Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Snap Judgment

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Even as I’ve adapted to my “revised” hands a year post-surgery, sometimes they still spring a surprise on me. I was working on a sewing project on Sunday, feeling quite pleased with myself that I could manipulate the fabric, stitch with great accuracy on my sewing machine, serge precisely to finish raw edges, iron and steam as I went along to get the right finish.

Then I noticed some red stuff on the handle of my iron. At first I thought it was just some shmutz from the fabric, which is a reddish brown and tends to shed. Then I looked at my right hand. Sure enough, without realizing it, I had cut the tip on my right ring finger.

Now, this can happen to anyone, I suppose, but for me the issue was that I didn’t feel the cut at all. This is one of my fingers that was partially amputated last fall due to ulcers gone wild, and the nerves at the tip are no longer as sensitive as they once were. Fortunately, the cut was only superficial, and I hadn’t dripped any blood on my project, which would have been a mess. But it was disturbing.

How could I have missed it? As I cleaned and bandaged the finger, I reviewed what I’d been doing in the past hour or so. Then it dawned on me: I have a lot of trouble manipulating pins for this project, because some of the fabric is densely woven and my fingers are now too short to leverage even a long, glass-head pin through all the layers. So I had tried using small binder clips, instead, to hold the pieces together. But I couldn’t pry them open far enough (again, an issue of finger strength), so I used a pair of pliers—and the clip snapped away from the pliers and nipped my finger. Ouch. It smarted, but eased up, so I didn’t think I’d really hurt myself. Apparently, however, that’s what did the damage.

I was able to keep sewing after I took care of the cut (and wiped the blood off the iron handle). I’m very happy with my slow but steady progress. But I realized that I have to be more vigilant when I’m using sharp tools. I may have learned how to use my hands again, but they are simply more fragile than they used to be, and I must pay closer attention to any pain sensations, even muted. Nerves are a first line of defense, to warn us when we’re endangering ourselves—but the sentinels in my fingertips are no longer operating at full strength. Time to call in the reserves.

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.

The Poppies Grow

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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.

Standard Time

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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

What I Want

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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

Wild Goose Chase

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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