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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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body-mind balance

High Wind Warning

Evelyn Herwitz · February 26, 2019 · Leave a Comment


Monday morning. I awake to wind, rushing and subsiding, like an angry tide. A quick check of the weather forecast on my phone reveals high wind warnings all day, with gusts over 50 miles per hour throughout the afternoon. I have to drive into Boston for an evening class. I imagine a tiring commute, fighting the wind, but am determined to go, despite plummeting temperatures.

As I make the bed and bandage my chronic thumb ulcers, I listen to the The Daily podcast by the New York Times. Today’s topic: whoever controls the incipient 5G network, which will integrate all things hooked to the Internet—self-driving cars, smart TVs, home security systems, communications networks, the power grid, artificial intelligence, our brains—will basically control the world. This is the new Cold War. The wind howls outside. I sit cross-legged on the floor, try to quiet my mind and meditate.

While cooking oatmeal and boiling hot water for tea, I call the lab that has sent me two invoices for recent bloodwork stating that we owe $150 because the claims were rejected by our insurance. This happened while our COBRA administrator had not yet told our insurance company that we had renewed our policy back in January, so I have to get the lab to resubmit.

I work my way through their phone tree until I reach the customer service line, which promptly puts me on hold. I put the call on speaker and stir the oatmeal. Winds rush through trees and around corners. I sit down at the kitchen table, sip my tea and begin to eat my comfort food. Peppy music crackles through the phone, interrupted momentarily by a male voice: We apologize for the delay. A customer representative will be with you soon. Your call will be taken in the order it was received.

Over the cycling music, another male voice cheerfully ticks off all the possible lab tests I could consider: prenatal screening with a non-invasive blood test that could inform expectant parents of any chromosomal abnormalities at ten weeks, an eight year risk analysis for diabetes, a comprehensive heart health profile. I wonder about lab test results in a world of 5G interconnectivity. Who will have access to what about me in the future? Who does already?

Eight minutes in, a woman takes my call. She asks for the invoice number, my name, address, insurance policy ID, group ID (name, rank, serial number). I answer. She goes silent. The wind rushes outside the kitchen windows. She tells me to disregard the invoices and that the claims will be resubmitted. I hang up, finish what’s left of my oatmeal, rip the invoices in half and text Al the good news.

I think about the bits of data shooting from my fingers through the Internet to his phone. I think about the digital footprint of this blog, drifting forever in cyberspace. I think about a video clip of three horses galloping away from a swirling wind turbine, seconds before it disintegrates in a powerful storm. As I type, the evergreen boughs of the yew beyond my office window chop and sway in the rushing wind.

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: Benny Jackson

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, meditation and disease management, mindfulness, stress

Excuses, Excuses

Evelyn Herwitz · December 4, 2018 · 2 Comments

My desk is a mess. So is my office. Stuff is being fruitful and multiplying when I’m not looking. Honest.

I blame this cluttered state of affairs on my hands. It’s hard to pick up piles of paper and sort and file, because I’ll inevitably bang my fingers. There’s not enough room to properly store my books. I need to have that stack here and this stack there for easy reference. Right.

Then again, I like having lots of interesting stuff around me when I work. There are my little turtle statues to play with. And a bronze T-Rex that I got when I was maybe five years old at the Museum of Natural History in New York. And a cube that I can rearrange to show various paintings by Edward Hopper, depending on my mood.

Of course, I must have at least two pens nearby and a red marker and yellow highlighter and pencils to keep track of my work progress in my handy Bullet Journal. (Yes, I’m addicted.)

And how can I NOT have that pile of reference books on the side of my desk? Or those mail solicitations that I need to remember to follow up? Or those really cool beads that I bought on sale last week to string into a necklace?

Then again, it would be nice to have a clear space in front of me and to get rid of those papers I really, really need to shred, already. And move that stack of old files to the cabinet in the basement. And make some decisions about what stuff is truly necessary.

Al has offered his hands to help anytime. Maybe when I can no longer move in here, I’ll take him up on it.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hands, mindfulness, resilience

Standard Time

Evelyn Herwitz · November 6, 2018 · Leave a Comment

So, we set the clocks back this weekend, and the days feel much shorter—even though the amount of daylight is actually only a few minutes less than it was before. It’s all relative. How you perceive length of days depends on  how the rising sun and impending darkness encircle your waking, working, active hours.

Even as I know this, the shift to an earlier sunset always feels claustrophobic. My body has to adjust. The older I get, the less I’m convinced that switching the clocks is really necessary. It’s an artificial imposition on nature’s true rhythms.

But this is just howling at the moon. I try to remind myself that our reversion to standard time also means that in a few weeks we will arrive at the winter solstice, and the days will grow longer, once again.

The earth spins, the pendulum swings, the tides ebb and flow. Election Day has finally arrived, and tomorrow, whatever the outcome, the sun will still rise and set. I try to remind myself that the longest nights eventually give way to more daylight. I try to remind myself that change is the only constant.

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: United States seen from orbit photo by NASA

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Filed Under: Body, Mind, Sight Tagged With: body-mind balance, mindfulness, resilience

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

Refreshment Break

Evelyn Herwitz · October 16, 2018 · 2 Comments

I made myself take a walk Monday afternoon. It was short, just around the block, but I got outside. It feels like fall, now, damp, chilly, and I need to get acclimated to the change in seasons. I’m back in sweaters and warm pants and thick socks, my long coat, hat. I wore mittens over the weekend.

It’s all too easy to make excuses to myself to stay inside when the weather turns. It’s too overcast. It might rain. It looks dreary. I don’t want my fingers and face to get numb.

So my short walk was a good reality check, as well as a much needed breath of fresh air. Even as it was overcast and had been pouring earlier in the day, the rain held off. The air smelled sweet with the tang of humus. My joints limbered up. My mind brightened from a jolt of oxygenated blood.

It was also good to see the neighborhood beyond my computer screen. Trees are turning late this season in Massachusetts, due to a warmer-than-normal summer and early fall. Usually we’re at peak foliage right around Columbus Day weekend, but this year green still predominates. Only the sugar maples, so far, have begun to flame and shed their leaves.

Pumpkins, plastic tombstones, skeletons and fake cobwebs decorate a few neighbor’s lawns, but the Halloween craze of a few years back seems to have ebbed. That’s fine with me. More than ghosts and goblins, there are quite a few red, white and blue signs promoting political candidates for the upcoming November election. That’s fine with me, too.

A new neighbor’s house has been repainted; that neighbor’s repairs are complete; another’s is in progress, with boards hammered over the front door. Al decorated our front steps with mums, pumpkins, gourds and cornstalks over the weekend, and I’m pleased with the result as I walk up our drive.

Back inside, I realize my fingers and lips have gone slightly numb. But it’s warm in the house, and I feel refreshed. Worth repeating.

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.

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Filed Under: Body, Mind, Sight, Smell, Touch Tagged With: body-mind balance, how to stay warm, managing chronic disease, Raynaud's, resilience

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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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