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Reflections on the Messy Complexity of Chronicity

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Taste

#19

Evelyn Herwitz · May 13, 2014 · Leave a Comment

Friday afternoon, Greenwich Village. Al and I squeeze into two remaining back row seats of a tiny, darkened theatre at the IFC Center just as the previews end. The acclaimed documentary is Manakamana, a mesmerizing character study of pilgrims traveling to and from a Hindu temple in Nepal via cable car. This is first on my list of things to do on our big weekend celebration of my 60th birthday and Mother’s Day. I’ve been looking forward to this trip for weeks. And I have a toothache.

Central Park Bass 5-11-14I have a rare complication of scleroderma: The roots of some of my teeth are resorbing. So far, I’ve had a couple of back molars extracted and a front molar replaced with an implant. My dentist and periodontist have been monitoring the relentless deterioration of several other molars, since. The worst one, lower left, has been hanging on for five years, occasionally oversensitive to cold, but manageable. If it had a name, it would be Grumpy. But it only has a number, 19.

A few days before our trip, 19 was acting up. I assumed it would calm down with careful tending, per usual. But as we drove closer to NYC Friday afternoon, the twinges were becoming more persistent. I tried to ignore it.

A couple sits shoulder to shoulder in the cable car. He wears a traditional peaked cap, shirt and vest, and carries a live rooster. She wears a red blouse and necklace of green beads. Her face is shriveled. She leans with her arm over the back of the seat, exhausted. He checks his watch. As the car rides higher and higher above terraced corn fields and sal forests, she brightens. It’s fun to go to the temple, she says. It’s good to go out when you can.

As we leave the theatre, I realize that not only is 19 aching, but the pain is also traveling into my left ear. I can’t believe this is happening. I’ve come prepared with my pharmacopia of meds, but I don’t want to deal with a rotten tooth on my birthday weekend. It’s drizzling. We sit on a bench outside a bakery to sort out options. I don’t want to ruin everything we have planned, and I certainly don’t want to waste time in an ER or try to find a dentist who may not take our insurance. So we agree that I’ll try to manage the pain with my meds, wait and see.

Later that night, after a great meal (despite 19) of wine and risotto, enhanced by Al’s magical ability to find interesting people (across from the cafe, at an artist’s opening in a church gallery, we shared Shabbat candle lighting and kiddush), I lay awake, unable to sleep in strange surroundings. My mind travels back to the film.

Three young long-haired men, all dressed in black, joke and fiddle with their digital cameras and cellphones as the cable car travels up to the temple. It feels like we’re going up steps, says the one in the middle. My ears keep popping. They pose for each other’s selfies and play with a scrawny kitten. People ski on hills like this in other countries, says another. What if the cable broke and we fell, laughs the third. 

Despite a fitful night, I get just enough sleep to go ahead with our plans for the day. So far, 19 is achey but manageable. It’s warm and the sun is shining. We attend Shabbat services at B’nai Jeshurun on the Upper West Side, then take a long stroll through Central Park, watch turtles sunning by a pond and wander through the Shakespeare Garden. I lie down on a bench while Al explores. People row on the lake, others play softball. Horse-drawn carriages clop along the road. The skies open up and we take refuge in the Museum of Modern Art–Al’s first-ever visit. I’m weary but elated to view these stunning works once again and watch Al’s enthusiastic response.

It’s still raining when MoMA closes, but we find a great restaurant right next to the Broadway theatre that is our final stop for the evening. I’m revived by the meal and we finish just in time to pick up our tickets for After Midnight, a revue of Cotton Club jazz from the ‘30s, starring Vanessa Williams. The music, singing, tap dancing, costumes are spectacular. Even from the very last row of the rear mezzanine, we can see everything perfectly. Exhausted, I sleep through the night, grateful that 19 has not gained the upper hand.

Three women sit in the cable car, dressed in bright colors and beads, their hair white, their faces gnarled like the bark of ancient trees. They talk about how their husband couldn’t come because he twisted his ankle while carrying a bucket of water he had drawn. They nod and look out the glass windows of the cable car, admiring the view. Life is so much easier than it used to be, one says. We had to struggle to survive.

Sunday is warm, beautiful. We enjoy a hearty breakfast in a little cafe, a stroll to the East River, and then head to the Brooklyn Botanical Garden for a glorious walk beneath blossoming cherry trees. Next door, at the Brooklyn Museum, we immerse in the works of dissident Chinese artist Ai Weiwei and so much more. I make sure to take my pain meds on time, to keep 19 in check. We reluctantly depart for home when the Museum closes its doors at six.

