Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Art in the Park

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What could be more pleasant on a beautiful summer Sunday afternoon than a stroll through our Fair City’s oldest park to view sculptures on display? It’s an annual event that we always look forward to, and this year’s exhibition is one of the best I’ve seen.

To the clatter of teens practicing skateboard tricks, the click of dominoes accompanied by Latin music adrift on a breeze, and exhortations by a man in a tan suit preaching gospel, Al and I wandered through Worcester’s Elm Park admiring artworks. Here are my favorites. Enjoy!

“Deer” by Jose Criollo
Recycled tools, chains, and metal machines

 

“The Feather” by Kirk Seese
Steel, MDO, UV links, acrylic sealer

 

“Whirlwind 1,2,3” by David Skora
Fabricated and polychromed welded steel

 

“SOS Swimmers” by A+J Art + Design
Polyurethane foam, paint, anchoring system

 

“Chirp, Chirp!” by Chandler Magnet Elementary School, 6th Grade
Ann Villareal & Rachel Gately, Teachers; Donna E. Rudek, M.Ed., Artist

 

“Mary’s Machine” by James DiSilvestro
Cast iron sewing machine, shaped steel, paint

 

“Ancestor” by Madeleine Lord
Welded steel scraps

 

“Disk” by Vicente Garcia
Self-rusting steel plate, rebar

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.

Case Management

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I rarely cancel doctor’s appointments, even when I don’t feel like going. But I did that on Monday.

I was supposed to see my Boston Medical pulmonologist, the one who specializes in pulmonary hypertension, for a late afternoon appointment. This was a routine follow-up from February.

However, on Friday I had just driven into Boston for a midday appointment with my cardiologist, also a routine follow-up, this time from January. And since he has been my go-to for diagnosing my Type 2 pulmonary hypertension, and, thank goodness, the medication he put me on is working well, I just didn’t see the point of the Monday appointment. Why drive an hour-plus each way to wait and wait for a 15 minute appointment where I will tell the same story of my status and get the same (welcome, but not needed) reassurance from her that I’m doing okay, no changes needed? Especially if she can just read his notes in my chart.

This is not to say that I don’t value the pulmonologist’s time and advice. It’s just the schedule made the whole thing seem redundant. And Boston traffic during rush hour is no picnic.

I tried several times last week and again Monday morning to see if I could at least switch the appointment to telemedicine, but now that the pandemic is in the rear view mirror (thank God), that option is no longer readily available. So I rescheduled for September at a more reasonable time of day.

There are always stretches of multiple medical appointments in my calendar. Sometimes they are well-spaced, and sometimes they clump together, as they have recently. I still have another Boston Medical appointment for Thursday with my rheumatologist. Cutting out one more commute this week is the best way for me to conserve my energy while managing my own case. And to stay sane.

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: Sunguk Kim

And She Persisted

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It is really hard to be patient. Especially now, when we’re so accustomed to getting immediate answers at the click of a keystroke. Especially when it comes to ambiguous health issues with no ready solution in sight.

But I have a different context for this observation, as I write on a rainy Monday morning. Please bear with me.

I have been working on a novel since fall 2014. Set in World War I, it’s about a widow whose estranged daughter runs off with her beau to volunteer for the French medical service, and the mother’s journey to find her and bring her home. You can read more about it here. For the past year-and-a-half, I’ve been looking for a literary agent who will help me get published. It’s a very long slog.

I’ve gotten some bites and requests for parts or all of the manuscript, only to have the agent reject it (“I didn’t fall in love”) or in one case, ghost me for the better part of a year after promising to read it. I’ve worked on the language and plot some more, completing the eleventh draft this spring. I feel confident it is my best work. But the book publishing world is highly competitive, and it is very hard for a debut author to get her toe in the door, let alone a whole foot.

It takes a ton of patience. And confidence. And a really thick hide. Earlier today, I spoke with a published author of multiple novels who was kind enough to read the manuscript for me and give me some feedback. It’s taken the better part of a year for us to connect. Worth the wait, because he was very encouraging, told me no need for any more revisions, just focus on getting it published. He had some good suggestions that confirmed my strategy going forward and also gave me a few other helpful tips. Most of all, he likened the process to starting a small business, which resonated for me, having wrestled through that experience years ago to launch my marketing consultancy. “A year-and-a-half is nothing,” he added.

It’s all about managing expectations, which is true of most challenging problems. American culture places a premium on speed, youth, and instant gratification—none of which has much value for solving a really difficult issue. Getting my novel published will take more time and research, many more queries, and a resolve to keep going even in the face of multiple rejections.

