Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Skirmishes

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Dear people, do you know of the battle of the vegetables?
All is put before you.
The tomato rises up from the center:
“My food is famous, better than the eggplant!”

The eggplant responds:
“Be quiet, tomato.
You are not worth a penny.
Two days in the basket,
you are ready for the garbage!” . . . 

—from Si Savesh La Buena Djente (Dear People, Do You Know of the Battle of the Vegetables?)

A lot of vegetables will be clamoring for attention at our seder this Tuesday night. We host the second night of Passover, and there will be both tomatoes and eggplants featured—but not in the same dish, so no fighting at the table.

On Sunday afternoon, I set out to buy the freshest vegetables (and fruit, too) that I could find before the holiday. The weather was warming, the air pleasant. I backed out of the garage. Ca-chunk!  Not sure what that was about, I tested my brakes. All seemed fine, and on I drove.

That is, until the tire pressure gauge lit up about a mile down the road. I pulled over. Sure enough, I had a very flat tire. I drove carefully into a nearby parking lot, called AAA, then called home.

There was a time, long ago, when I might have tried to change it myself. In grad school, I once spent a very cold afternoon in a garage with one of my classmates, who taught me how to tune up my old Chevelle. It was fun. My hands froze, but this was long before I knew I had any medical issues.

Much as I wished I could have saved time, there was no way I would now attempt to change the tire with my hands so damaged by scleroderma. Instead, Al came to the rescue, traded cars with me and waited for AAA to arrive, while I headed off to the market.

Already behind schedule, I got there about 1:30. Never go shopping for vegetables at a Wegman’s on a Sunday afternoon, especially before a holiday week. The produce section was mobbed. Mesmerized shoppers wandered amidst rainbow mounds of fresh vegetables and fruits, sniffing and squeezing, checking for ripeness and price, with many near misses between shopping carts. “Pick me, pick me!” cried the delectable produce from their artful displays—all except the organic strawberries, on special, which had been snatched up long before I arrived.

Fortunately, the eggplants were piled at one end of the produce section and the tomatoes, at the other. I assume the produce staff are well aware of their rivalry and keep them separate.

I resolutely stuck to my list—except for picking up a bag of lovely, multicolored fingerling potatoes. One more easy side dish of roasted veggies certainly won’t be a hassle, right?

On my way to check-out, a seductive display of fresh plum tomatoes nearly broke my resolve. But I reminded myself that it would be so much more hand work to peel and seed them for the Prassa Yahnisi (Turkish Braised Leeks and Tomatoes), rather than use the Kosher for Passover canned variety that Al had already bought for me. Plus, I didn’t trust them to be sweet enough this time of year, no matter where their place of origin.

Yes, yes, I know. Sorry tomatoes, I’m afraid the fresh eggplants won this round. Maybe next year.

But . . . did you have anything to do with that flat tire?

Note: You can read the entire translated Ladino poem, Si Savesh La Buena Djente—and find wonderful vegetarian recipes for Passover and year-round—in Olive Trees and Honey: A Treasury of Vegetarian Recipes from Jewish Communities Around the World, by Gil Marks (Wiley Publishing: 2005).

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

In Transit

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I’m heading to Chicago today, my first long distance business trip since I started my consulting practice just over four years ago. The sun is out, the skies are clear, at least for now, and it looks like I’m going to make it out of Logan before a Nor’easter barrels up the coast this evening.

After all, it is officially spring in New England. Why not more snow?

I’m looking forward to the trip and meeting my clients in person. Wonderful as it is to talk over FaceTime and Skype and GoToMeeting, there is a limit to how much you can pick up from an image on a slice of computer screen. So now we’re going to spend two days digging into content and messaging for a revitalized corporate website. It’s a puzzle that I love to solve, for some great people working to improve the quality of healthcare outcomes.

Four years ago, as I searched for job openings after I had to shut down my marketing department of a dozen-plus years because the college where I worked was in dire financial straits, I had no clue where I was headed. It’s been a long, slow haul, starting up a consultancy, and this is a very sweet watershed moment.