On Monday, I call my dentist and get a late afternoon appointment. The x-ray tells the story: There is a round gray shadow over the molar’s left-branching nerve. The resorption has exposed it. Nineteen has to go. It will take six to nine months after the extraction to complete the implant. Not surprised, I accept the bad news reluctantly, rub my achey jaw and drive home. At least the procedure will get split between this year’s remaining dental insurance and the next.

Two men sit in the cable car, each holding a stringed instrument and a bow. The older one looks out the window and recalls walking over the hills below to get to the temple, before there were even paths. We should tune up, he says to his younger companion. As the cable car descends, they watch treetops pass while playing a rhythmic folk melody, round and round and round.

 

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, Hearing, Mind, Sight, Taste Tagged With: body-mind balance, managing chronic disease, resilience, tooth resorption

Six-Oh!

Evelyn Herwitz · April 22, 2014 · 2 Comments

It’s official. I’m now in my seventh decade. Last Friday was my birthday, the big 6-0.

hydrangeasI’ve actually been looking forward to this milestone. First of all, 60 doesn’t seem nearly as old as it once did. Funny how that works—when you finally get here, the view is longer, deeper, more nuanced, not the caricature of feebleness that I envisioned when I was young. (Of course, my twenty-something daughters have had a field day, teasing me about senior moments. Mostly, I’ve laughed.)

Second of all, 60 feels like an accomplishment. I’ve been living with scleroderma for more than half my years, now. It is certainly wearing, exhausting and painful at times, frustrating, angering to feel gradually more limited in how much I can do with my hands or accomplish in a day. Each year brings new medical challenges.

But I’ve beat the odds on longevity and developed strong coping skills and plenty of resilience. I may have achieved this, anyway, with age, but I believe this complex disease has also taught me a lot about patience and persistence that I might not have learned otherwise. For a 60-year-old with scleroderma, I’m doing damn well, thank you very much, and I intend to do my best to keep it that way, whatever this disease throws my way.

So, I was looking forward to a celebratory day off on Friday, devoted to art—my own fiction writing and a trip to the Worcester Art Museum.

My body, however, had other ideas. Thursday afternoon, on my way home from a routine check-up with my Boston Medical rheumatologist, my joints began aching and I was flashing hot and cold in the car. My stomach had been irritated all day, from, I assumed, too much matzo for Passover.

I ascribed the joint pain to skipping my Ibuprofen due to the irritated stomach. After a light meal, I felt a bit better. That is, until evening, when I was dozing on the couch and suddenly felt like I was going to pass out. Thankfully, Al was home to help.

And that is why I spent my birthday flat on my back, sipping only water, trying to let my GI tract heal from what was by then, obviously, a virus. This was not the day I had planned.

I was determined, however, not to let a most unwelcome stomach virus ruin everything. So I wrote on my laptop and finished revising a short story that had been languishing for more than a year. That, plus greetings and gifts from family and friends, two beautiful hydrangeas that Al had brought home the night before and a cuddly stuffed turtle that he gave me that evening (nothing like being babied when you’re feeling crummy) helped to salvage the day.

I’m writing on Sunday, sitting at my desk again, able to eat very bland foods, looking forward to joining a group of good friends for dinner tonight as we begin the last two days of the Passover holiday. The art museum is closed for Easter Sunday, so I’ll postpone that visit a bit longer, keep it as something to look forward to. In May, Al and I will celebrate my birthday with a weekend in Manhattan.

Much as I wish it had all gone differently, somehow, it seems, this is what 60 is all about—taking the imperfections in stride, making the most of each day, whatever your state of health, appreciating the love of family and friends. And, for me, making art. Time to get over the fear-of-rejection hurdle and start sending out those short stories for publication.

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, Taste Tagged With: body-mind balance, managing chronic disease, resilience

Skirmishes

Evelyn Herwitz · April 15, 2014 · 2 Comments

Dear people, do you know of the battle of the vegetables?
All is put before you.
The tomato rises up from the center:
“My food is famous, better than the eggplant!”

The eggplant responds:
“Be quiet, tomato.
You are not worth a penny.
Two days in the basket,
you are ready for the garbage!” . . . 

—from Si Savesh La Buena Djente (Dear People, Do You Know of the Battle of the Vegetables?)

