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Reflections on the Messy Complexity of Chronicity

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The Poppies Grow

Evelyn Herwitz · November 13, 2018 · 6 Comments

Sunday dawned sunny and brisk here, one of those sharp-shadowed November days when the light accentuates every ridge of bark and edge of brick like a finely detailed etching. I bundled up in multiple layers and headed downtown for our city’s annual Veteran’s Day parade, not out of habit, but because this was no ordinary November 11. It marked the 100th anniversary of the end of World War I, and I wanted to be present.

For the past few years years, I have been working on a novel set in the Great War, in 1915, and my research has given me a deep respect for the tremendous sacrifices made during that horrific conflagration, as well as for the ways in which the Treaty of Versailles that redrew post-war boundaries on three continents shaped so many of the geopolitical conflicts that we face today.

Four summers ago, Al and I traveled to Europe so that I could gain a stronger sense of place for my novel. We walked overgrown trenches, witnessed corroded but still live munitions that continue to emerge from Belgian soil (the so-called Iron Harvest), paid respects to row upon row of white grave markers in military cemeteries, discovered delicate red-orange poppies waving in Flanders Fields. They flourish in old battlefields because they favor earth that has been disturbed.

And the earth was disturbed, shredded, pounded to a muddy, barren pulp. Millions upon millions died defending, gaining, losing, regaining mere yards of turf between the trenches. In the end, the so-called peace treaty for the War to End All Wars imposed such economic hardship on Germany for its aggression that Teutonic desire for revenge set the stage for World War II.

I thought about all this as I watched the bag piper stride beneath an archway made of a huge American flag held up by two opposing fire truck ladders, as a handful of aging Marines in their red jackets and caps passed me carrying the Stars and Stripes, as units of JROTC high school students marched by in uniforms, as police rumbled past on motorcycles. The crowd was thin but respectful. A little girl handed me an American flag to wave. My fingers went numb every time I took a picture, because it was just that kind of chilly New England fall day.

The parade culminated at a memorial to World War I veterans that marks one of the entry points to the city’s downtown. I had passed it many times over the years, but never actually entered—a semi-circular granite wall engraved with the names of battles where Americans died in the War’s last year, surrounding a modest plaza with a flagpole. The mayor spoke of local residents who served and died in the War. He drew parallels between then and now and the divisive, dangerous politics of our times. Other city officials made a few remarks and laid a red-white-and-blue wreath at the flagpole’s base. A soldier read In Flanders Fields by John McCrae.

When we were in Belgium, we visited the site of the field dressing station where Lieutenant Colonel McCrae, a Canadian surgeon, artist and poet, saved soldier’s lives and wrote his famous memorial lines. That is where we found the poppies, still growing. They were wild, scattered amidst the high grass, smaller than I had expected.

McCrae’s poem ends thus: “If ye break faith with us who die | We shall not sleep, though poppies grow | In Flanders Fields.” On this centennial, with so much at risk in the world, I hope and pray that we can remember the somber lessons of World War I, the tremendous sacrifice of life, the hardships and grief and loss, and find our way through this difficult time to true and lasting global trust and cooperation for the betterment of all. Nothing less than the future of our planet hangs in the balance.

Poppies in Flanders Fields, Belgium

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, Hearing, Mind, Sight, Touch Tagged With: hands, how to stay warm, mindfulness, resilience, travel

Wild Goose Chase

Evelyn Herwitz · October 23, 2018 · 4 Comments

Canada geese can be a nuisance, crowding public green spaces, spackling parks with poop. But they can also be magnificent. I always love watching them fly, honking signals to form their undulating V. Strangely, I haven’t heard them yet this fall, migrating south, but I expect to, soon, as the days grow noticeably colder.

Those geese may be wild, but they are certainly organized. I cannot say the same for our local CVS pharmacies last week, as I tried to chase down a refill on a prescription to keep me warm.

Now, this medication is a vasodilator that I need to control my Raynaud’s. It’s a key part of my regimen year-round, but all the more important as temperatures drop. When I realized I had only three pills left early last week, I ordered my final refill on this particular prescription via my CVS iPhone app Sunday night. Normally, I get a confirmation text that the refill is in process (which I did), and then another text when it’s ready for pick-up within 24 hours (which I didn’t).

Hmmm. Time to follow up with a phone call. The pharmacy staff who answered the phone on Tuesday told me it was on order and would arrive later that afternoon. Fine. On Wednesday (one pill left), I received a text that a refill was ready for pick-up. So I went to the store, expecting to get my scrip and be on my way.

