Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Progress Report

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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.

Just Breathe

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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

Savory Summer

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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.

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: Aron

Extraction

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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.

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: Jack Ebnet

See at Last

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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.

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: David Travis