A lot of vegetables will be clamoring for attention at our seder this Tuesday night. We host the second night of Passover, and there will be both tomatoes and eggplants featured—but not in the same dish, so no fighting at the table.

On Sunday afternoon, I set out to buy the freshest vegetables (and fruit, too) that I could find before the holiday. The weather was warming, the air pleasant. I backed out of the garage. Ca-chunk!  Not sure what that was about, I tested my brakes. All seemed fine, and on I drove.

That is, until the tire pressure gauge lit up about a mile down the road. I pulled over. Sure enough, I had a very flat tire. I drove carefully into a nearby parking lot, called AAA, then called home.

There was a time, long ago, when I might have tried to change it myself. In grad school, I once spent a very cold afternoon in a garage with one of my classmates, who taught me how to tune up my old Chevelle. It was fun. My hands froze, but this was long before I knew I had any medical issues.

Much as I wished I could have saved time, there was no way I would now attempt to change the tire with my hands so damaged by scleroderma. Instead, Al came to the rescue, traded cars with me and waited for AAA to arrive, while I headed off to the market.

Already behind schedule, I got there about 1:30. Never go shopping for vegetables at a Wegman’s on a Sunday afternoon, especially before a holiday week. The produce section was mobbed. Mesmerized shoppers wandered amidst rainbow mounds of fresh vegetables and fruits, sniffing and squeezing, checking for ripeness and price, with many near misses between shopping carts. “Pick me, pick me!” cried the delectable produce from their artful displays—all except the organic strawberries, on special, which had been snatched up long before I arrived.

Fortunately, the eggplants were piled at one end of the produce section and the tomatoes, at the other. I assume the produce staff are well aware of their rivalry and keep them separate.

I resolutely stuck to my list—except for picking up a bag of lovely, multicolored fingerling potatoes. One more easy side dish of roasted veggies certainly won’t be a hassle, right?

On my way to check-out, a seductive display of fresh plum tomatoes nearly broke my resolve. But I reminded myself that it would be so much more hand work to peel and seed them for the Prassa Yahnisi (Turkish Braised Leeks and Tomatoes), rather than use the Kosher for Passover canned variety that Al had already bought for me. Plus, I didn’t trust them to be sweet enough this time of year, no matter where their place of origin.

Yes, yes, I know. Sorry tomatoes, I’m afraid the fresh eggplants won this round. Maybe next year.

But . . . did you have anything to do with that flat tire?

Note: You can read the entire translated Ladino poem, Si Savesh La Buena Djente—and find wonderful vegetarian recipes for Passover and year-round—in Olive Trees and Honey: A Treasury of Vegetarian Recipes from Jewish Communities Around the World, by Gil Marks (Wiley Publishing: 2005).

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, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: cooking, hands, vegetarian

“How Is Your Heart?”

Evelyn Herwitz · February 25, 2014 · 4 Comments

Sometimes, a chronic medical condition can save your life.

It is February 15, 1916. My maternal grandfather, Max Kronenberg, age 21, is heading to the Russian Front aboard a train with fellow German soldiers, destination unknown.

Max_Kronenberg_1914He has been assigned to a unit responsible for field communications, stringing telephone lines and monitoring messages between command posts and troops in the trenches. “Who knows whether that’s good or bad,” he writes to his parents, back in Berlin. “I did not make a special effort for it but don’t want to change it either. . . .”

I am sitting in bed late Saturday night, a huge black binder on my lap, reading my mother’s translation of Max’s wartime correspondence. This and other binders of family memorabilia have been collecting dust for more than a decade on the bottom shelf of our bedroom bookcase. 

The collection is just one of those things I’ve always meant to read, but never gotten around to until a few months ago, when I was contacted by faculty of the Technische Universität Berlin who are writing my grandfather’s biography. A professor at the TU until he lost his job when Hitler came to power, my grandfather wrote seminal texts for the field of machining science, a precise engineering specialty. I’ve sent a photo and some family stories to help with the book. Now I’m digging deeper to learn about this man who was responsible for enabling my grandmother and mother to leave Germany in 1936, before it was too late for Jews to escape.

Ten days later, February 25. Max’s train departs from Vietz, carriages and guns decorated with pine branches and flags. He is an artilleryman in the Bavarian Cavalry Division of the 824th Field Artillery Battalion, 10th Army of the German Empire. Food is plentiful, the compartments comfortable—they travel on an express train where each soldier has a bench to himself and two blankets. “Could you obtain two cat pelts for me?” he writes. “They are supposed to be the best prevention for cold feet. Our tailor makes slippers to measure.”

