Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Tender Is the Grass

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Is it possible? Has spring finally arrived? After this bitter cold, seemingly endless winter, it’s hard to trust. But the signs are visible.

Sunday. Sunny, 55 degrees. The Red Sox opened at Fenway on Friday (Never mind that the Brewers swept the three-game weekend series—we’re just getting started, and Ortiz is still wearing a Boston uniform.)

Crocus_4-6-14As I walked Ginger round the block Sunday afternoon, I noticed tender green grass shoots peeping through thatch. Purple and fuchsia crocuses yawned on the sunny side of the street. Even in our shaded back yard, one lavender bud had valiantly pushed its way toward light.

At last. It’s the second week of April, and the forsythias are not yet aglow. But the sun is brighter, the sky, bluer, and only about a foot remains of the last, stubborn, dirty pile of snow out back.

It’s the season of promise and not-quite-there-yet.

Neighbors walk by in jackets and sunglasses. Around the corner, kids’ bikes litter a front lawn. On my route with Ginger, I reluctantly wear my mid-weight winter coat, insulated gloves and wool hat. It may be well above freezing, but 55 is still chilly for me and my Raynaud’s. My finger ulcers are finicky in the spring and need protection and mindful nursing. It will have to get into the mid-60’s before I can switch to a shorter wool coat, high 60’s or even low 70’s before I can send my winter sweaters to the dry cleaner and go without gloves.

I’m also still tending my light-sensitive eyes in the wake of complications from conjunctivitis. The infection of two weeks ago has cleared, but an allergic reaction to the eye drops left me with mild corneal abrasions in both eyes that required more medication. I can now look at my computer screen without discomfort, but reading and sunlight remain tiring. It is just never simple with scleroderma and, in my case, the added complication of Sjogren’s, which renders my eyes, nose and mouth too dry to begin with.

I’ve been extremely frustrated about this over the past week. Writing and reading are such a huge part of my work and daily pleasures that my struggles with vision have been both aggravating and frightening. Why did something as mundane as conjunctivitis have to turn into such an ordeal? What if my vision doesn’t return to normal? How long will this last? Do I always have to get an infection of one sort or another when I travel?

For all these reasons, Sunday’s promise was most appreciated. Those bright green sprigs of grass, the joyful crocus blooms, the barely visible buds on tree branches—just knowing that baseball bats are smacking over home plate once again, whoever wins—all remind me that winter really does end, even in New England.

I will retire my down coats and wool sweaters and don rayon and cotton once again. The days will continue to get warmer, on average, and longer. Leaves will unfurl and shade the street. My eyes will fully heal.

And, if we’re really lucky, the Sox will bring home another World Series championship this season. Welcome back, spring.

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

The Stress Factor

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I come from a long line of worriers. Both of my parents and their parents and, I suspect, their parents’ parents, all the way up the family tree, made an art form of anxiety.

Some of this angst was well-earned. My mother and her parents escaped Nazi Germany in 1936, but other family members were not so fortunate or foresighted to get out when it was still possible. Their Holocaust legacy always hovered in the background, somewhere out of reach and unspoken, throughout my childhood in the 1950s and ’60s.

Some of it is hard-wired. I have a writer’s vivid imagination, which serves me well but also can keep me up at night, ruminating, when I’m fretting about family or finances or how I’m going to get all my work done or the fact that I’m not sleeping and my blood pressure feels higher or my arythmea kicks up, which, of course, only exacerbates my angst.

To be fair, anxiety has its place. It can be a great motivator, as long as it doesn’t get out of hand. My coping style includes thinking through every possible outcome of a particular issue that’s worrying me and how I would handle it. This drives Al crazy, because, as he rightly points out, most of that stuff never happens. But for me, it helps, up to a point, to be proactive.

However, I’ve learned from hard experience that if I go into overdrive mode, I can make myself sick. In fact, though there is no way to know how and why I developed scleroderma, stress—and how I responded—was definitely a contributing factor. I can’t prove this, but I know in my gut that it’s true.

I first began to develop symptoms of scleroderma—odd swelling of my fingers, migrating joint pain (as in, I’d have pain in my shoulder for an hour and then it would shift to my knee, without rhyme or reason) and fatigue, plus intensified Raynaud’s (I’d always had cold hands, but not red, white and blue ones)—in my late twenties.

I had just extricated myself from a very unhappy marriage and was living on my own, struggling to make ends meet after being laid off from my job as news director at a local public radio station, thanks to budget cuts by the Reagan Administration. How could this be? Here I was, with two master’s degrees, coming from a family of long-lived marriages, no divorces. I felt like a total failure.

My response was to shift into fifth gear. I found two part-time jobs and teamed up with a public radio station manager to write a grant to create a statewide news service for all the stations that were cutting news staff due to the same budget cuts. We got funding, and I was off and running.

Run, I did. I drove all over Massachusetts doing interviews. I worked long hours writing and producing stories. I pushed myself very hard. It was great work, but I got run down, physically and emotionally.

In the midst of all this, I began having problems sleeping. I struggled with self-confidence. The idea of dating terrified me. I obsessed about my work and relationships. I was scared any time I got sick. I began to have trouble with digestion and lost weight.

My doctor couldn’t find anything wrong with me, so I just felt ridiculous to be worrying about it all, but worry, I did. I sought help in therapy, which enabled me to clarify some of my issues. I formed new, valued friendships by joining a synagogue. I prayed a lot.

