Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

how to stay warm

Soup of the Evening

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Beautiful Soup, so rich and green,
Waiting in a hot tureen!
Who for such dainties would not stoop?
Soup of the evening, beautiful Soup!
Soup of the evening, beautiful Soup!
—Lewis Carroll, Alice in Wonderland

I’ve been making a lot of soup, lately. Despite a crazy 48-hours of 90-degree humidity last week, the nights are generally getting cooler, the maples are tinged with orange and I’ve started wearing my sweaters again. Fall officially arrives this Sunday, September 22, at 4:44 p.m. here on the East Coast.

No better way to take the chill off my hands and the fall transition than a big, steaming pot of soup. Cooking for Rosh Hashanah last week, I tried two new recipes. For the first night, I made an Armenian variation of lentil soup that, along with the expected chopped tomatoes, onions and garlic, included apricots and a delicate combination of cumin, ground coriander and dried thyme. Very good.

The second night (I always experiment on my guests—fortunately, this works out 99.9 percent of the time), I tried a Hungarian wine soup with blueberries, pomegranates and strawberries (though you can use any combination of fresh or frozen fruit), orange and lemon juice, seasoned with cinnamon sticks and cloves. Even better. Both recipes can be found in the wonderful international Jewish vegetarian cookbook, Olive Trees and Honey by Gil Marks.

I like making soup almost as much as I like eating it. It’s a magical process. I’m always fascinated by how easy it is to create a nutritious meal with a pot, water (or sometimes store-bought stock from an organic market or Trader Joe’s, which I find saves time and money and is nearly as good as homemade), fresh vegetables and seasoning.

As one who grew up on Campbell’s, I used to believe that soup was far too complicated to make yourself. It had to come from a can. The broth had to be salty, neon yellow, with tiny cubes of chicken and slippery egg noodles.

Then I discovered how to make chicken soup, with chunks of meat and lots of onions and carrots and celery, maybe some noodles thrown in. A whole new world opened up. How could I have ever mistaken that red-and-white-labeled, ersatz mixture for the real Jewish penicillin?

I no longer eat meat, so I no longer make chicken soup, but I’ve become a big fan of all kinds of vegetable and fruit soups, from the easiest minestrone to an amazing gingered plum soup from my Moosewood collection.

You don’t even need a recipe. Like a good friend, soup is forgiving. You can experiment, throw together whatever vegetables and spices you happen to like, add a little of this and a little of that, adjust here and there, and create a culinary masterpiece. (Just be sure to make some notes if you want to replicate it next time.)

All it takes a little advanced planning. Most soups involve only about 20 minutes of prep work. Then you can just go about your business while the concoction simmers and fills your home with the most savory smells.

And there is something so comforting about sharing soup at the table—delectable, relaxing, the perfect conversation starter. Easy to swallow. Revivifying.

Soup is an invitation and a fulfillment. A promise kept. Liquid love.

Chorus, anyone?

Beau—ootiful Soo-oop!
Beau—ootiful Soo-oop!
Soo—oop of the e—e—evening,
Beautiful, beautiful Soup!

Photo Credit: elana’s pantry 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.

Weather Spotting

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Hot. Cold. Hot. Cold. Hot. Cold. Hot.

‘Tis the season for unsettled weather, which always seems to be the case in New England. As the saying goes, if you don’t like the weather here, wait a few minutes.

My neighbors walk their dogs and tend their lawns in shorts, tee-shirts and flip-flops, but I’m still doing my thing with more layers than I’d like—long pants, a sweater or sweatshirt over a lighter top, my indispensable wrist warmers, socks and shoes.

I took the bold step of bringing my winter sweaters to the dry cleaners only last week, but missed them a few days later when we were deluged with cold rains that triggered my Raynaud’s and caused a messy leak in our basement. Why, I wondered, couldn’t the rain have fallen over Colorado’s burning Black Forest, where it was really needed?

Of course, you can’t control the weather any more than you can control a chronic disease with a mind of its own. The only thing you can control is the way you respond.

Managing my health takes much vigilance, many doctor’s appointments, good nutrition, regular exercise, taking all of my meds every day, tending my finger ulcers to ward off infection, getting as much of a good night’s sleep as I can, recognizing and managing stress triggers, appreciating love from family and friends, common sense, pro-active problem-solving and doing my best to stay positive. That’s the short list.

