Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

diet

Open Wide

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It’s not easy to open my mouth all the way. Even as the stiffening of the skin on my face has eased significantly over the past 40 years (indeed, I have plenty of wrinkles to prove it), I cannot open wide at visits to the dentist or the doctor. My dentist and hygienist and periodontist are all well-versed in managing the complications of working on my teeth. Still, those visits are never easy.

But there’s another aspect to this issue that’s less obvious. And that involves food. In particular, food in restaurants. Most particularly, any kind of fancy sandwich.

Portions are so overdone in most eateries that a panini or vegiburger can be three inches thick or more. And I simply cannot open wide enough to eat it without making a huge mess. (Holding it in my hands is another matter—as in trying not to get sauce or condiments on my bandages, which can infect my ulcers.)

My compromise, on those occasions when I’m hungering for something hearty in sandwich form, is to eat it with a knife and fork. Which works, for the most part, but it’s not the same as tasting all the ingredients together. And manipulating those utensils through thick breads with my hands is no picnic, either.

One trick I’ve learned: It’s easier to eat a sandwich cut on the diagonal than as two rectangles. That way, I can take smaller bites to start and work my way to the center.

But probably the best solution to the restaurant sandwich dilemma: a good, old-fashioned grilled-cheese-and-tomato sandwich. On our trip in December to the Connecticut shore, I had the pleasure of rediscovering this favorite from childhood. Not too thick, not too sloppy (if I wrap it in a napkin as I eat), and so satisfying.

Have any of you with this same scleroderma issue found other good options? Please share!

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. Please view Privacy Policy here.

Image: Lefteris kallergis

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.

Why I Don’t Eat Meat but Still Wear Leather Shoes

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Living amidst abundance, graced with super-sized supermarkets that devote an entire aisle to the vast variety of mustards and ketchups Americans supposedly crave, we struggle with the luxury of choice: What to eat?

Years ago, I decided, out of religious commitment, to follow Jewish dietary law and keep a kosher home. No more ham-and-cheese sandwiches or shrimp cocktails. I didn’t really miss the forbidden foods, and the discipline gave my life needed structure and spiritual focus. In recent years, I’ve added a new requirement: stay away from meat.

In part, my reasons involve how my scleroderma makes it harder to eat meat. This is personal. There is, to my knowledge, no definitive research about the best diet for people with scleroderma.

I’ve simply learned over the years that if I ate red meat, I’d wake up in the middle of the night with indigestion and reflux. Sometimes, I’d aspirate the reflux and sit bolt upright out of a deep night’s sleep, gasping for breath. Not worth it, even though I used to love brisket.

I also find red meat difficult to chew and swallow. I’ve had a few decayed molars extracted because I can’t open my mouth wide enough for my dentist to fill cavities in the back. Sluggish esophageal motility has more than once caused me to gag on meat that I couldn’t chew completely. So, dense foods are problematic. But I have zero interest in pureeing my food, as some recommend. There are plenty of creative, nutritional alternatives for these issues without resorting to pablum.

Those are the pragmatic considerations. My decision to eliminate all meat from my diet is also ethical, inspired by my daughters while they were still in high school. Mindi, our oldest, was the first to disavow meat after learning how animals are abused when raised for slaughter. Emily, our youngest, came to the same conclusion about a year later after attending a week-long seminar on animal rights.

Between hearing what they had learned and expanding my repertoire of nutritious vegetarian meals for growing adolescents, I decided they were right. The cons simply outweighed the pros. An added benefit, going vegetarian significantly simplified our kosher kitchen, since we now only needed one set of dishes, instead of separate sets for meat and dairy.

That said, I am not a vegan, nor am I a pure vegetarian. I still eat fish because of the health benefits of anti-oxidants, but I’m seeking affordable resources for fish caught in the wild. I also take fish oil every day, which has significantly helped me fight colds.

And I still wear leather shoes. My feet are difficult to fit and require custom orthotics, because the fat pads have thinned due to scleroderma. There simply aren’t enough comfortable vegan shoe options with removable insoles, made from materials that breathe and won’t cause my skin to break down. So, this remains a compromise.

For me, the shift toward vegetarian eating has been an evolving process. The first step was giving up pork and shellfish, and separating meat from milk, as a daily reminder of my religious values. This is the next major ethical step I’ve made in redefining my diet.

I have friends who are vegetarian purists, who won’t eat “anything with eyes” and who won’t wear leather. I admire their commitment.

But even as I try to honor the rights of all living creatures, hoping to do my part to create a humane world, I also need to put my health first. Without it, I’m no help to anyone, least of all myself. So, for now, I’ll stay away from meat, but keep eating fish and wearing leather shoes. Not the ideal solution. Not yet.

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.