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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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stress

What I Want

Evelyn Herwitz · October 30, 2018 · 4 Comments

I want to write something positive, but I’m having a hard time. The events of the past week and weekend are weighing heavily on my mind, and to pretend otherwise would be disingenuous.

Back in the ’70s, when I was in graduate school at Carnegie-Mellon in Pittsburgh, I lived in Squirrel Hill. I was not involved in Jewish life at that time, but I remember the community fondly, as an intimate, comfortable urban neighborhood where I felt safe walking any time of day or night. I received my master’s degree in public management and policy analysis from what is now the Heinz College at CMU, at a graduation ceremony in a synagogue near the university—not the site of Saturday’s massacre, but a few blocks from there.

It is heartbreaking to comprehend what happened at the Tree of Life Congregation Synagogue on Shabbat. Just as it’s terrifying to comprehend that a dozen-plus pipe bombs were sent to critics of the president last week. Thank goodness the bombs never exploded and that the alleged bomber was quickly apprehended. So much violence that the fatal Kentucky shooting last Wednesday of two people of color by a white man who had been unable to enter, and presumably attack, a nearby, predominantly black church was barely noted by the national media

I could tie these events and so much other bad news (climate change, anyone?) thematically to the issue of stress and how it affects health, so that I could relate it more directly to the focus of this blog. But what’s happening to us in America today is about much more than that. So much that I have taken for granted about our democracy feels like it is unravelling. It seems as if we have reached some monstrous tipping point, and that more blood will be shed before we get through these dark times.

I try to remind myself that I grew up in the ’60s, when there were riots in the streets, we practiced duck-and-cover in grade school against the threat of nuclear attack, the Vietnam War was raging, and political leaders were assassinated. Our nation survived all that. Somehow, we have to get through this, too.

I want to live in a country that champions empathy over narcissism, that respects the rights of individuals without shredding civility, that prizes heart over hate. I want fair and free elections. I want the voices of calm and reason and hope to prevail over the voices of anger and fear and divisiveness.

I have to believe we are all better than this. As of this writing, a group of Muslim Americans has raised more than $130,000 to help Jewish victims of the Pittsburgh synagogue massacre. This is the true spirit of America. This is the America we need to cherish and support and strengthen.

Election Day is one week from today. Please. Vote. The health and future of our democracy depends on us 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. Please view Privacy Policy here.

Image Credit: Zoran Kokanovic

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease, resilience, stress

Storm Tracking

Evelyn Herwitz · March 14, 2017 · Leave a Comment

I’ve been staying indoors for much of the past few days. First, we were hit with single-digit, bitter cold and wind. It’s sunny out as I write on Monday afternoon, but still too cold for a much-needed walk. And by this time on Tuesday, I expect to be watching snow swirling and piling all around as a Nor’easter sweeps up the coast. We’re due for 12-18 inches, maybe more.

So much for gliding into spring.

My hands have certainly had enough. Four fingers on the right hand, three on the left, bandaged up because my ulcers and cracked skin won’t heal in cold, dry air, even with the heat on and plenty of clothing layers. I really wish I could use one of those Sick Bay gizmos on the original Star Trek, wave it over my hands and make the ulcers go away.

I wish I could do the same to solve the terrible discord in our country. I read and read and read, trying to stay on top of all the news without driving myself insane. Staying informed is the essential first step. Balancing how to manage my health and energy and anxiety level as I debate how to get involved in preserving our democracy has become a major preoccupation.

What to do? What to do? When we were kids, my older sister used to write comics with a stick figure girl (you could tell because she had a triangle for a skirt) who would ask that question and then, in a lightbulb flash, always declare I have it! with a ready solution to the dilemma. I can’t recall any more of the story lines, but they always made me laugh.

No quick solutions to our national crisis of conscience, no magic tricorder for my hands, no way to avoid a Nor’easter hurtling our way. Nothing to do but sit and watch the snow fall. I will remind myself to be grateful for our warm house and secure roof and full cupboards, for doctors who care about me and insurance to pay for it all. I will give myself permission to plan my personal political commitment in my own time, rather than over-reacting to the outrage du jour. And I will seek comic relief.

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.

Image Credit: Jude Beck

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hands, managing chronic disease, mindfulness, Raynaud's, resilience, stress

Election Season Survival Kit

Evelyn Herwitz · March 1, 2016 · Leave a Comment

12522068044_b73c88f4e9_zToday is Super Tuesday, and here in Massachusetts I’m headed to the polls to cast my ballot in the Presidential Primary. I’ve become a political junkie this election season. So much hangs in the balance for our country.

I do my best to keep on top of political news and analysis, but being a responsible citizen is also raising my blood pressure and keeping me awake at night. This is not good for anyone, whether you have scleroderma or not.

So I’ve discovered a few antidotes to election season stress, which I share with you, Dear Reader, in the hopes that we all can keep our sanity while doing our civic duty, staying informed and voting:

  1. Get the facts. Forget the misinformation, innuendo, insults, lies, Twitter rants and Facebook memes that have characterized this race so far. Find a reliable source of balanced reporting that goes beyond hyperventilating pundits and hysterical headlines. I recently discovered Nate Silver’s 538 website, which provides insightful, nuanced election analysis through a careful examination of polling data. It’s solid reporting. Reading their posts each morning helps me breathe and stay focused.
  2. Exercise. There is nothing like a walk in fresh air to clear my head of election season angst—that, and my Pilates class, or walking the indoor track and riding the bike at the gym. I can’t recommend it highly enough, whatever your favorite form of exercise. Just do it.
  3. Listen to great music. When I feel like I’m getting too wound up or depressed about the latest outrageous political headline, I immerse in wonderful music. Here’s one of my favorites, Gershwin’s Cuban Overture, performed by Lorin Maazel and the Cleveland Symphony (click on the link if you can’t see the embedded video):
  4. Watch Fred Astaire dance with Ginger Rogers. Simply the best, guaranteed to make you smile, regardless of what’s weighing on your mind, political or otherwise. Here’s a number from their 1936 classic, Swing Time, a great tap dance to “Start All Over Again” (again, just click on the link if you can’t see the video here):
  5. Look for the good in others. Despite all the darkness and truly depressing news we hear every day, and all of the candidates’ dire predictions about the future if we don’t heed their warnings, there are still good people out there doing good things. Keep perspective with a dose of positive stories from sites like David Freudberg’s Humankind.

None of this is to say we shouldn’t take this presidential election seriously. This is certainly the most important presidential race of my lifetime, one that will define the direction of this country for years to come. It’s never been more crucial to be an informed citizen and participate in the electoral process.

But it’s also essential not to get swept up in all the Sturm und Drang—especially when you’re managing a chronic disease like scleroderma that’s exacerbated by stress.

Hope this helps. And God bless America. Please.

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.

Image Credit: DonkeyHotey via Flickr Creative Commons

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease, mindfulness, stress

The Stress Factor

Evelyn Herwitz · March 18, 2014 · 4 Comments

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

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Filed Under: Body, Mind Tagged With: anxiety, disease onset, managing chronic disease, Raynaud's, resilience, stress

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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