Dealing with the weather is a different beast. It’s not just about following forecasts so I know how to dress and keep warm. It’s also about trying to understand and not get overwhelmed by the strange shifts and extreme weather patterns we’re all experiencing. Fatal floods in Europe, record-breaking forest fires in the Rockies, the Oklahoma City tornado, last fall’s Superstorm Sandy—not a week goes by when there isn’t another extreme weather event somewhere around the globe. Lately I’ve been looking at the sky and feeling like it doesn’t make sense any more.

Mark Twain (or perhaps one of his contemporaries) famously said, “Everyone talks about the weather, but nobody does anything about it.” Well, I decided last week to do a little something. A bit of a weather geek to begin with, I drove an hour-and-a-half to Manchester, N.H., one evening to attend a three hour training as a National Weather Service (NWS) volunteer weather spotter.

Weather spotters fill in the observations that radar can’t pick up closer to the ground—like the size of hail or the siting of a funnel cloud, where there’s flooding or whether winds are strong enough to topple healthy trees. I can now explain how tornadoes form, what kinds of thunderstorms are the most dangerous and their warning signs. I have an official weather spotter ID and the number to call for our NWS bureau in Taunton, Mass., to report on signs of serve weather.

It’s my own small way of responding to climate change. If I can help to fill in the blanks about approaching storms, then maybe I’ll enable someone to get out of harm’s path.

It also gives me some sense of control, albeit illusory. At least I have a better understanding of what clouds signify and why hail falls and when to run to the basement.

In a perfect world, we wouldn’t have to worry about any of this—tornadoes that drop out of the sky and destroy elementary schools or diseases that appear out of nowhere and ravage our bodies. But the world is far from perfect. It just is. All we can control is our own response. This is mine.

Photo Credit: Nicholas_T 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.

Take Me Out to the Ball Game

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Some people have a knack for winning raffles. Al is one. So when he told me a few weeks ago that he’d won a raffle at work for two Red Sox tickets, I wasn’t really surprised, but I was glad to go. I enjoy a good game of baseball, and I hadn’t been to Fenway Park in far too long.

Fenway_5-8-13Our tickets were for last Wednesday night, Red Sox versus the Minnesota Twins. Tuesday, I checked the forecast: rain, maybe even a thunderstorm. I started fretting. I had spiked yet another infection over the weekend in an ulcer in my left thumb. What if it got too cold and damp for me to sit outside?

Al checked the location of our tickets, and our luck held—we were in the grandstand, under the second deck. Okay, game on! Even if rain caused a delay, I’d have my layers. I put two coats to choose from in the back of the car, brought along my gloves and leg warmers, just in case, and we set out for Boston.

Despite a downpour on the Mass Pike, heavy traffic and a search for ridiculously expensive parking, we made it with about 10 minutes to spare before game time. The sky had lifted, and everyone was in a good mood as we walked past the food and souvenir barkers, through security (a sign of the times, especially after recent events in Boston), and into the ball park.

Our seats, way in the back of the grandstand, were high and dry, and we had a great view along the first base line. Call me corny, but there’s something about that first glimpse of the ballpark—the emerald green outfield, neatly trimmed in a criss-cross plaid; the perfectly groomed clay-red infield; the players in their bright uniforms, warming up; the good-old red neon Coca Cola sign; the inevitable baseball trivia opening award ceremony (it was the 40th anniversary of the American League’s designated hitter rule)—that just made me grin and get a little lump in my throat.

We were both smiling by the end of the first inning. After the Sox pitcher gave up far too many walks, loading the bases for the Twins and enabling them to drive in four runs, our boys redeemed themselves in the bottom half with a run and a grand slam that put us up by one.

But it was all downhill from there. The Twins scored seven more runs in the second inning, and we never caught up. Final score, 15-8, a total rout.

Al was not pleased. But I didn’t really care that much, even though I would have preferred a better contest. I was having too much fun watching the people show—the guys in yellow vee-neck tees and ball caps, climbing up and down the stadium, carrying trays on their heads loaded with nuts, lemonade, hot dogs, water bottles and chowda-chowda-he’ah; the spectators bopping to the music, laughing at themselves on the big screen, trying to start a wave around the stadium, cheering as the ball flew high into the night sky and sighing as it was caught only a few feet from the Green Monster; the between-innings standing ovation for a dozen Rhode Island state troopers in their dress olive green uniforms and Smokey hats, honored for their help after the Marathon bombing; the seventh inning stretch, singing along with the crowd and organ to Take Me Out to the Ball Game.

No one around us got too drunk. People were chatting and texting and just relaxing, despite the lousy game. We had plenty of room and were able to move down to the front section as discouraged fans left early. People danced and pumped their fists to the team’s informal theme song, Neil Diamond’s Sweet Caroline.

