Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

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.

Don’t Do Anything Stupid

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It’s Sunday morning, overcast, nippy. I’m up at 6:00, most definitely not my favorite time to rise. But today’s the day that Al is running a 5K obstacle course race with his hospital co-workers at a track out in Western Massachusetts, and we need to be there by 8:30.

Al informed me about this a few months ago when he and his fellow social workers decided this would be a great team building activity, plus a good way to raise some money for a local charity, while they were at it. I didn’t give it much thought. As a marketing director, for years I would take my staff out to all kinds of unusual places—the Arnold Arboretum, a glass-blowing studio, a youth concert by the Boston Symphony—to strengthen us as a collaborative working group. So the basic idea sounded fine to me.

That is, until Emily came home for the summer from college and looked at the race track website. “Mom, have you seen what he’s supposed to do?” she asked, incredulous. I had to admit that I hadn’t bothered to look. I was in denial. But the man is going to be 62 at the end of October. He has a pacemaker. We agreed that she would urge him to do more than his usual morning workout to get in shape. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. Al started swimming after work. Emily went back to school in early August.

A few weeks later, Mindi came home from Israel for a month’s visit. “Mom, have you seen what he’s supposed to do?” she asked, after checking out the website. We agreed that she would push the pace when they hiked up Mt. Monadnock that week. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. They made it to the top of the mountain in good time. Al started running after work, and Mindi went back to Tel Aviv in mid-September.

The week before the race, he was running a full 5K around our neighborhood without stopping. I’d resigned myself to the fact that he was going to go through with it and that the weather forecast was crummy—chilly, with a chance of showers.

We’d discussed the possibility of my staying home, because we were both concerned I would get numb waiting for him to finish. So I decided to find a Starbucks nearest to the racetrack, in case it was raining or too cold for me to stand outside for hours. I finally checked out the website to get the address. And freaked out.

This was no ordinary obstacle course. You had to crawl in muddy water under strings of barbed wire. You had to hop from pylon to pylon over more muddy water. You had to squirm through dark, wet tunnels. You had to run up and down mucky terrain. You had to jump over a fire pit.

When Al came home Friday night, I said we needed to talk. We sat in the living room and I let loose.

“Have you looked at the 5-week training program they have on the website? This isn’t just about running. It’s cross-training! If I’ d realized what this was all about when the girls warned me, I would have tried to talk you out of it. You could really get hurt!”

Al said nothing. After nearly 28 years of marriage, he knew enough not to interrupt me when I was on a tear.

“I don’t care how cold or rainy it’s going to be on Sunday, I’m definitely coming with you. What if you sprain an ankle? What if you break a leg? What if you get a concussion, I thought. What if you have a heart attack? How will you get home?”

He kept listening, his face frozen in a tight grimace.

“I know how important it is for you to do this, I get it that you want to prove to yourself you can, and I know you’d never listen to me if I tried to talk you out of it. So I want to support you, but you have to promise me you will skip any of the obstacles that you can’t do. Don’t be a macho hero!”

“I won’t do anything stupid.”

“Okay, but what does that really mean?”

“It means I won’t do anything stupid!”

We went back and forth for a few more minutes. Al suggested that maybe I should stay home, because it was going to be too cold for me. No way.

“If you’re going to be stupid enough to do this, than I’m going to stupid enough to stand there in the rain and watch you and make sure you get home okay!” He agreed. Truce.

*       *      *

I take on the elements dressed in jeans and an old short-sleeved cashmere turtleneck, under an old long-sleeve cashmere v-neck, under a fleece vest, under my mid-weight down winter coat. I am armed with my fleece wrist warmers, gloves and a hat, and I have my umbrella. I look ridiculous, but I don’t care. I can’t take a chance on my Raynaud’s triggering for the next three hours.

As we drive out on the Mass Pike, the cloud cover is lifting. There are even a few patches of blue over Berkshire foothills spackled crimson and gold.

At the track, we find Al’s co-workers—three trim women, all at least half his age. Everyone‘s in high spirits as they don their purple tees with the hospital logo and their names on the back. A couple of athletic-looking boyfriends join the team, too.

Music pumps from two huge speakers. Other running teams sport everything from multi-colored unitards to chartreuse tutus, from Batman and Wonder Woman costumes to princess tiaras and centurion helmets.