However, as it turned out, the refill was for a different med, one that I actually did not want refilled (it was on autopilot and I didn’t catch it in time). The medicine I needed was still on order. I inquired why. So it turns out that my local CVS did not have any of the required pills in stock, and none were available from the manufacturer (what?), and only one other CVS in the city had any. The clerk transferred the prescription to that store, so I wouldn’t lose any more time (theoretically), and I went home.

By Wednesday afternoon, still no text that the scrip had been filled. Hmmmm, again. I looked up the address of the store in question and discovered that there were two different stores on the street she had mentioned. So I called both. Had they by any chance receive my prescription? Nope. Even if they had (they could see it in the system) there was a problem. Why? Because my scrip was written for the generic version of the drug, not the brand name. And no CVS in the entire city had the generic pills in stock. I was directed to yet another CVS, on a different city street, that had the brand name showing up in the computer.

By this time, I was getting pretty annoyed. Already it had taken me more time than I had available to track this down. And it’s not an unusual drug. There was not one, not two, but three CVS stores on the newly designated street, according to my Internet search. I picked one and called. This time, I got lucky (or so I thought). The pharmacy clerk told me that they had my medication, but the problem was that my prescription had to be rewritten only for the brand name, and not the generic as an option.

Are you still with me? Aargh! I called my local rheumatologist’s office and got hold of one of the nurses who knows me. She readily took care of the new prescription and assured me she would put it under my doc’s nose as soon as he finished with a patient. Twenty minutes later, the pharmacy called back. They had the prescription, but it was still written incorrectly. There could be no mention of the generic on the scrip, only the brand name. Good grief. I called back my doc’s office, got another nurse on the line, who promised to straighten it out and get back to me when all was set, which she did by that evening.

The next day, Thursday, still no text that the scrip had been filled. I was out of pills by now. So I called the pharmacy to see what had happened. A different pharmacy clerk named Cindy answered the phone. I explained my dilemma, trying unsuccessfully not to get agitated. She calmed me down and found all the information. Apparently, they did not have the drug in-house, but she promised to order it right away from the warehouse, and expected delivery the next day. “Call me by noon to check in,” she said in a motherly voice. Thank you, Cindy, for being human.

I didn’t make the call because I got another text on Friday morning, telling me that the scrip was filled. After a client meeting downtown, I double-checked my app. Once again, it was the drug I didn’t want, still waiting for me at the original CVS (even though I had told them I didn’t need it). I called the new store to check on my quest. A different clerk answered and found out the pills were there, but my scrip was not yet filled, so she would ask the pharmacist to move it to the front of his orders.

I drove across town and found the store, a small, old CVS with a tiny parking lot, then waited at the pharmacy counter for another person to finish buying what looked like a dozen bags of pills. But when it was finally my turn, hallelujah, the scrip was filled. Not only that, but the young woman (not Cindy) who served me, who turned out to be the Wednesday clerk on the phone who had said the pills were in stock two days earlier, recognized my name and apologized for her mistake, due to an inventory error (not her fault) in their records. She was so pleasant, so committed to making my experience a positive one, that I might just leave that prescription at this out-of-the-way CVS pharmacy, despite the inconvenient location.

Wild goose chase, indeed. Any flock of Canada geese that had set out for their southern nesting grounds the day I first put in my order were probably long settled somewhere nice and warm by the time I got my pills. Thanks to some thoughtful individuals who believe in old fashioned customer service, I’m a bit warmer, now, too.

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: Jessica D. Vega

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Filed Under: Body, Mind, Touch Tagged With: finger ulcers, hands, medications, Raynaud's, resilience

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

Progress Report

Evelyn Herwitz · October 2, 2018 · 4 Comments

A year ago today, I was two weeks away from my second hand surgery to repair damage from severe ulcers in five fingers—damage that had exposed bone and broken two of my knuckles. My left index and right pinky were held together by steel pins, and I didn’t know if I would lose them in the next procedure. My hand surgeon felt that skin grafts were worth trying, but we didn’t know if they would heal properly. He had warned me at the outset that these were the first of many surgeries.

What a difference a year makes! I’ve been extremely fortunate. A gifted surgeon, excellent wound care and 60 dives in a hyperbaric oxygen chamber, plus effective occupational therapy sessions (and health insurance to cover it all), combined with a lot of support from family and friends enabled me to heal.

