Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Plant a Seed

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In Australia, the sunflower has become the symbol of scleroderma awareness—because those of us with the disease feel better in the warmth of the sun. I like this idea a lot. Enough, in fact, to consider trying my hand at planting some sunflowers, if not this summer, then next.

1428247_41776650Yesterday, on June 29, scleroderma associations around the globe marked World Scleroderma Day. In nearly two dozen countries in North America, Europe and Oceania, a month of awareness-building culminated with a host of activities, from hospital presentations and meetings of scientists to art gallery exhibitions and a social media series of 25 second videos, in recognition of the estimated 2.5 million people diagnosed with scleroderma worldwide. Today, June 30, the need for a cure will be presented to the European Parliament in Brussels.

June 29 is significant because it marks the death in 1940 of the brilliant artist Paul Klee, who suffered from systemic scleroderma. Klee’s later work was strongly influenced by his disease, even as his last few years were among his most prolific.

Paul Klee’s legacy helped to inspire the formation of the World Scleroderma Foundation, which is based in Basel, Switzerland, and draws together world experts in scleroderma research and patient groups in an effort to support research for a cure. The WSF’s lead patron is Klee’s grandson, Alexander, and his family.

While 2.5 million individuals with scleroderma represents just a sliver of the world’s 7.3 billion people, The WSF makes a compelling argument for the importance of scleroderma research on its website: Not only is the search for a cure needed for the millions who suffer from the disease—most of whom are women of childbearing age—but also scleroderma is a “linchpin disorder”: 

A breakthrough in understanding scleroderma would doubtless have a strong impact on many other diseases involving abnormal scarring and blood vessel injury. This might include conditions as diverse as interstitial lung disease, intestinal hypomotility disorders and many illnesses with blood vessel injury as their basis.

Which brings me back to sunflowers. Each sunflower head can contain as many as 2,000 seeds, each of which, in turn, with the right soil, sun and moisture, becomes another sunflower. If we could find a cure for scleroderma, imagine how many other millions of people who struggle with related diseases could be helped, as well.

Plant a seed to find a cure for scleroderma. Visit wolrdsclerodermaday.org to see what’s going on around the globe in support of research for a cure, or make a donation here in the U.S. to the Scleroderma Research Foundation or the Scleroderma Foundation. We’re all in this fight together.

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.

Pep Talk

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No getting around it. I need more exercise. One weekly barre class is just not enough to stay in shape. Ever since Ginger died this winter, I haven’t been as good about taking a walk every day—no furry muzzle bopping my hands off the keyboard when it’s time to stretch and get out of the house. And I haven’t felt motivated to go to the gym. It’s chilly and impersonal and the three large flat-screen TVs broadcast an endless stream of bad news, too depressing.

But a visit with my cardiologist last week and my lead rheumatologist on Monday made it quite 2078973271_3307fc3441clear that I will feel a whole lot better if I move more. It’s critical for my longterm health and well being. (Not to mention body image—without Ginger’s nudging to walk regularly, I’ve put on five unwanted pounds since February—all below the waist.)

This has all been complicated by two issues: the fact that if I exert too quickly, I get short of breath due to some physiological complications of scleroderma, and the fact that my feet, despite all my efforts to find the right shoes, tire easily. They’re really sensitive from thinning fat pads, also due to scleroderma.

After long conversations with both trusted physicians, however, the bottom line is this: my body is high maintenance, but if I’m mindful of the boundaries of my endurance, the more I exercise, the more I’ll be able to endure.

So, I basically have to get off my butt and work out for a half hour at least three days a week.

I know I could listen to audiobooks or podcasts or music. But I’d rather read while I exercise. I have a backlog of books and New Yorker magazines. So my first strategy is going to be to try to read while I use the stationary bike. The treadmill is another option, but if I want to go easy on my feet, the bike may be a better bet.

Neither of these options sound thrilling. They don’t call it a treadmill for nothing. And a stationary bike is, well, stationary. But I can’t ride a regular bike anymore because of the pressure it puts on my wrists. So, I have to make the best of what I can actually do.

Another psychological obstacle to overcome: I will never look like all those pictures of buff, attractive people that decorate the fitness center, supposedly as motivation—”This could be you!” Nope. No way. In fact, I think those images do more to discourage me, because the ideal is so far beyond my reach. 

But the reality is that striving for an ideal body is so not the point. This is about building endurance, feeling more flexible and confident. Trusting myself that, even if I have this damn disease, I can still be physically strong.

My cardiologist said I shouldn’t overdo it, and there’s no need to do big, strenuous routines on the bike or to run on the treadmill. Just listen to my body and do what I’m comfortable doing, to start, and work up from there.

They convinced me. I know I have to. And who knows? Maybe I’ll surprise myself and actually enjoy the gym. Stay tuned. . . .

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: Harry Pujols

Hail, Caesar!