Comforts are fleeting, bravado short-lived. Traveling by train through Poland, then on foot, the battalion marches over many kilometers of deep snow and ice to their position, 8 km from the front. Max’s unit is stationed near Lake Narach, in present-day Belarus.

Food grows scarce. As snow melts, the ground turns to mud. The Russians, prompted by French allies who want to deflect German forces from Verdun, agree to launch an offensive against the Germans in the Lakes region. The Russian artillery bombardment lasts two days, but then they make the mistake of crossing no-man’s land between trenches in groups and are massacred by German machine gunners.

“It was worst on March 18/19,” writes Max. “Today it is rather quiet again. . . . Three days ago . . . one could hear an 18 hour bombardment from there. It should be over soon. In the first place they are getting their heads bloodied, and secondly, it is thawing now and therefore difficulties in transporting grow to undesirable proportions.”

He writes as he tries to dry out his soaking clothes before a smoky oven, after falling hip-deep in a water-filled ditch, en route to setting up new telephone poles: “Could you send me some canned vegetables? The only packages that arrive quickly are those weighing 1 lb. But you make several small packages. One depends on these packages. I don’t manage very well with the rye bread because I am always extremely hungry.” My mother adds a translator’s note: “extremely was crossed out and ‘very’ substituted.”

There is no great love of country or the German cause in these letters. He is a resolute soldier on the wrong side of history, doing his duty. Mostly, Max writes about the daily grind of army life and asks about the packages his mother sends, filled with chocolate, sausages, pies, cigarettes, butter, even raw eggs, that arrive too far apart, often with goodies missing.

In turn, my great grandmother Ella frets about not hearing from him for weeks at a time. His account of his fall into the ditch frightens her when the letter finally arrives. Max’s younger brother, Walter, has also been conscripted and not heard from for weeks. “Nothing much is happening here, it is so terribly quiet at home as you can imagine, the two of you so far, sometimes I feel so wretched and no prospect of peace according to the last speech of the Reich Chancellor,” she writes. “Write immediately and daily you know how I/we wait for news. How is your heart?”

This is the first mention of Max’s heart problem. As the months grow longer and conditions harder, he describes palpitations, although his telephone unit remains a safe distance behind the riflemen’s trenches. Sometime during the spring, he sends a note:

“So that you won’t get a shock when you see battery 824 mentioned in the casualty lists. Our half battery stationed farther south than we are incurred some casualties the other day. One dead and three injured. The guys were in high spirits and were showing off within site of the enemy. An artillery salvo found its target. Too bad about the guy who was killed, he was nice. The others were slightly wounded. So, no reason to fear.”

Long, tedious days are spent cutting trees for log roads to enable troop movements over soggy ground. Every evening, the soldiers hope for letters and packages from home to supplement their meagre rations, share photos of loved ones that arrive in the mail and debate the war’s end. Max receives an occasional newspaper.

“Then comes always the question: Kronenberg, is there nothing about peace in the paper?” he writes in late April. “The smallest phrase is analyzed, debated. Then there are long debates about peace, each one says something whether optimist or pessimist. The most important question is the order in which troops might be discharged.”

On April 28, he writes of a close call. While stringing more telephone wires, Max and a few comrades cross an open field and hear some artillery fire. At first they don’t realize they are the targets, but then “we hear shrapnel balls striking into the field about 50 m in front of us. We used the interval between loading to run to the log cabin approximately 200 m away.”

After an hour’s wait, the men go back to retrieve the roll of wire and attract more enemy fire. “There is a tree shortly before the cabin and I wanted to throw the wire across it—yea—that’s a laugh—an asshole (excuse me) of a Siberian sharpshooter shot at me about 2 m above my head. At that I removed myself. No one is going to hit me.”

Following this episode, which terrifies his parents, Max’s letters become more crisp, annoyed, bitter. He spends long days in the trenches, manning the telephone. He anxiously awaits packages from home. On May 9 he writes, “Today I feel miserable again especially because the lice are plaguing me terribly. If only this thing would come to an end—or that I would be promoted. As a NCO life is better, that’s the deciding point in the matter of promotion. I hope I will get leave soon. My heart isn’t doing too well, either, but it’s useless to go on sick call here.”

