Living with Scleroderma

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

Back Home

Evelyn Herwitz · September 18, 2018 · 2 Comments

Home from our summer travels for about a week-and-a-half, but already it seems like a long time ago that we were away. That’s the strange thing about vacations. You’re completely immersed in your environs while you’re there, but once you’re back, it’s almost as if you never left.

Which is why I keep a travel journal, and we take plenty of pictures (especially my dear husband). If a tourist walks in a city and leaves without a record, was she really there?

Yes, I was, with Al—in Prague, Bratislava, Vienna and Berlin. Sixteen days, four countries, a crash course in European history, spectacular scenery, wonderful art. This trip was also personal: the bookends of our itinerary were designed to honor the memory of my great grandparents, who were murdered in Eastern Europe during the Holocaust.

My mother’s father, a professor of engineering at the Technische Universität Berlin, saw the writing on the wall in 1935 when he lost his position because he was Jewish. In 1936, after five months of searching for work in the U.S., he was able to find a good job and make a new home for my grandmother and mother. But, despite a heroic effort, he was unable to convince his elderly parents, who loved their homeland, that they should emigrate, as well, until it was far too late for them to escape the Nazis. They were transported to what is now called Terezín, a concentration camp about an hour’s drive from Prague, in August of 1942, and died there in early winter of 1943.

No one in my family has ever gone to Terezín. So, with a private tour guide, we visited the camp and learned details of my great grandparents’ final months. We lit candles in their memory. Later, at the end of our journey, we joined friends in Berlin for the placement of two Stolpersteine, or “stumbling stones,” which are memorial cobblestones placed in the sidewalk next to the home where victims of the Shoah last lived of their own free will. These were powerful experiences for me, which I am only beginning to process and understand. It is one thing to know the history of World War II in the abstract, and quite another to confront such horrors in the lives of your own family.

We enjoyed uplifting experiences, as well: fairytale scenery in Prague, a day trip to Slovakia’s High Tatras amidst the Carpathian Mountains; a visit to a medieval silver mining town, also in Slovakia, one of several UNESCO World Heritage sites that we saw during our travels; extraordinary artwork by two of my favorite painters, Egon Schiele and Paul Klee, in Vienna and Berlin. And, oh, yes, some very delicious food. My hands held up, my feet wore out, but I’m so grateful that we were able to honor my great grandparents’ memory and have another overseas adventure, whatever the challenges—physical and emotional.

Here are a few highlights:

View of Prague Castle from the Charles Bridge

Mucha stained glass window in St. Vitas’s Cathedral, Prague

Old Castle fortress, Banská Štiavnica, Slovakia

1936 Olympic champion Jesse Owens’ name carved in the wall of the Berlin Olympiastadion (top left column)

“Landschaft in Blau” (Landscape in Blue) by Paul Klee, 1917, Berggruen Museum, Berlin

The Stolpersteine honoring my great grandparents, Berlin

Savory Summer

Evelyn Herwitz · August 21, 2018 · Leave a Comment

Look! the round-cheeked moon floats high,
In the glowing August sky,
Quenching all her neighbor stars,
Save the steady flame of Mars.
—Emma Lazarus, August Moon

Mid-August, and I can already sense fall’s vibrations. Not yet. No, not yet.

On so many recent sweltering nights, I’ve lain in bed with windows open and treasured the symphony of crickets and katydids. How lovely to leave the house without donning even a sweater. The sun still sets after supper, and the trees remain lush, even as a few wayward, scarlet leaves drift to the ground beneath the sugar maples on our street.

Before autumn’s busy-ness descends, it’s time for time off—from work and deadlines and responsibilities. It’s time for a break from blogging, too. I wish you, Dear Reader, a savory late summer. I’ll be back with weekly posts in mid-September.

Image Credit: Aron

Extraction

Evelyn Herwitz · August 14, 2018 · Leave a Comment

I spared myself a visit to my hand surgeon last Friday. Don’t get me wrong. He’s a great physician. But the presenting problem resolved itself, so to speak.