To get to the starting gate for their 10:30 race, everyone has to climb over a four-foot-high plywood barrier. Al tells me later that he thinks the guys ahead of him are just showing off when they jump the wall. Then he realizes he actually has to get over the thing.

Smoke fills the air beyond the starting gate. An announcer juices the crowd. A siren blasts. And they’re off.

I find my way to a good vantage point midway through the course, a spaghetti-like dirt trail that winds up and down, back and forth through the muck. And wait. After about 20 minutes, I catch sight of part of the team running up the far side of the track. But no Al. A few more minutes pass. Then I see him, trudging slowly up the incline behind his young, spry supervisor. She pauses until he catches up. Okay, she’s making sure he’s doing all right. Good. I snap some pictures.

After another ten minutes or so, the team reaches the muddy sinkhole in front of me. I yell encouragement and snap some more shots. Al pumps his fist in the air as he wades through the guck. He looks exhausted, but he seems to be having a good time. I click away as they all hold hands down the giant slide into a mud hole, as they roll over red-and-white poles laid across muddy water, as they slog up and down.

When I can’t see them anymore, I head to what I think is the final obstacle, a huge pit of muddy water before a steep, gloppy incline. The sun comes out. I unzip my coat and vest and put on my sunglasses. Guys do cannon balls, flips, belly flops. Most of the gals just jump and wade through. One woman in a tutu drags herself to the side with an injured leg and is quickly picked up by the paramedic crew. But no Al and company. I keep watching and waiting.

Suddenly, there’s a hand on my shoulder. It’s Al, grimy and smiling. “We’ve been looking all over for you! We finished a while ago!” Oh no, how could I miss it! They crossed the finish line together, holding hands, he tells me. We head back over so I can take his triumphant portrait.

Al is ecstatic. “I really did it!” he beams. He gets his free beer and we grab some veggie burgers. We say our goodbyes and head to the car. On the way home, he tells me more about the obstacles. He did every one, except the pylons. Too much. So, he kept his promise.

“It was hard,” he admits as we drive back east on the Pike. “But the anticipation was worse than the actual race.” I agree. You never know what you’re capable of, even when your body doesn’t work so well anymore. Unless you try.

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.

Skin Deep

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There are some bizarre advantages to having scleroderma. For one, I don’t have as much body hair as I used to, so it take much less effort to shave my legs, and I hardly ever need to shave under my arms, which makes summertime grooming a snap.

For another, although my facial skin has loosened with excellent medical care and time, thank God (within the first five years of my disease, my face became so tight that I was having some difficulty blinking my eyes), I still have relatively few wrinkle lines. Whereas some women pay hundreds of dollars for collagen creams that plump up their skin, I have more than enough collagen to go around.

Which isn’t to say that I don’t fret about my appearance as much as most other women my age. In a culture that values youth and physical perfection, where magazine ads feature models with Photoshopped features that defy wrinkles and flaws, I am quite conscious of the ways that scleroderma distorts my face.

There is the fact that my nose—generous, to begin with, like my father’s and his father’s—has narrowed and looks and feels pinched. There are the red, blotchy telangiectasias (dilated capillaries) that speckle my nose and dot my right cheek. There are my droopy eyelids, which have fallen over the years due to thickening. There is the asymmetry in my facial muscles, so that the right side is slightly weaker than the left, causing me to smile a bit lopsided. And there are the deep furrows around my lips, resembling a cinched purse.

Most of this I can address with some artfully applied makeup. A couple of years ago, I discovered Arbonne products, which are vegan, extremely lightweight and moisturizing, and use a wonderful color palette that complements my skin tone.

But my deep mouth creases are another story. When they first developed, around the time I was approaching menopause, I was, quite frankly, horrified. This sounds shallow, I know. There are many other, much more horrible things that can happen to you than to develop ugly mouth wrinkles. And yet, self-conscious me hated them and wanted to do something about it.

So I consulted with my rheumatologists and a couple of specialists. A plastic surgeon advised me not to frown or look down, because it exaggerates my creases, and suggested Botox. The idea of injecting a substance that would relax my face into a mask seemed ridiculous, so I passed on that (and him). A cosmetic dermatologist suggested a more promising alternative, injecting hyaluronic acid (HA), a natural filler used to smooth out “puppet mouth” (those long creases that run from either side of the nose to the chin), crow’s feet and other facial flaws.