But before I get too comfortable savoring my progress, there is the bigger problem to solve: how finally to join the carry-on luggage club.

Up to now, I have always checked my bags on flights. I am very wary of straining my hands when I travel, lugging a suitcase, even on wheels, lifting, pulling, hoisting. But the last time I flew, my luggage got lost at JFK and took nearly a day to arrive on my doorstep. Plus, there is the added $25 luggage fee, both ways. And the time factor.

So I’m taking the plunge. On Sunday, I spent the afternoon searching for the right 9” x 14” x 22” suitcase that I actually can manage. I researched on the Internet. I tried various bags, testing zippers, pull handles, interior pockets and overall touch and feel.

With luck, I found the perfect suitcase, olive green, with sturdy construction, padded straps, full swivel wheels so I can pull it sideways as well as behind me, and a handle that lifts with the lightest touch of my thumb. All the zipper pulls are either flexible or have comfortable, soft tabs. It was an investment, but for my hands’ well being, worth the money.

Then there was the issue of all the creams and ointments that I need to manage my finger ulcers and skin. This led me to the discovery of GoTubes, which are squishy, washable plastic tubes in 1.5 and 3.0 oz. sizes that meet FAA 3-1-1 standards for carry-on. The tubes have wide mouths, so it’s easy to scoop in the creams and squeeze them out. No waste.

My third find was a soft, large purse with magnetic clasps, so I don’t have to use zippers to remove all the stuff you need at the last minute to get through security clearance. It has a center, flat zippered pocket (only one zipper to deal with) for my laptop and deep side pockets on either side, so I don’t damage my hands when digging around. The straps are soft and wide enough to stay put on my narrow shoulders. All essential criteria for ease of travel and minimal skin strain.

It’s been a scramble to get everything together in time and finish all my work before departing. Last night I was cursing at a pair of black wool crepe trousers, another great find but two inches too long. Nothing like fumbling with a needle and black-on-black thread that you can barely see because your reading glasses need a stronger prescription and your fingers can’t feel the thread as you hem. The evening was saved by my local public radio station, playing an hour of Aretha Franklin’s best hits, because today is her 72nd birthday.

So, happy birthday, Aretha. I’m off to Chicago. Have a great week, all!

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

Hair Wars

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In the Department of Little Nuisances, I find myself in an ongoing battle with stray hairs. This may seem ridiculous to report, but it’s one of the odd things about dealing with personal hygiene that comes along with my experience of scleroderma.

To wit, every day or so, one or more stray hairs drops from my scalp onto my face. I can feel it on my skin, but I have a devil of a time removing it with my fingers. In part, this has to do with the fact that many of my fingertips, at present, are swathed in bandages for digital ulcers, so I can’t actually sense the hair with my fingers. It also has to do with the fact that my fingertip sensitivity has declined over years of Raynaud’s, ulcers and nerve damage, so even with exposed fingers, I can’t always feel the thing.

Very annoying. And frustrating. Especially if the hair has fallen on my lips, but I can’t successfully blow it out of the way. I’ll end up wiping my face with my hands or wrists to get rid of the strand, only to have it stick to my clothes, where I can’t pick it off, either.

On days when I have a sense of humor, the whole bit feels like one of those old-fashioned slapstick comedy routines with fly paper, when no matter which way the actor moves, he gets more and more tangled up in himself. I’m imagining Buster Keaton.

But lately, this is just plain annoying, probably because the air is so dry from cold wintery temperatures and my clothes crackle with static electricity. I try to keep a lint roller handy, but the problem with lint rollers is that it’s hard to peel off the dirty layer—just another reminder of my fingertips’ inadequate pincer capability.

While I’m on a roll, here, the other issue with stray hairs involves my bandages. No matter how good a job I do every day to neatly wrap my fingers in clean dressings, within minutes, some hair from somewhere gets stuck to the edge of adhesive and becomes impossible to remove. Often, I have to resort to scissors to nip off the offending hair strand.

Now, admittedly, when dealing with a disease as complicated as scleroderma, this is a pretty minor issue. It’s not life threatening. It doesn’t keep me from doing what I need to do or love to do each day. One way or another, I manage to groom myself and not walk out of the house with a lot of stray hairs hanging all over the place.

