Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Tipping Point

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I got sick last week—not horrible, serious, life-threatening, needing-hospitalization sick. Just plain old rotten cold virus sick. But it was definitely not fun.

It started as swelling in my throat and chills on Monday, moved into achey joints by Tuesday, evolved into congestion on Wednesday, and by Thursday I was coughing and battling a very runny, stuffy nose. Lousy nights with poor sleep. Mornings hacking my guts out. On Friday, I forced myself out of the house to do a few important errands (like finally getting the snow tires on my car before the snow arrived Sunday night) and then struggled to work at my desk for the rest of the afternoon.

Now, none of this is out of the ordinary for a cold. It’s just that I feel it worse than I used to, mainly because my scleroderma exacerbates all the symptoms. Chills are really chilly. At one point early on, my hands were so numb I couldn’t pick up anything, and the only remedy was a hot shower. Aches are really achey. My left arm felt like I’d just had a tetanus shot.

Figuring out what to do about this is always a challenge, because decongestants can set off my Raynaud’s, too, and make my nose freeze. So I often rely on spray decongestant, but that has a boomerang effect if I overuse it, and makes the swelling worse.

So, feeling pretty desperate on Friday to breathe and relieve the muscle aches from too much coughing, I decided to try an over-the-counter liquid cold remedy. To my amazement, it actually worked without making me numb. Thank goodness! That and some adhesive strips to keep my very narrow nasal passages open, plus limited use of nasal spray, enabled me to get some sleep Friday night.

On Saturday, I stayed home to get more rest. Ironically, while reading a New Yorker article about a new treatment for insomnia, I passed out on the couch for another four hours. (Really, the article was interesting!)

When I woke up, miracle of miracles—I felt like myself again. It was as if that extra rest enabled all the working parts of my immune system to finally get the combination and overcome the virus that had been plaguing me for a week. I’m sure it actually took six days of microscopic activity to reach the tipping point from sick to well, but given how poorly I’d felt just 24 hours earlier, it sure felt like the extra sleep was the golden key.

A few days later, I’m still hoarse, and my energy is not 100 percent, yet. But I’m close, thank goodness. I’ll be even more vigilant using anti-bacterial gel every time I touch a debit card keypad and signing credit card slips with my own pen during cold and flu season. At least, that will give me the illusion of some control—and maybe some real protection against getting sick again, soon.

Meanwhile, it’s great to breathe again.

Image Credit: Illustration from Johann Remmelin, Pinax Microcosmographicus, (Amsterdam: Ex typographia Pauli Matthiae . . .; Voor Justus Danckersz, 1667); U.S. Library of Medicine, NIH; courtesy www.publicdomainreview.org.

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.

Carpe Diem

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A glorious weekend, indeed, this past. Leaves crinkle and swirl in honeyed showers as temperatures hover now in the upper thirties. But Saturday afternoon, hours before we turned back the clocks to usher in bare-branched November, the trees were still lush with mulled hues of cinnamon, ginger and burgundy, and the air was warm.

Al and I looked at each other. It was simply too beautiful to stay indoors. So we put on our hiking shoes and climbed into the car with Ginger, our aging Golden, whose reddish fur matched the day’s pumpkin glow. It was a bit of a scramble. Her haunches are arthritic, and she needed a boost to the back seat.

But once we arrived at our favorite hiking spot, about 20 minutes from home, Ginger was in her element. She’s 15, now, a centenarian in human years, but she can still trot along with us, up and down the gently sloping trails.

We took our time, pausing as I snapped pictures of milkweed pods—my childhood favorite for late autumn—and a slender sapling glowing gold in the midst of deep green pines. Ginger loped ahead to catch up with Al, then turned and waited to be sure I was still coming.

As we climbed a steep hill, she kept apace with Al. I brought up the rear. I’m slow at this, my breath shortened by lung scarring from my scleroderma. It always takes a while before my breathing can catch up with the exertion of walking up an incline. But as long as I pace myself, eventually my metabolism matches my intentions.

And there was so much to savor: cream-colored mushrooms large as saucers, a hillside aflame in scarlet shrubs, tree chunks carpeted in lime-green lichen. Deeper into the woods, all we could hear were Ginger’s panting and our feet scuffling through crisp leaves, interrupted by the occasional thrum of a private plane flying somewhere overhead. The air was fresh, sweet, enriched by decaying foliage.

We stopped by a bridge high over a brook, the water low from lack of rain, but still burbling. Ginger wandered back and forth, then patiently waited as we pulled tufts of loose fur from her hips. “You okay?” I kept asking her, once we moved on, as she trotted back to check on me.

Rounding through the wildflower meadow near the trail head, Al stopped to crack open a dried milkweed pod and strew its glinting silk to the light breeze, ensuring a good crop for another visit. Late afternoon sun illumined leaves like stained glass.

My knees gave out just as we walked down the road to the car. Perfect timing. Ginger clambered into the back seat with some help and lay down, panting, with a Golden’s grin.

“I’m so glad we decided to go,” I said to Al. He smiled and nodded, then drove us home.

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.

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.

Barnacles

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Overheard on the Block Island Ferry this past Sunday . . .

Boy, about 10, looking over the railing at sea foam as the ferry pulls out of Old Harbor, heading back to the Rhode Island coast: “Look, there’s barnacles in the water! Do I have barnacles?”