Al was supportive, though he assured me I looked fine the way I was. He understood how I struggle with the way scleroderma has distorted my body and was willing to go along with my experiment. After doing a test of HA on the inside of my arm to be sure I wouldn’t have an allergic reaction, I went ahead and had the procedure.

This was not fun. First, the cosmetic dermatologist marked the worst creases with a felt-tip pen. Then, after numbing the skin, he stuck a very sharp needle beneath each line around my mouth to fill the furrows with HA. It hurt like hell. He gave me a stress ball to squeeze, which didn’t help much. Neither did the anaesthetic. I quipped how we’ll do anything for beauty, and he just nodded. Of course. I wondered what he really thought of me and all the other women who came to him, in vain, to try to reverse the aging process.

As expected, the skin around my mouth reddened and swelled for several days (I did this at the end of the work week, so most of the evidence would be gone by Monday morning). As the swelling receded, I checked my reflection frequently. Were the furrows gone? Did I look like my younger, healthier self again?

Alas, as weeks passed, I realized that all I’d gained were small lumps where the deep wrinkles had been. The effect wasn’t smooth and youthful. In fact, the HA caused the skin around my mouth to feel a bit tighter, because of the extra filling. When the substance fully absorbed, after about five months, I was relieved. No one ever noticed the difference (or if they did, they never commented), I could open my mouth more readily again, and we were going to save a ton of money.

And, at the risk of sounding Pollyannaish, I discovered a much wiser, free solution: My mouth furrows disappear when I smile.

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.

On Turtles and Frogs

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When it comes to check-out lines, I’m slow. Really slow. Or so it feels when I’m standing at the register, fumbling to remove cash and slide coins back in my wallet without spilling them, fiddling with the receipt, finagling my wallet back into my purse.

If I’m shopping with one of my daughters, I’ll just let her handle the money so we get through the line quicker. If I’m shopping with Al, he takes care of the transaction. But since I usually do errands by myself, I’m often in this state of fumbling and feeling like I’m holding up the people behind me.

Lately, I’ve taken to hauling my purchase, change and receipt to an open counter where I can take my time to put everything back together. The other day I was in a store, arranging my stuff at an empty checkout counter, when the cashier at the next station asked if I needed help with an exchange.

“No,” I said, “I’m just getting organized.” To which she replied, “I wish someone would do that for me!” We laughed, and I felt better.

Some of this angst about being a slow-poke because my hands are clumsy is in my head. But I’m not imagining people’s impatience in the line behind me, either. We’re a society obsessed with speed.

When I was a marketing director for a dozen-plus years at a small New England college, I would always give my new employees a plastic turtle. Then I’d explain Herwitz’s Turtle Principle:

  1. Take the time to do the job right the first time, or you’ll end up spending twice as long fixing it.
  2. If our internal clients drive you crazy, draw into your shell and let it roll off.
  3. Pace yourself through the day, including lunch and breaks to clear your head. You’ll be more productive and keep your sanity.

Everyone loved these guidelines and our little department mascots, and many of my staff took their plastic turtles with them when they moved on to their next career step. While I’m sure it sounded odd and downright seditious to some of my colleagues who wanted us to jump to meet their demands, whenever we followed the Turtle Principle, we were highly productive, and whenever we succumbed to pressure and rushed to complete a project, we’d screw up.

Problem was, I had a really hard time finding those plastic turtles. I’d search in toy stores and party stores to no avail. It took creative thinking and serendipity to locate them. Plenty of plastic frogs, but few turtles.

Not surprising that the frogs outnumbered the turtles, when you think about it. We’re always hopping, running, chasing to keep up with
everything we try to stuff into a day. So often I hear people complain how busy they are, how exhausted they are—but the complaint often veils pride in accomplishment. How busy you are is also a measure of success. If you’re busy, you must be doing a lot of important things, right?

I get caught up in this cycle, too. Which is why I hate to waste time fumbling at the check-out counter, and why I’m so conscious of holding up people in line behind me.

But, really. What if we all took a few more minutes at the check-out line to stop, organize ourselves and chat with the cashier? Turtles are among the longest-lived creatures on the planet. In this 5-Hour-Energy, instant-download, five-minutes-ago-is-old-news world of ours, scleroderma or no scleroderma, I’d rather be a turtle than a frog.

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.