The presenting problem was a piece of calcium the color of volcanic ash that has been emerging from the pad of my right thumb for nearly a year. It almost surfaced back in the winter, then receded for several months before pushing closer and closer to the top layer of skin. Finally, a few weeks ago, my thumb erupted.

But all I could see was the tip of the iceberg (mixing metaphors, here—for some reason, the calcium deposits that my scleroderma manufactures have changed in color from white to dark gray in recent years—no idea why). Slowly, it revealed more of itself, but not enough so that I could pull it out easily.

So I resorted to trying to gradually soak it out of my thumb, using peroxide morning and evening, plus antibiotic ointment with gauze and fabric bandages to protect it during the day and overnight. This seemed not to accomplish much, other than protect me from infections. I finally decided to make an appointment with my hand surgeon to see if he could extract it in the office. I was hoping that would help the pit to make up its mind to come out on its own.

Still, it needed more coaxing. This required the proper tools. I turned to my father’s old dissecting kit. Made of black fabric, lined with purple felt, it contains everything you need for high school biology to dissect a frog, including a pair of very fine needle-nosed tweezers. I have some unkind memories of those tweezers—my dad used them to pull splinters out of my fingers when I was a kid, a procedure that never failed to make me squirm and scream.

However, they are the best tweezers for pulling calcium pits out of my fingers (especially since I’m the one doing the operation). Every morning and night last week, leading up to the scheduled Friday appointment, I wiped the tweezers with an alcohol pad, daubed peroxide on my thumb, and proceeded to try to loosen up the calcium pit from surrounding skin.

Finally, on Thursday morning, I got lucky. The calcium pit gave up and I plucked it out—a quarter inch long and eighth of an inch in diameter. The biggest pit I have ever extracted. Lots of blood, but pressure stanched the flow. I filled the hole in my thumb with antibiotic ointment and covered it up. Then I cancelled my appointment.

A few days later, the skin has nearly filled in. As strange as this disease gets, it’s always a relief to see that my body can heal itself, too.

Image Credit: Jack Ebnet

See at Last

Evelyn Herwitz · August 7, 2018 · Leave a Comment

There is nothing like a new pair of glasses with an accurate correction. For months, now, I have been tolerating slightly blurred vision, the aftermath of 60 dives in a Hyperbaric Oxygen chamber last fall to heal my hands from major surgery. This is a common side effect of the treatment, and, as predicted, after about three months, my sight returned to almost normal.

But the almost part was pretty frustrating—just blurred enough so I had trouble reading street signs, especially later in the day when my eyes are drier from Sjogren’s. In any kind of auditorium setting, I had trouble clearly discerning people’s faces or what was projected on the movie screen. I kept waiting for my vision to settle down, but it never went back to what it was prior to the HBO therapy.

So, it was high time a couple of weeks ago to get a check-up and new prescription. Unfortunately, our vision insurance only gives a discount on new frames every two years, and I had just gotten new glasses last summer. Fortunately, however, a local college here trains optometrists, and as long as you are willing to take the extra time for an exam by the students, you get a 50 percent discount on frames at the college’s frame shop—also a training venue. It’s a great deal, and well worth being a guinea pig for the students, who are lovely, very earnest and dedicated to getting it right.

I picked up my new frames last Thursday. They are wonderful. Not only can I once again see all the leaves on trees and easily read signs when I drive, but I am now enjoying transitional lenses, which turn amber-brown in the sunlight. My eyes are incredibly light sensitive due to Sjogren’s dryness, and I have constantly fumbled with switching from clear lenses to prescription sunglasses when going in and out of buildings on a sunny day. Now the lenses do the work for me.

I’m still getting new prescription sunglasses. The one hitch with transitional lenses is that they don’t get completely dark in warm weather. The optician explained that the lenses are temperature sensitive, as well, and turn their darkest in winter months. Given the heat we’re sweltering in lately, I need more visual protection for summer.

But I’m happy. I can finally see what I want to see again, without eyestrain or fatigue. What a blessing.

Image Credit: David Travis

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