Even in the bottom of the ninth, when we were so far behind, die-hard fans (maybe a quarter of the stadium, at this point) were still chanting a sing-song let’s-go-RED-Sox! It started sprinkling just as the game was ending, and the deluge and lightening held off until we were well on our way home.

Hope springs eternal at Fenway. Despite the fact that we lost, despite the threat of rain and my lousy infection, despite the fact that if Al hadn’t won the tickets we wouldn’t have been able to afford to go, despite doping scandals and the commercialization of professional sports and outrageous players’ salaries, there is just something so sweet about a Wednesday night baseball game at an old fashioned ball park that makes everything seem possible again. So good, so good, so good.

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.

Blizzard Warning

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The sun is shining, the snowplows are revving and Al is raking two feet of snow off our kitchen roof as I write. Twenty-four hours after Nemo blasted through New England, our street is a canyon of bright white snowpack amidst four-foot walls of plowed drift. Evergreens bow, weighted by mounds of melting snow, while barren hardwoods stand tall and unbroken, spared accumulation of Nemo’s fine, cold powder.

We went to bed Friday night listening to the wind howling overhead. The snow was blowing sideways near midnight. I watched it from our bedroom window, swirling and streaming in the streetlamp’s golden glow—reassurance that the power was still on.

Around five I awoke, unable to go back to sleep. Overnight, true to predictions, the snow had piled more than two feet high. Al’s car, parked in the drive, was half-buried. Only the  yellow cap of the fire hydrant at the front of our lawn was visible. The wind drove snow at a 45 degree angle. Flakes swirled and danced like millions of down feathers in a colossal pillow fight. And still, the power was on.

Once again, we got lucky. Through Tropical Storm Irene, through the 2011 Halloween Surprise, through Super Storm Sandy, through severe ice storms of recent years, and now through Nemo, we’ve had light, heat and hot water. I’m almost afraid to state it and tempt fate.

This has become my constant fear, whenever I hear news of a major storm’s approach: What if we lose power? With extreme weather the new normal, it is now inevitable that strong winds plus precipitation on a large scale will cause massive power outages that can incapacitate for days and even weeks.

At its peak, Nemo knocked out power for 650,000 families and businesses in Long Island and up the New England coastline; that number was halved by Sunday. Still, losing power in a record-breaking winter storm means waiting in the cold for your turn on the utility company’s long punch list. This is what scares me.

Because of my Raynaud’s and poor circulation in my hands and feet, I simply can’t stay in a cold house for long. Well before the pipes might freeze, I will go numb. We have yet to invest in an emergency generator, but if the extreme weather patterns persist, this may become a necessity in a few years.

I hate thinking this way. I used to love snow as a kid. A storm like Nemo would’ve had me itching to run outside and build a snowman, or flop on my Flexible Flyer to slide down the hill in our back yard. I would’ve played outdoors until the snow turned blue at dusk and I lost all feeling in my fingers and my teeth chattered. The next day I would’ve raced out to snap icicles from the eaves and slurp them like popsicles.

As Nemo kicked into gear on Friday afternoon and I walked Ginger in the mere two inches that had accumulated so far, I watched children a few houses up the street slipping and sliding in the snow. It looked like fun.

I chose to live in New England because I love the full four seasons, including winter’s magical frosting of the landscape. I don’t want only to think of weather in terms of the risks involved. Storms are part of Nature’s cycle.

And yet. Now every significant storm has an ominous edge. There were plenty of online jokes about naming this one Nemo, moniker of the little orange-and-white clown fish of Disney’s animated pantheon. But Nemo was also the name of the vengeful, tormented submarine captain in Jules Verne’s 19th century science fiction novels, Twenty Thousand Leagues Under the Sea and The Mysterious Island.

In Verne’s world, Nemo raged against oppression and British imperialism, sinking war ships and rescuing castaways, living by his own law under the seas. The storms that now confront us are Nature’s payback for humans’ destroying carbon reserves and wasting the planet. What we’re experiencing is just a taste of even more severe weather to come, if we fail to act.

I want to believe that we humans are creative, adaptable and capable not only of coping with the severe consequences of global climate change that we’ve brought upon ourselves—but also able and eventually willing, collectively, to reverse the trend, at least for our grandchildren and future generations.

Home generators may be the immediate response to ensuring personal safety during extreme weather. But if we’re really serious about reversing global climate change, we need to take responsibility for much more than our own homesteads. And we need to start now.

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.