But I continued to worry. Some of this angst translated into panic attacks, particularly when I went out to eat in restaurants. There were nights when I would lie in bed, awash in adrenaline.

With time, I gained more confidence, found success in my journalistic pursuits and learned to take better care of myself. My rabbi introduced me to Al, and within a few months of our first date, we were engaged. Life felt much brighter.

But the damage to my metabolism from all that intense anxiety, all the adrenaline rushes, over the prior three years on my own, was done. A few weeks after Al and I returned from our honeymoon, I saw a rheumatologist, due to abnormal blood tests, and learned I had some form of auto-immune disease—either rheumatoid arthritis, lupus or scleroderma.

This is not to say that I brought this disease upon myself. There was no way to know I had whatever genetic predisposition or was subjected to whatever environmental triggers that are responsible for this illness. But I am convinced that all that adrenaline somehow played a significant role in weakening my immune system. Plenty of research connects the two.

In conversations with other scleroderma patients, I’m always struck by similar stories about disease onset—some kind of major personal loss or trauma, followed by a deep struggle to cope and a lot of angst. I can’t say this is true for all of us, but there seems to be a common thread. Recent research points in that direction.

Would it have made a difference if I’d had a more effective coping style? I don’t know if I could have actually prevented the disease, but I certainly would have felt significantly better if I’d been able to shortcut the adrenaline rush. To this day, I still have to check myself, meditate, walk or do something to shift gears and redirect my brain when I go into overdrive.

Which reminds me. Al just sent me an email that we have meditation group tonight. No excuses, this week.

Image Credit: “Ague and Fever,” Wellcome Library, London. Thanks to 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

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

Weighing In

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Glow little glow worm, glimmer, glimmer,
Someone’s getting thinner, thinner . . .

I’ve been losing weight. This is not intentional. Much as I’ve disliked the extra pounds I gained once I hit menopause about five years ago, all of which settled in my waist and hips, I’m still on the thin side.

A few weeks ago, I noticed that I could button a pair of old wool pants that had been too tight for years. Suddenly, they fit again. At first, I was delighted. Then I weighed myself and realized I’d dropped at least four pounds since the last time I had checked, maybe a month or so prior, and about eight pounds since last summer.

I mentioned this to my Boston Medical Center rheumatologist at a recent check-up. He said I didn’t show any evidence of an overactive thyroid—Graves’ Disease—which, among other things, makes you feel hot all the time. Certainly not the case. “Let’s keep an eye on it,” he counseled.

Teeth are crooked and her hair’s peroxide,
In the moonlight, she looks cross-eyed . . . 

Another week-and-a-half passed. I checked my weight again one morning and realized I’d lost another pound. This scared me. I called my local internist’s office to get an appointment.

“I’m not sure why I’m losing weight,” I explained to the nurse who answered my call. “Maybe it’s because of the extreme cold and my Raynaud’s? Maybe I’m burning a lot of extra calories?”

“I sure wish that would happen to me!” she exclaimed.

I didn’t know how to respond, even as I was expecting her comment. When I was in the active phase of scleroderma, decades ago, I could not keep weight on. Everyone I knew was jealous. No one was sympathetic.

But the reality is, maintaining weight can be as difficult a challenge as losing weight when your metabolism is messed up. And being too thin, especially with this disease, only chisels your face to an extreme caricature—and makes it even harder to stay warm.

My adult weight has fluctuated over time, like anyone else’s, to a high of 140 when I was pregnant, and a low of just under 100 when I was in the active phase of scleroderma and also dealing with lactose intolerance. Hovering around the 100 pound mark, I had to drink supplements to bulk up. They made my head and teeth buzz when insulin released into my system, and I hated it.

I’m nowhere near that low, now, but when the scale dipped to 113 ( I’ve been around 121 for longer than I can remember), an orange flag waved in my mind.

Bells on her petticoat tinkle in the breeze,
High above her bow-legged knees . . .

My doc ordered comprehensive blood work and a thyroid panel and instructed me to keep track of my food intake until our appointment. I complied, and when the labs came back (my local medical group offers patient access to select electronic medical records), I was relieved that all the results were in the normal range.

I went to see him the following week. As we reviewed the details, he confirmed that the blood work was fine, no indication of scary possibilities, like cancer.

But the mystery remained. Why have I lost this weight? Maybe my extreme cold weather theory is correct. Maybe it has to do with subtle diet changes—I’ve subbed low fat yogurt for instant pudding to coat my stomach when I take Ibuprofin twice a day. Or maybe I’m developing some intestinal malabsorption issues with my scleroderma.

The only way to find out? More tests. He enumerated the delightful options: More blood work! Stool sample! CT scan of my belly! A colonoscopy! And what difference would the findings make? Not clear. We looked at each other and agreed: Wait and continue to monitor.

All the things that people say,
Couldn’t keep us away!

So, that’s what I’m doing. I’m not worried as I was, before. My weight has stabilized for now. I feel fine, except for the fact that this winter is just too damn cold. Even as an old, nasty childhood ditty (thinner, thinner) seems stuck in my head, I’m just letting it roll. There are much better ways to occupy my mind, and listening to Bizet’s Carmen Suite as I write is a great place to start.

Meanwhile, if I feel like eating that extra Oreo, no harm done.

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.