to go, especially if you’re moving in and out of spaces that vary in temperature. Cotton, wool and silk are my favored fabrics for warmth. Years ago, when I was first struggling with Raynaud’s, my rheumatologist told me that synthetics like polyester trap moisture and can make you chillier, whereas natural fibers wick away moisture and allow your skin to breathe. He was right. This is also the reason I wear shoes made of leather or natural fibers. Anything plastic or rubber causes a lot of perspiration and can lead to skin breakdown.

A lot of heat is lost through your head. That’s why, back in the day, people wore nightcaps (not the alcoholic variety) to stay warm in unheated bedrooms. Especially here in the Northeast, hats are a must in winter. I like wearing scarves made of natural fibers, for reasons cited above and because they make a nice fashion statement while keeping me comfortable.

Protect Your Hands
Okay, this is obvious. Here’s what I do:

  • Use disposable latex gloves for all cooking to keep bacteria out of my fingertip ulcers.
  • Wash my hands frequently with anti-bacterial gel. I have to do this to avoid getting my bandages wet. I checked this with my Infectious Disease doc and he said it was fine, contrary to all the hoo-hah about too much anti-bacterial soap causing germs to flourish. When I wash my bare ulcers, I use Aveeno Ultra-Calming Foaming Cleanser. It never, ever stings and is easy to wash off.
  • Use soft, flexible fabric bandages for finger ulcers. These can be hard to find, as many generic fabric bandages now include antibiotic ointment in the pads, which I don’t like. I favor Coverlet Adhesive Dressing Strips, with one caveat—the adhesive is very sticky, and you have to really soak the bandages before removing so as not to tear your skin. These are available online, not in stores. Aquafor Ointment is an excellent dressing. I also use small squares of Sorbsan, a surgical dressing made of seaweed, as a moisture barrier. And I change my ulcer dressings twice a day. Yes, it’s expensive. But not as expensive as getting an infection.
  • Wear wrist warmers. I like Wristies® fleece warmers, but there are now many alternatives on the market. I use these throughout the year, to keep warm in the winter and protect against air conditioning in the summer, and as an alternative to gloves during transitional seasons. They’re very affordable, come in many colors and several lengths, and there are even Wristies with a little pocket for a hand heat pack.
  • Wear natural fiber gloves and use mittens for best warmth. I have a very well-worn pair of leather gloves that are soft and provide ample room for my many bandages, as well as a good pair of down mittens for winter.

Get Regular Exercise
I let this go for a long time. Big mistake. You lose range of motion if you don’t move. One of my rheumatologists gave me the excellent advice to find some form of exercise I really love, because I’ll be able to stick with it. So I’ve been doing Pilates for several years, now, and also a variety of forms of dance—all beginner classes, and I’m a klutz, but it doesn’t matter, because I always feel so much better afterwards, and I’m even regaining a little grace, despite stiff joints. Yes, it’s hard to exercise when you’re in the active stages of scleroderma and so tired all the time. But even walking a short distance in fresh air is better than sitting still in your home, and it’s also good for your soul.

Surround Yourself with People Who Support You 
Many people don’t understand what you’re going through and will offer a lot of well-meaning but useless advice. Others will treat you like an invalid. Avoid them. Find those who will give you hugs when you need it, listen to your angst without criticism or commentary, remind you of your strengths when you’re at a loss, and most of all, who will accept you for who you are, no matter what. This is essential.

There’s much more I could say here, but I’ll save it for future posts. I’d love to hear what’s worked for you, too.

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.