But my hair wars are a constant, niggling reminder that there are a lot of things, even the most simple things, that this disease makes ridiculously complicated.

Our skin, the largest organ in our bodies, is an amazingly facile interface with the surrounding world—protector against infection, moderator of temperature, sensor of stimuli, transmitter of information to our brains. When our skin is damaged by scleroderma, our ways of perceiving and interacting with the world change permanently.

No easy solutions to all this. Patience, persistence, creative problem solving and a sense of humor are the best tools, I’ve found. But some days, I still get really annoyed about it all. And that’s okay, too. Anger has its place in dealing with chronic illness, as long as you don’t take it out on someone else or yourself. So I share this rant with you, dear reader, in hopes that you find a constructive way to vent your own frustrations about picayune problems of disease management. More power to us all.

And if you’re having a bad day, here’s Buster Keaton in The General, to give you a lift!

Video Credit: Internet Archive

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

Hamster Wheel

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Monday morning, 4:18.

Rolling over to adjust my pillow, I hope I can get back to sleep. If I wake anytime between 2:30 and 4:30 a.m., that’s often a futile quest. Tonight is no exception, thanks to a dying battery in our smoke detector that prompts intermittent chirps—undoubtedly the reason I woke in the first place.

With Al’s help, the battery is disconnected and the house, peaceful once again. He falls back to sleep within minutes. But the dark side of my mind is on full alert.

As I lie in bed, I tell myself to stop worrying about a fire, now that the smoke detector is disarmed. This takes a while. I know it’s ridiculous, but it’s the anxiety witching hour.

My mind reviews the past day’s events. I had spent much of Sunday afternoon cooking a dinner that Al and I delivered and shared with friends, a couple we hadn’t seen in a long time. We’d been meaning to visit for months. The husband is a physician, recently returned home after spending many weeks in rehab after a freak accident damaged his spinal chord, leaving him mostly paralyzed from the shoulders, down.

Sharp as ever, he is reflective, soft-spoken, pragmatic. He can maneuver his electric wheelchair with a joystick and use a tablet and computer with adaptive tech tools. He intends to return, eventually, to teaching and practicing medicine. The couple’s courage, humor, strength and resilience are inspiring. We left feeling hopeful.

But as I lie in bed, trying to sleep, all I can think about is, What if?  What if I could no longer take care of myself? What if I could no longer get around on my own? What if that happened to Al? How would we cope?

I try to talk myself off the hamster wheel, but my mind won’t settle. Prayers, meditation, nothing works. I’m just too rattled. I think about how I’ve had the advantage of a slowly progressing chronic disease, which has enabled me to learn gradually how to readjust. Our friends’ lives were undone in an instant. Life is fragile. Change is the only certainty.

Hours later, after I finally get just enough sleep to be able to function, I discover a well-timed blog post in my email about the importance of living each day fully. It’s the obvious answer to the night’s fears.

Terrible things happen to good people who don’t deserve it—accidents, disease, loss, trauma. We can anticipate, maybe prevent, maybe avoid some of the worst; but, ultimately, there is no way to predict the bad stuff. The only way to contend with life’s inevitable risks is to live each day well.

Sunday evening, after our friend’s aide finished feeding him the spinach cheese casserole I’d baked, he turned his head to me and said, “That was wonderful.” Whatever fatigue and hand soreness I’d felt from working in the kitchen evaporated in that instant.

I share this not to brag, but to emphasize the point: The only way to contend with life’s inevitable risks is to live each day well. Sometimes that means just appreciating the fact that you can get up on your own in the morning, even when you haven’t slept soundly. Other times it means cooking a meal for friends who are going through a really rough time, even if your own hands don’t work the way you want them to—or simply savoring the food on your tongue, however you’re able to eat. Ultimately, it means being fully present, in your own life and for others, making the most of each moment, each hour.

I’ll try to remember that, next time I can’t sleep.

Photo Credit: Lewaedd-Q 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.

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.