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I tried an experiment last week. I had to go to New York City on business overnight. There is no easy, direct public transit from Central Massachusetts. So, because I was in Boston during the day on Wednesday, I took Amtrak to Manhattan, and planned to take a bus back home the following evening. The bus was scheduled to make three stops in Connecticut along the way, including a transfer in Hartford.

247603105_e1a7241212_zI’m not crazy about long bus trips, but the plan saved me from having to drive home late at night, either from Boston in the east or from Springfield in the west, if I had gone Amtrak all the way. 

I thought I was being very organized. I had all my tickets printed out, in addition to the email versions on my phone. For some reason, the bus tickets (one for each leg of the trip home) printed out back to back, which rarely happens on my printer. So I assumed it was intentional to save paper.

Wrong. After a full day’s meeting on Thursday, I made my way to the Port Authority Bus Terminal in Midtown and found my gate. Then I noticed, to my dismay, that everyone else in line had two tickets—one to Hartford, and one to their connection.

When it was my turn to present my ticket and photo ID to our driver, I explained my dilemma and asked if I could just show him the ticket and keep it for my transfer. No, he informed me, he had to take it. They don’t accept electronic versions. Only paper. I needed to reprint my ticket when I got to Hartford.

Now, we had 15 minutes in the schedule to transfer busses. I knew the Hartford bus station was small. But I was nervous. And frustrated. If only I’d thought to make a second copy, just in case. After everyone was on the bus and our driver was finishing his paperwork, I asked him again if there was any chance I could show the PDF on my phone to the other driver. No, he reiterated, but he was sure I’d have enough time to take care of it in Hartford.

Nothing I could do but wait the three hours until we got there. We pulled out of the below-ground gate and up into traffic. Lots of it. Our driver welcomed us on the bus and introduced himself as Caesar. If it was too hot or too cold, he said, let him know. No loud phone conversations or music. No photos. I watched a flock of pigeons battling over something on a sidewalk and told myself there was no use getting upset. I just needed to sit back and see what happened.

By the time we got to New Haven, our first stop, we were already 20 minutes late. I was trying my best not to freak out. I called Al and gave him a head’s up—if I couldn’t make my connection, I needed him to drive over an hour to pick me up. Fortunately, he was his good-natured self about this delightful prospect, which at least eased the pressure.

For reasons unknown, on the way to our next stop, New Britain, we got off the highway and onto a series of side roads and byways lined with strip malls, then back on the highway. That put us behind by 25 minutes. I had no idea where we were, so I followed our route on my phone app, just to reassure myself we weren’t lost.

Finally, we pulled into Hartford, a full half-hour behind. I had traded seats with my seat-mate to be on the aisle and able to get off sooner. Caesar told us the gate number for our connection. By a miracle—or, rather, the inefficiency of bus travel—that bus was late, too, and had not yet arrived. So I grabbed my bag and ran to the ticket counter.

The ticket agent was, of course, helping someone else. And. Taking. A. Long. Time. I asked if I could just reprint my ticket, and she told me to wait my turn. Then she announced that her computer was not allowing her to print the other customer’s ticket. Meanwhile, the connecting bus had arrived.

I was at a loss for what to do. Fortunately, Caesar had come to the ticket counter. I’m not sure if he would have checked in anyway, or if he was following up on me. But given that we’d arrived late and he was due in Springfield, he could have just left. Instead, he walked with me back to our bus, pulled out his envelope of tickets, found mine, walked me back to the ticket counter and asked the agent to make me a copy. Of course, the copier was off and needed to charge. Did I mention this is not a 21st century operation? But within a couple more long minutes, it fired up and I had my copy. I thanked Caesar profusely and ran to the connecting gate.

I was the last person on the bus. We sat for another 10 minutes, for reasons unknown, and then departed. I called Al to let him know I’d made it.

“I guaranteed you would,” he said.

“How?”

“I just looked up the directions to Hartford.”

We laughed. Thank goodness. In the end, I made it to our own Union Station just 15 minutes later than I should have and was very glad, indeed, to see Al waiting for me with an open car door.

My knees were shot from the bus ride, with its cramped seating and worn out shock absorbers. And my nerves were a bit frayed. I was really tired. But if it weren’t for our driver, who took the extra few minutes to make sure I was able to make my connection—despite the fact that I was the only one on his bus who did not know the rules of the archaic ticketing system—it would have been a much longer ordeal. Maybe he took pity on me. Or maybe he thought it was ridiculous, too.

Hail, Caesar.

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: Daniel Lobo

Beta Test

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This summer, I’m in charge of Emily’s fish. He’s a cobalt blue Beta named Stitch, and he lives in a large glass bowl on our living room mantel, our little guest while Em’s away at an internship for her master’s degree program.

So far, I’ve succeeding in keeping him alive. This is remarkable, because when our girls were in grade school and went through a phase of having Betas (notice the plural), at least three of them died in fairly rapid succession.

