Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Matters of Faith

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I find this time of year complex. It’s the transition to fall here in New England, with chillier mornings and ever-shortening days, a time when Jupiter shines clear and bright in the night sky by 8 o’clock and I’m never sure how many layers to wear, a time when my fingers go numb again.

It’s also a time of fresh starts—graduate school and senior year of college for our two daughters, and, for myself, a decision to place a higher priority on finding new markets for my personal writing.

Most of all, it’s a time of introspection, the Ten Days of Awe, between Rosh Hashanah and Yom Kippur, a period of reflecting on where I’ve been, where I’m headed, how I could do better by those I love, and my personal goals for the Jewish New Year.

To that end, I try to find something inspiring to read for the holidays. After rereading Moby-Dick over the summer, with its sweeping themes of the struggle between good and evil inclinations, I turned to a book with an intriguing, albeit chutzpahdik title, Proof of Heaven by Dr. Eben Alexander.

A New York Times best-seller for months, Alexander’s story is a compelling description of his near death experience from a very rare form of bacterial meningitis. As a scientist and neurosurgeon with extensive knowledge of the brain’s inner workings, he had always dismissed his patients’ reports of near death encounters with the afterlife. But his own severe and sudden illness, which shut down his neocortex (the part of the brain responsible for awareness), led to an out-of-body visitation with a supreme consciousness and worlds beyond this one that convinced him, upon his miraculous recovery, to tell his story to the world of God’s omnipresence and unconditional love.

Heady stuff. When I finished the book, I felt uplifted—that is, until the cynic in me kicked in and I began researching on the Internet. Sure enough, there have been plenty of critics, and Esquire totally debunked Alexander’s story in their August issue.

Oh, I thought with a sigh, I’m just a sucker. But the story still had the ring of truth to it—whatever Alexander’s alleged weaknesses and possible ulterior motives for writing the book, his account is consistent with the vast literature of near death experiences that describe encounters with a loving, all-encompassing One that needs no words to communicate, that is responsible for all Being, and that requires our partnership as humans to heal and complete this world, the only one we are capable of knowing.

So I moved on to a more substantive source, Art Green’s wonderfully complex and compelling book, Seek My Face: A Jewish Mystical Theology. I’m only a third of the way through savoring it. What fascinates is how Green, a leading modern Jewish theologian and fluid writer, captures the concepts that Alexander was trying to describe and places them within a solid Jewish textual framework.

He writes of a God (for lack of a better term) who both “transcends and surrounds the world” as well as fills it utterly, an Omnipresence, a supreme consciousness that is both apart from and deeply a part of us all. He wrestles with this Oneness and our sense, as mere mortals, of separateness and fragmentation, from God, from each other, from Nature, from Being. He reframes the question so many have asked throughout the millennia, “Why did God create the world?”:

Why is reality the way it is? Why does human consciousness experience itself as separate but bear within it intimations of a greater oneness? If all is one, on some deeper or truer level of existence, why do we experience life as so fragmented?

This is not a book of simple answers or assertions about the afterlife, but it is deeply moving and challenging. I have no brilliant insights to add to Green’s discussion, only more questions of my own, and a conviction that there is some kind of loving, pure presence that we all are a part of and a partner of. That faith, and the belief in the basic goodness of people, despite all the suffering and evil we see in this world, is central to my being and my ability to cope.

I had the privilege of being present when both of my parents died—my mother, in 1999, from a rare and very aggressive form of thyroid cancer, and my father, in 2009, from Parkinson’s. Each passing was profound. With their last breaths, I had the distinct sense, most strongly with my mother, that this was a passage to another state, one far beyond anything I could understand. Their mortal lives were over, but their souls had gone somewhere else. I carry that awareness with me and find it reassuring, albeit fleeting.

Living with chronic illness brings these questions and musings to the foreground. You are simply more aware of your own mortality, of the fragility of life, of the many ways our bodies can cease to function well. I do not know of any other way to deal with it all without faith, doubts included—however each of us defines it, whatever religious tradition or other faith practice each subscribes to.

Simply put, without faith, ever-evolving, ever questioned, ever more nuanced, I would be lost. To each and all of you, whatever your beliefs, I hope this time of fall’s transition is a blessed one, filled with peace, personal growth and good health.

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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.

 

Miracle Quest

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Twenty-six years ago this fall, I got on an airplane and flew to Pittsburgh to see Dr. Virginia Steen, one of the pioneering rheumatologists in the field of scleroderma research. She was kind, thoughtful and clear: I had systemic sclerosis, I was on a risky path, and I needed to start taking d-penicillamine (not to be confused with penicillin), an immunosuppressive medication that was, at the time, one of the main treatment modalities.

The drug was not without its risks and critics, and it has since been discredited in some of the medical literature as ineffective in treating scleroderma.

But you will never convince me of that. Six months after I started taking it, the wrinkles in my forehead began to reappear. Within a couple of years, the darkened, tight skin on my forearms had receded and my veins once again contoured the backs of my hands.