A week later, he chides his parents about their concerns: “If you are going to get so upset about 3 errant bullets then I won’t write anything about the war anymore. There’s no point to it! Being here in the East is simply life insurance against Verdun. It’s completely quiet here right now, since our lines are intact and I don’t go past them anymore and reckless I am not. But perhaps I will soon be transferred from the battery. There’s supposed to be a new artillery company being formed and they’re looking for student and graduate engineers from the Institute of Technology. If the battery would let me go, I’d be in fine shape.”

Soon, Max gains permission to apply to the new unit. After three days in the trenches, he returns to quarters and is ecstatic to receive letters and three packages from home, including zweiback, clean underwear, canned goods, hard candy, sugar, peppermint, sausage and a tin of herrings, as well as 20 marks to pay for supplies at the overpriced canteen.

He asks for soap and a copy of Kant’s Critique of Pure Reason to be sent, as well as some math textbooks from home. “Send the books as quickly as possible because when I have telephone watch at night from 12 to 4 I have a lot of time to read. Otherwise I feel pretty well. My heart acts up a bit, quite frequently, especially when I walk a lot, but there is no use going on sick call here.”

In June comes a promotion to Lance Corporal. His application is accepted to the new unit, a Sound Measurement Troop that monitors enemy positions. He longs for socks from home. His new unit is quartered far back from the front. “Today a personal miracle occurred,” he writes sardonically on June 22. “After a rest cure of 4 months in the Russian forests, meadows and fields I took a shower and deloused myself and my ‘rags.’ The bath house and delousing station were donated by a national association of pious maiden ladies from Silesia—I think—as a gift of love (pardon the crude soldier’s joke) . . . .that’s where I discovered what I looked like under all the dirt.”

More trees are felled as Observer Post 3 builds new quarters. Other than mosquitos, Max enjoys his forays into the forests. “The trees are gigantic and give wonderful shade. The birds don’t think about the war and I don’t either. . . . A little brook flanked by tall shade trees gurgles peacefully. Unfortunately the peace is disturbed by the boom boom of the anti aircraft batteries shooting at airplanes. One can’t see them but hears their buzzing. Little white cloud dots of shrapnel mark their path.”

Weeks pass. By the banks of the Svilka, Max celebrates his 22nd birthday with his comrades on July 8 with three bottles of Bordeaux purchased at the canteen and cigarettes. The unit of engineers builds a sturdy cabin for shelter that is the envy of other troops. He takes shifts monitoring sounds of enemy artillery from a booth hidden in the forest. Compared to the trenches, the daily routine is more relaxing. But stress never lifts. “Sometimes one is happy, sometimes one is wrapped in depression,” he writes to his preteen sister, Tutti, “because as nice as it sounds it’s different at home, to be in Germany is something completely different and to be a civilian!”

To his mother, as the summer heat intensifies, he writes: “I can’t exactly aver that I am on summer vacation. I am left with pretty severe rheumatism from the winter and frequently become aware of my heart in this heat. When there is a sudden rain storm, it’s the well know soldier’s complaint: Kidney pains. Now you must not think that I’m a walking corpse. Washed out, yes. But the others aren’t any better off.”

There are 12-hour rotations in the hidden booth, where the soldiers take turns at 4-hour shifts, watching and listening for enemy activity. If anything happens, “the measuring starts.” They nap when action quiets. Each rotation is followed by a 24-hour respite. Then, on August 7, at 11:00 p.m., the unit is roused with shouts. Quickly they pack up and begin a long trek by foot, truck and train to the southwest, by Max’s compass. As they travel across the Russian border into Austria-Hungary, they are passed by an express train headed to Vienna. “Strange sight. Women who look elegant and clean observe this military swarm with curiosity,” Max writes his parents.

Once in Austria, they head east, again, still with no information about their destination, and stop at a town he identifies as S. “We meet train after train with wounded, munitions trains, military personnel trains are back and forth. We await new orders in S. It takes a long time and we help load the many wounded on trains. A terrible picture: Moaning, sighing, wild hallucinations, smell of blood and carbolic acid and in between the trucks bringing more wounded.”

They move on, to be stationed in Galicia. Food is in ample supply. Meat every night, potatoes, vegetables harvested from the gardens left behind by former inhabitants who fled from the invading forces. The unit settles into new quarters—a former pig sty with a straw roof and walls. ”I am fine, just very homesick,” Max writes.

On a late night, 8 km trip on August 29 with a comrade to fetch mail from the army post office, Max gets drenched in a downpour and falls in the puddled streets, soaking through all his clothes. They bring the heavy load of mail and packages back to their new observer post in an oak forest. Rain pours through cracks in the structure. He finds a bottle of cognac in a package from home.