This may have been due to the fact that we kept the fish bowl on top of the shelving that held our TV, and the water could have overheated. Or, more likely, it may have been due to the fact that I tried to clean the bowl and change the water every so often and probably shocked the poor fish to death.

This time, all I have to do is give Stitch two pellets of food every morning and add a little distilled water to his tank when the level drops by about an inch. Easy enough.

It took me a few tries to figure out how best to give him the pellets. They are very tiny, and I can’t grasp them with my fingers. So I scoop them out of their bag with a plastic spoon. Then I drop them into the water, being very careful not to drop the spoon in the water, too. That would not go over well.

For Stitch, this is the highlight of his day. As soon as I walk over to his tank and say hello (yes, I do talk to him), he swims over and jiggles around, fluttering his translucent blue flippers in what I can only describe as great fishy excitement. He doesn’t always find the pellets right away, so I tap the bowl in the right direction to give him a hint. Then he gulps them down. And swims back to see if I’m going to give him any more.

At this point, I say good bye and walk away, so as not to raise his expectations that there’s more food to come.

Really, it’s amazing how much you can commune with a fish.

I wonder what he’s thinking in his little Beta brain. Clearly, he’s learned how to recognize me, even if he doesn’t have a clue who or what I am, other than his source of food. I wonder if he hears the music on the stereo or the radio. Or our voices when Al and I are talking.

Mostly, he just floats gracefully around in his bowl, up and down, around and around. Sometimes he sleeps. Sometimes he zig zags. Sometimes he flutters. He seems content. Nothing to do, but just be.

I almost forgot to feed him one day last week—trying to do too much in too little time, juggling a lot of projects and family events and other responsibilities. I’m traveling on business again later this week, and I’ve been pushing to finish one thing and another before I go away overnight.

I’ll be sure to say goodbye to our grandfish before I leave (Al’s in charge while I’m away). And try to remember, in the midst of all my busyness, what Stitch does so well—just be.

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.

Salute

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Memorial Day is just past, the unofficial beginning of summer. I know this because my email in-box has been swamped with sales promotions since last Thursday, the scent of barbecues wafted through our neighborhood for the past three days, and numerous friends posted testimonials to veterans on Facebook.

Beyond that, however, one could easily have spent the entire past weekend with no sense of the holiday that marks sacrifices made by our nation’s soldiers.

On Sunday and Monday, Al and I walked to friends‘ homes to share meals. We strolled along leafy green streets, watched kids shooting hoops in driveways, greeted neighbors working in their gardens. I thought how lucky we are to live in a place that’s so peaceful and safe—untouched by the ravages of war on home soil.

We have our nation’s strong defenses to thank for that, and I’m grateful to all those who serve to protect us from harm. There are many, many problems to solve in this country, and our security in a dangerous world is not a given.

It’s easy to forget this as we get immersed in life’s daily upsets and annoyances. On Friday afternoon, I went to CVS to pick up a prescription that I’d called in the week before. It had been misplaced. After twenty minutes of fruitless searching, the pharmacist refilled the order. But she told me that she could only give me 30 days’ worth of pills, rather than the 90 days I was accustomed to, due to an unannounced change in our insurance. This had significant financial implications—the copay is $100 for one month’s supply, but had been $200 for three months. So, now, I am stuck with a whopping 50 percent increase for medication I need. This made me quite frustrated, to say the least.

By Monday evening, however, I had regained perspective. Yes, this is unfair and extremely expensive. But I consider myself very fortunate to be able to get the medications and health care I need to stay strong—despite the many imperfections in our health care system. Elsewhere in the world, where those systems break down due to war or civil insurrection, managing a chronic disease can become impossible.

When I was growing up in the early ’60s, we marked Memorial Day with a parade in our town. I was a Girl Scout, and we marched with our troop in green uniforms and badge sashes and white gloves, along with our elementary school principal and school district leadership and the local post of the Veterans of Foreign Wars. There were bands and flags and red-white-and-blue bunting on buildings. It was both solemn and exciting to participate. I had a sense of being a part of something greater than myself.

In recalling this, I am not trying to glorify or sentimentalize war or to promote ersatz patriotism, which only serves to muddy serious and necessary debate about our country’s future. I simply think something important has been lost when Memorial Day is no longer a communal occasion for honoring veterans—when our attention span has shrunken to “liking” a salute to veterans on Facebook, and the weekend’s main events are barbecues and car sales.

In synagogue this weekend, we said a special memorial prayer for all of the soldiers who have served our country. Our rabbi called up any veterans for recognition at the end of services. Three men stood up—all in their eighties.

I’m glad they’re still with us. And I’m grateful to so many others who have been injured or who laid down their lives to protect the rest of us, so we can enjoy a good meal with friends on a warm May evening without a second thought.

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: Christopher Koppes