Most notably, I felt better—as if someone had switched on the light inside my brain that had been dimmed since my symptoms first emerged five years earlier. So much better, in fact, that I travelled back to the University of Pittsburgh and got Dr. Steen’s clearance to taper off the penicillamine, and, if I did okay without it, to try to get pregnant. I did, and I did, and our younger daughter is now 21.

Everyone’s course with this complex, debilitating disease is different. Better treatments have emerged. But I consider myself very lucky. When I saw Dr. Steen the second time, she told me she had believed when we first met that I was headed for a very difficult course. Had I not responded so well to the medication, I imagine I would be living, if still living, with severe disfigurement and many more complications.

I was recently thinking of Dr. Steen (now at Georgetown University Hospital in D.C.) after skimming through an online scleroderma forum. Someone had posted a question about her. I added my two cents’ worth. Many had shared similar, glowing anecdotes. A couple told angry, critical stories of their visits.

So much of dealing with this or any other complicated, chronic illness, depends on finding medical specialists you can trust. I’m fortunate to have had the resources to see Dr. Steen years ago and to live an hour’s drive from Boston Medical Center, with access to some of the best scleroderma specialists in the world. I’ve learned volumes from them and from my local rheumatologist, a man who has been treating me since 1985 and who understands the disease very well, but who also knows and admits the limitations of his own expertise.

In the scleroderma forum discussions, there is a lot of anguish, fear, pain. There are some very knowledgeable people who share good advice about managing the disease and all the information you need to track in order to manage your care. There are also many seeking miracles, people who distrust their physicians and look to fellow travelers for tried-and-true solutions.

Unfortunately, for some, that distrust is well-founded. Scleroderma is rare enough that there are still far too many internists and rheumatologists who aren’t well versed in its many symptoms and ramifications. Some patients get really bad advice and struggle to get an accurate diagnosis and appropriate treatment. Who else to trust but those who are also going through the same thing?

While some homegrown advice is useful, however, some of it is misguided. When you’re scared, without a solid understanding of the disease, it’s difficult to sort it all out.

As one who has benefited profoundly from expert medical care, I believe it’s essential to get help from knowledgable medical professionals who specialize in scleroderma. This is a select group, but they are worth the time, travel and expense to see. Both the Scleroderma Foundation and the Scleroderma Research Foundation in the U.S. provide resources to find local and regional scleroderma specialists.

There is no miracle cure for scleroderma—not yet. Both foundations are working hard to support research that will eventually lead to that cure. In the meantime, the real miracles, for me, are that I found a team of physicians who have helped me stay as well as I am able, that I have the loving support of my family and friends, and, above all, that my body, for all its malfunctioning, still works as well as it does.

That, and a good night’s sleep, are a lot to be grateful for.

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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.

Too Much Stuff

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My desk is out of control. This happens every few months or so, when I’ve been juggling  a variety of projects at the same time, and I have a pile for this, here, and a pile for that, there. After a while, the piles start crowding out any space in the middle, and I feel like I have nowhere to work or room to think.

Then I start moving piles to corners of my office. Problem is, the piles get dispersed, but I don’t make a decision about filing or tossing and the clutter remains unresolved. It just seems to follow the biblical injunction to be fruitful and multiply.

This proliferating clutter seems to mirror what’s going on in my life. I’m trying to do too much. I know this. I know I need to make some decisions about priorities and focus. I’m working on it. The trick is to keep this from becoming yet one more project that piles up.

I used to pride myself on my ability to multitask—the modern-day badge of honor, especially for women who juggle family and career. It’s an important skill-set, sometimes crucial for getting through the day. But there is growing evidence that multitasking isn’t necessarily such a virtue. In fact, multitasking can actually reduce productivity by up to 40 percent.

It can also be fatal—as in texting while driving.

The older I get, the more I want to declutter—my desk, my to-do list, my home, my mind. I want to eliminate the stuff that isn’t necessary and concentrate on what’s really important. I want to be able to focus on one thing at a time and give it my full attention, then move on to the next. Quality over quantity.

Essential for any well-lived life, but all the more so when you are managing a chronic disease, spend too many hours in doctor’s appointments each month and want to make the most of the time you have, especially those days when you’re feeling strong and alert and have energy in reserve.

Where to begin?

It seems that whenever I clear my desk, I begin to clear my head. I’ve also found that making a series of small adjustments over a longer period of time—rather than undertaking a major, exhausting purge—adds up to a significant, nuanced change of habit.

So my goal is to pick one pile, one drawer, one small corner to declutter each day—a small project that takes only about 10 minutes. Over the course of a week or a month, I hope to clear my space and clarify my priorities.

The Jewish High Holidays come early this year, the first week of September. The weeks leading up to Rosh Hashanah, the Jewish New Year, are a time for reflection and introspection—how to do better, be better, mend what needs tending and start afresh.

There’s a lot more to it than clearing your desk. But that’s as good a place to start as any.

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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.

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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.

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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.