And I am cooking again. Al had picked up the slack in the kitchen for well over a year, ever since the ulcers became too painful for me to handle any utensils. He cooked up some great meals and discovered that he really enjoyed experimenting with new recipes. I was grateful for all that good and healthy food.

But a part of me missed cooking. It’s never been a major focus in my life. I don’t spend hours pouring over cookbooks and savoring the thought of new recipes. However, I do like making a good meal, especially for the holidays. It’s exhausting, but satisfying to turn out a gourmet, multi-course dinner. It gives me pleasure to prepare food that brings others enjoyment.

At some point over the summer, I began baking bread again for our Friday night Shabbat dinners. Al had gotten quite good at this, and he was deservedly proud of his delicious braided loaves, but he was happy to have me pick it up again. I also was able to help clean up after meals, which had been impossible with the ulcers and ensuing surgery.

The Jewish New Year, Rosh Hashanah, arrived just a few days after we came home from Europe last month. I knew it would be too much to have a big crowd, so we just invited a few close family members for the first night. But, to my and Al’s surprise, I was able to do most of the cooking myself. He served as sous chef, cutting vegetables. Even still, I was able to handle the chef’s knife and do a lot of prep myself. Everyone enjoyed the meal, and I felt like I had crossed the finish line.

I have been doing most of the cooking ever since, although I still have to be careful. I developed an ulcer in one of my skin grafts shortly after we returned from our trip, but I think this was actually caused by some calcinosis lurking just under the surface. It is gradually healing. Al is enjoying a well-earned reprieve, although I recruit him for help as needed.

Mostly, I’m amazed and extremely grateful that I can actually do so much with my hands again. It’s taken all this time to relearn how to use them, and I certainly have my limits. But it’s wonderful to see that, despite all the challenges, my body can truly heal.

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, Taste, Touch Tagged With: body-mind balance, calcinosis, finger ulcers, hand surgery, hands, managing chronic disease, resilience

Just Breathe

Evelyn Herwitz · September 25, 2018 · 2 Comments

This past Friday morning, I had double-header appointments at Boston Medical, an echocardiogram followed by a routine appointment with my wonderful rheumatologist, who has been my specialist for at least two decades, now.

My last echocardiogram was done a couple of years ago, one of those tests I have to repeat occasionally to monitor signs of pulmonary arterial hypertension (PAH), a late-stage complication of scleroderma. The only symptom, so far, is extreme shortness of breath if I commence intense aerobic exercising without a serious warm-up. We’ve been watching this for years, now, and I’m on prophylactic medication that seems to be protecting me from worse complications.

Most of the time, the test doesn’t bother me. It’s non-invasive, and, depending on the tech, just mildly uncomfortable. Like I said, depending on the tech. This time, let us say, it was more challenging.

First, the easy part. You lie down on your left side, with your head on a pillow. The lights are dimmed so the tech can see the computer screen more clearly. A transducer, which looks like a short, hand-held rod with a gel-covered rolling ball on top, is pressed against your ribcage, neck and diaphragm, to send high frequency sound waves through your chest wall. It’s like an ultrasound for your heart. The sound waves bounce back to the computer, which translates them into moving pictures of your heart muscle. Occasionally, the tech will turn on the audio, and you can hear your heart beating away, kind of a squishy, pumping sound that seems to reverberate from a deep well.

Now for the hard part. You have to hold your breath during certain parts of the test, so that your diaphragm doesn’t cause your heart to move around and your lungs aren’t so full that they interfere with the heart imagery. I’ve never had an issue with this in the past, but my tech on Friday had a very specific way that he wanted me to empty my lungs, first, and then take in only a small sip of air. Then hold. And hold. And hold. While he pressed really hard with the transducer on my ribcage. I have no padding there. It hurt. And I couldn’t wave my hand or ask, “Can I breathe now?”

I really started to wonder, at a few points, if I would actually be able to hold my breath long enough. Fortunately, each time, just as I thought I wouldn’t make it, he said I could breathe again. It was also reassuring to hear my heart beating when I felt like my lungs would burst. “You’re doing great,” he said. I guess so. Test results will be available this week.

By the end of the half-hour, I was very glad to get dressed and head over to the Rheumatology Department. The sun was bright, the air crisp. As I caught up with my rheumatologist, who, like me, is in his sixties, we chatted briefly about retirement. To my relief, he has no plans of retiring anytime soon. This time, I needed no permission to breathe.

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: Eric Witsoe

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Filed Under: Body, Hearing, Mind, Smell, Touch Tagged With: managing chronic disease, pulmonary hypertension, 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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