Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

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.

Defrosting

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Was it really just last week that we emerged from the deep freeze? Monday afternoon, as dusk was settling, I took Ginger for a late walk and didn’t mind her noodling around, sniffing every other lamppost. This would have been unthinkable a week ago, as the ominously dubbed Arctic Vortex clenched half the country in its icy swirl.

Early last week, as temperatures hovered in the single digits, I barely emerged from my home. If Ginger wanted out, I opened and shut the door as quickly as possible, to avoid the frigid air. We switched over from our heat pumps to our oil burner, since the pumps don’t function efficiently below 10 degrees. My skin dried out. My digital ulcers erupted.

Now, following a delightful weekend in the 50s, my fingers are barely beginning to heal again. A new shipment of fabric bandages (I favor Coverlets, only available by mail order, for their softness and flexibility around my sensitive fingertips) arrived on time, thank goodness, because I was running through boxes of 100 far too fast.

With supplies replenished (I order 1,000 bandages at a time), I’m steeling myself for the next arctic onslaught. That’s right, it looks like we’re going back into the meat locker. The National Weather Service’s 14-day outlook predicts lower than normal temperatures for all of us east of the Mississippi. If you live in the other half of the country, you’re in for warmer than seasonal temps.

According to one hyperventilating summary of upcoming weather that I read, we could be dealing with icy cold into the beginning of February. The author quipped that it will be like those winters your grandparents remember.

This thrills me to no end. But then, I remind myself, this is New England, not the upper Midwest, where temperatures dipped to 40 below over the past few weeks. (My sincere condolences. Really. I cannot imagine surviving there.) Our favorite saying here is if you don’t like the weather, just wait a minute.

Time to get ready. I need to get my well-worn sweaters to the dry cleaners, so they are fresh once again. I need to drive my charcoal grey Prius through the car wash, to rid it of a thick coat of road salt that makes it looks as if someone clapped erasers all over a chalkboard (does anyone use these anymore?), before it gets so cold again that the water will freeze the doors shut.

Most importantly, I need to get my mind wrapped around the fact that I cannot do anything to predict or prevent extremely cold weather. It doesn’t really help to read 14-day weather outlooks, because it will all change, anyway. There is no way to know how whatever freezing cold will impact my hands further until it arrives.

A century ago, the great Antarctic explorer Ernest Shackleton kept his men alive for two year when their ship, the Endurance, became ice-locked and eventually sank on an aborted expedition to traverse the continent. One of the keys to his leadership success and their survival was to encourage his men to play—igloo building contests, dog sled races, singing.

Maybe that’s the best way to prepare for the next deep freeze—tune out the weather forecasts and tune in some great music.

Photo Credit: Sharon Mollerus 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.