His older brother, maybe 11: “No, you don’t get barnacles unless you’re under the water for a long time, like maybe two weeks.”

Fortunately, the older brother is correct, and the boy has attracted no barnacles of his own. The ferry’s powerful engine hums as we pick up speed and cruise past the island’s cliff-like dunes, dull copper beneath overcast skies.

I lean back against the blue bench along the middle deck, watching the dunes and the North Lighthouse slip past, and contemplate barnacles, those tiny, cream-colored sea creatures that attach themselves to boulders and boats and whales in lacy patterns and feed on plankton within their sharp, crusty shells. No need to move anywhere once they find a home. They just latch on and draw sustenance from whatever drifts their way.

Like worries.

I have a few of my own that I’d like to shed, worries about my health, money, work, family transitions, our aging golden retriever, reactionary politics, the NSA, the Middle East, climate change.

But they’re tenacious, clinging to my subconscious, scraping me when I indulge them, cutting. No easy way to dislodge them and toss them back into the sea.

The ferry cruises now at full speed across open ocean, heading to the mainland. A small red tugboat pulls what appears to be a stranded white yacht. On the horizon, sailboats catch the evening breeze. I relax into the rhythm of the boat rising and falling over light waves. Concerns that have dogged me all day when I should have been enjoying myself magically evaporate into the moist sea air.

I’ve been rereading Melville’s brilliant Moby Dick this summer. As the ferry surges forward, I recall Ishmael’s opening monologue:

Whenever I find myself growing grim about the mouth; whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me, that it requires strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people’s hats off—then I account it high time to get to the sea as soon as I can.

A flock of cormorants fly in formation, skimming the water. The setting sun burnishes blue-black waves to a salmon-pink patina.

From saltwater we came. Perhaps that is why the sea is so soothing. Sail on, sail on, swift enough to evade the barnacle’s pincers, slow enough to cast angst adrift. At least ’til landfall.

Photo Credit: shoothead 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.

Boxed In

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Last week I found myself sitting inside a tall, phone-booth-shaped plexiglass box, staring out a window at blue sky over Main Street and the County Courthouse, my nose squeezed between padded clips, panting into a rubber mouthpiece connected to some rigid tubing connected to a plastic bag.

This routine is part of my biannual pulmonary function test, or PFT, a series of measurements to assess my lung capacity and efficiency. I’ve had to undergo this test numerous times over the course of about 25 years, to keep track of how my scleroderma is affecting my ability to breathe and absorb oxygen into my bloodstream. The same tech has been administering it since I began. His name is Alan.

We’ve both gotten grayer over the decades. Alan is an avid golfer who favors tie-tacks that look like golf clubs with a little pearl for the ball. Whenever I have my appointment, I always ask him about his golf game, and he always asks me if I’ve written another book like my environmental history of our city’s urban forest, which I published in 2001.

Then I take note of what’s new in his office. This time, it’s the location of the plexiglass box. Usually I don’t have to sit in the box until the end of the series of tests, and it’s in another room—without a view. But the equipment was updated since my last visit, and now the box is in Alan’s office. Which is a nice thing, because he happens to have a corner space on the third floor of the hospital with a great view of downtown.

And the view really helps me get through the tests, especially the last series when I essentially have to hyperventilate into this bag with the door of the box closed, to control the air quality within the box. Not for claustrophobes.

Alan has a very soothing voice. “Breathe normally, now,” he instructs me after I adjust the tight nasal clips and arrange my lips around the rubber mouthpiece so no air escapes as I breathe into the plastic bag. All of this equipment is attached to the internal wall of the box, with some other tubing leading outside the box to tanks that provide the correct mix of gases. The set-up is fixed, so you have to sit really straight as you breathe into this contraption. Truly an awkward position. Nothing normal about it. At least I know what to expect after all these years.

We begin the first series (door open). “Okay, now push, push, push, push until you can’t get out any more . . . . and b-i-i-i-ig breath in!” I force out the air from my lungs until they feel flattened and then inhale a big gasp, but it always seems like I can’t refill them all the way. Frustrating. Each time I do this test every other year, it gets a little harder. Two more times to repeat. I marvel at how Alan must say the same words thousands of times annually with different patients, but never seems bored or annoyed.

There are several more variations on this basic theme of normal breathing, big exhales and big inhales. Then there’s the closed-door test, when you have to pant into the bag with your fingers on your cheeks, and then something clicks inside the connection between the mouthpiece and the bag and you have to keep panting, but your exhalation is blocked, so it’s harder. Every test requires three repetitions.

Time to remove the damn nose clips and rest in-between series, as the equipment recalibrates. I remark how the County Courthouse is all finished now, as opposed to my last visit, or was it the one before, when it was still under construction? I remind Alan how my first visit was at the old hospital, in a room with no windows and a big green metal tank with the gauge on top in full view. Now the gas tanks are hidden behind a curtain.

He pulls up the results on his computer screen. Some are within the same range as two years ago, some a little worse. I try not to get discouraged. Better to wait until my rheumatologists can interpret it for me. Overall, considering how long I’ve had this disease, I’m still doing well. Need to keep exercising.

After about a half-hour, we’re all through. “See you in two years,” I say, as I walk out the door into the white hospital corridor. Deep breath. Glad to be out of that box, heading into a blue-sky day.

Photo Credit: conform 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.