“In two gulps it is half empty! Did that feel good!” he writes. “Huddled in a wet blanket and sitting on the backpack while it continues to pour without pause to accompaniment of infantry fire. Sleep is a figment of one’s imagination. Another swig of cognac! I am curious whether I caught cold. Up to now I just noticed increased heart activity.”

Two weeks later, he is transferred to a field hospital “for heart and nervous disorders.” By winter, he has returned to Berlin, working with factory administration, back where he had been before the war.

Max_KronenbergSo ends my grandfather’s World War I odyssey. Max lost most of his hair during his tour of duty. When my grandparents would visit us as children, my sister and I used to love standing behind him as he sat in a chair and dance our fingers atop his very bald pate. He would pretend we were flies and swat his head with a newspaper, to our delighted giggles. 

But I did not know him well. A modest, remote, serious man, he never shared all that he had experienced in the war or during the years after Hitler came to power. We never discussed what it took for him to leave his homeland, come to the United States and save many family members in the process—though not his parents, who refused to leave Germany and died in Theresienstadt. 

If it weren’t for his heart problems, Max Kronenberg may never have made it back from the Eastern Front and on to become a path-breaking mechanical engineer, who, among other accomplishments, consulted to the U.S. Secretary of War during World War II and the United Nations. If it weren’t for his courageous heart, I would never have existed. May his memory be for a blessing.

Image Notes: The top photo was taken of Max in 1914. I believe he is wearing the uniform of his student fraternity, since he was not conscripted until 1916. The bottom photo is of my grandfather as I remember him. This was taken at a professional conference or an awards ceremony when he was in his 70s, to the best of my recollection. Some of his professional papers are housed in the Smithsonian Institution.

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, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: Max Kronenberg, resilience

Pharmacopia

Evelyn Herwitz · February 11, 2014 · 2 Comments

Lately, it seems, I’m running to the vet or the pharmacy every week or so to refill a prescription.

Ginger, our 15-and-a-half-year-old Golden Retriever, needs a steady supply of her chewable, yummy, liver-flavored pills for arthritis, plus her chewable, yummy, other-flavor pills to help her cognition (I could use some of these, too, for those ever-more-frequent senior moments), and another pill for her thyroid, and another med for her arthritis (which I just discovered comes in pill form, not yummy or chewable, but considerably cheaper than the liquid version), plus a stomach acid blocker.

For me, there are about a half-dozen prescriptions to manage at any one time, one from a specialty mail-order pharmacy that requires a monthly blood test, and others that run out on a staggered schedule and require my attention every couple of weeks or so. Plus some vitamin supplements and over-the-counter meds to round out the mix.

I’m sure there’s a more efficient way to keep track of all this and probably some cheaper alternatives for Ginger that I have yet to discover.

I need to check out substitutions for some of my own meds, as well. Recently my deductible on two different scrips jumped from $25 to $50. One of these is a monthly refill. It all adds up, quickly.

Even still, I’m blessed with good medical insurance through Al’s employer (at least, that is, until we find out what the new plan will be for next year, since the hospital where he is a social worker was recently bought out, once again). One of my prescriptions would cost nearly $5,000 a month without coverage. Very sobering. I think about this every time I take one of those little pills, which I need twice a day. I try to be very careful not to drop one.

When I rise and before bed, I line up one set of pills and swallow them with water. Then, after breakfast and dinner, Ginger and I take pills together. Despite her age, she is actually very good about reminding me if I get distracted, because for her, medicine is a big treat.

Not only are the chewables yummy, but she enjoys having her other pills with a little butter, plus a scoop of low-fat ricotta and a little bread or left-over challah, to be sure the arthritis meds don’t irritate her stomach. She will start pacing back and forth to nudge me if I miss the timing, which she seems to know by the amount of daylight or lack, thereof, and where we are in our daily routine of meals.

I do not look forward to taking my meds, nor to constantly running to refill prescriptions, nor to paying for it all. It is just one of those things that needs to happen on schedule.

But I think Ginger has the right attitude. In her world, every day is an adventure to be savored.

My meds certainly help me feel a lot better than I would without them. They are a nuisance to manage, a growing expense. But I am extremely grateful to have access to the drugs I need in order to stay as healthy as possible.

Now, if they could only come in chewable, yummy flavors.

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, Sight, Taste Tagged With: body-mind balance, managing chronic disease, managing medications, 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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