Managing an elusive disease with no known cure, like scleroderma, takes a lifetime of learning to manage symptoms, find the right medical team, build partnerships with health care professionals, practice a healthful lifestyle, get help for depression and other mental health challenges that arise in the course of such complexity, and find ways to live fully with the disease. For starters.

It takes a mother-lode of patience. For you, Dear Reader, that is what I wish on this rainy Monday morning.

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: Nathan Dumlao

“A People’s Contest”

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On this July 4th, I’m looking forward to relaxing and going to an outdoor concert in the evening, a classic way to mark Independence Day. But I’m also thinking about what our country means to me and what’s at stake in these fraught times. So I turned to Abraham Lincoln for some insights.

I share with you here excerpts from his July 4, 1861 Message to Congress, at the outset of the Civil War. He opens with an explanation of his profoundly difficult decision to invoke war powers in response to the Confederate Army’s April 12 assault on Fort Sumter in Charleston Harbor, South Carolina. While much of Lincoln’s message is specific to the details of the war, his thoughts about our republic remain as fresh and insightful as the day he wrote them. Well worth recalling today in our divided nation:

And this issue [the attack on Fort Sumter] embraces more than the fate of these United States. It presents to the whole family of man the question whether a constitutional republic, or democracy—a government of the people by the same people—can or can not maintain its territorial integrity against its own domestic foes. It presents the question whether discontented individuals, too few in numbers to control administration according to organic law in any case, can always, upon the pretenses made in this case, or on any other pretenses, or arbitrarily without any pretense, break up their government, and thus practically put an end to free government upon the earth. It forces us to ask, Is there in all republics this inherent and fatal weakness? Must a government of necessity be too strong for the liberties of its own people, or too weak to maintain its own existence? . . .

This is essentially a people’s contest. On the side of the Union it is a struggle for maintaining in the world that form and substance of government whose leading object is to elevate the condition of men; to lift artificial weights from all shoulders; to clear the paths of laudable pursuit for all; to afford all an unfettered start and a fair chance in the race of life. . . .

Our popular Government has often been called an experiment. Two points in it our people have already settled—the successful establishing and the successful administering of it. One still remains—its successful maintenance against a formidable internal attempt to overthrow it. It is now for them to demonstrate to the world that those who can fairly carry an election can also suppress a rebellion; that ballots are the rightful and peaceful successors of bullets, and that when ballots have fairly and constitutionally [been] decided there can be no successful appeal back to bullets; that there can be no successful appeal except to ballots themselves at succeeding elections. Such will be a great lesson of peace, teaching men that what they can not take by an election neither can they take it by a war; teaching all the folly of being the beginners of a war. . . .

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: Abraham Lincoln photographic portrait by Joseph E. Baker, c 1865; Library of Congress

Side Effects

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Last Tuesday afternoon, I got my second shingles vaccination. My first Shingrix shot, back in February, gave me a sore arm with a rash that lasted more than a week. But it was otherwise unremarkable. This time, however, was different.

By bedtime, my arm was achy, per usual after a vaccination. But I had trouble sleeping, waking several times with sore joints and unable to find a comfortable position. In the morning, I was so cold that my teeth were chattering. Very strange sensation. Could not stop until I managed to warm up under sweaters and blankets. For the rest of the day, I was draggy and achy, felt faint a few times, and basically had to lie down a lot. Over-the-counter pain meds helped somewhat. By Thursday I began to perk up, though by afternoon, I started to fade again. It wasn’t until Friday that I felt more like myself.

Annoying as this was (I haven’t felt that crummy in a long time), it was certainly better than getting shingles. I actually had shingles once, a few years ago, but was fortunate enough to ask my PCP about what I thought was a spider bite at a routine check-up. He recognized it as shingles and put me on a week’s course of antiviral medication, which worked very well. I never experienced the debilitating nerve pain from the virus, thank goodness, but I know others who have, and it is no picnic.

Because I’d had shingles, however, I had a long conversation with my Boston Medical rheumatologist about whether the data about the vaccine’s effectiveness actually applied to me, since the research was based only on people who had never had shingles. At that time, he agreed that it was unnecessary. But the vaccine and research have evolved since then, and now my team of docs all recommended getting vaccinated.

I write this not to discourage anyone from getting vaccinated for shingles—just to alert you that the second dose can pack a wallop. Even the pharmacist told me before I received my shot that I might experience “flu-like” symptoms. So give yourself downtime after the shot, in case you have a reaction. And be sure to discuss with your medical team whether a shingles vaccination is appropriate for your personal health needs and any side effects that should be weighed against benefits for your particular situation.

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: Gratisography