Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taking a Break

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I am happy to report that I got through my extraction of a resorbed tooth with no complications last Wednesday—no fun, but it’s done. So I was able to get my spring Covid shot on Friday, also without complications. My lungs have cleared from pneumonia,and I caught up a bit on rest over the weekend, along with enjoying a lovely Mother’s Day visit with my eldest in Boston. My finger ulcer heals slowly, but at least it continues to heal.

I’m also happy to report that my acting debut, a scene from The Glass Menagerie by Tennessee Williams last Monday night, was a success. First time I’ve performed in a play since the sixth grade, and I remembered all my lines (no small feat, giving how much harder it is to remember stuff at this age, especially with scleroderma brain fog).

And so, I will be taking a few weeks off for the rest of the month, to recharge. I’ll be back on this blog in June. In the meantime, Dear Reader, I wish you good health, good medical care, and that you make the most of each moment.

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: David Clode

Rough Patch

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So, what I thought was “just” allergies last week turned out to be more complicated. When our geriatrics nurse practitioner came to our home for a check-up last week, she carefully listened to my lungs and informed me that I had not developed bronchitis, as I’d thought. No, I had pneumonia.

What? That was not on my bingo card. Glad she caught it before it got even worse. I started antibiotics that afternoon, and within a few days I was starting to feel like myself again. Thank goodness, because I was getting pretty worried about where all this was headed.

Also, on Monday night I had my acting class performance—first time on stage since elementary school, a scene from Tennessee Williams’s The Glass Menagerie. We’ve been rehearsing for months, and I sure didn’t want to have to miss it. (I’m writing on Monday afternoon, so fingers crossed all goes well.)

Next on the medical agenda is a tooth extraction on Wednesday and prep for another implant. So, yet another reason I need to get past this whole respiratory episode. The tooth is definitely failing, getting more sensitive, so it really can’t wait much longer.

Then on Thursday, it’s back to the Wound Clinic to check on my slowly healing ulcer. It’s improving gradually, but needs a lot of TLC.

When all that’s done, I need to get my spring Covid vax, I hope on Friday, if all goes according to plan. We’re traveling again soon, so all this has to be wrapped up by the end of the week.

Meanwhile, Al caught whatever I had that wasn’t allergies, and is doing better but still recovering.

Of course, it could always be worse. But this has been one rough patch. Here’s hoping we’re both finally on the mend.

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: Nik

Good Grief

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I really could use a break, right about now. It’s gorgeous outside, a medley of pink and white blossoms, chartreuse young leaves, sunny forsythias, bright red tulips, dainty violets. But I can’t go outside for my walks to revel in spring’s beauty because I’m having one monster allergic reaction to all the associated pollen. I think maple trees are the main culprit, because this happens to me every year, now, when they start to flower. I have been congested and coughing for more than a week.

This is complicated by the fact that I can’t take any OTC decongestants because they will raise my blood pressure. Antihistamines help, as do expectorants and cough surpressants, but it’s really not enough. Can’t use saline rinses because they tend to make my nose bleed. Very frustrating. Had to skip a theater performance this weekend because I was coughing so much, I didn’t want to be THAT annoying audience member.

Then there is the latest dental issue. I’ve written over the years of how I have a delightful complication of scleroderma that causes the roots of my teeth to resorb. Every few years another one gives out, and I have to start the long and expensive process of getting another implant. A few weeks ago, one more tooth that my dentist has been monitoring for years decided that its time is up. The extraction is scheduled for next Wednesday, giving me a week to recover before some planned travel.

At least my left index finger is slowly healing. Two visits to our hospital’s Wound Clinic were very helpful, and between steroid ointment to reduce the inflammation and some petroleum-jelly-infused wound dressing, it is inching along. But it requires a lot more patience than I’ve been feeling, of late. Like I said, I really could use a break from all this mishegas.

And so, Dear Reader, thanks for letting me rant. It’s just been one of those days.

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.

Reassurance

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On Monday afternoon, I finally saw my cardiologist at Boston Medical. This was no small feat. I was supposed to see him back in December, six months after our June 2024 visit, per usual. But that appointment got cancelled, and I was told the next available appointment was not until early May. I reluctantly accepted, though it made no sense to have to go to the end of the line. Then, a few weeks ago, I got a call that the May appointment had been cancelled, and next available was the end of July. I took the date to get into his calendar, but I was not happy.

So, instead of just accepting the situation, I called my cardiologist’s assistant and asked if she could find out if he could slot me in. Apparently enough patients had also called that he added more clinic days to his schedule, and I saw him yesterday.

Given all the mishegas last month with my trip to the ED for spiking blood pressure—even as we had spoken by phone a few days later—I just needed to see him in person. He knows me really well, and he has a wonderful, calming demeanor. He also understands the role scleroderma can play in heart disease. My rheumatologist had ruled out kidney involvement for the high BP, at my insistence, even as it would have been a really remote possibility. But I needed to know: Could the spike be due to thickening of heart tissue?

While it is possible to run a diagnostic to investigate that question, he said the resulting data would not be definitive. But given that my BP has now stabilized on Losartin, he said that thickened heart tissue would not be the issue. If it were, then my BP would not have come down to a normal range.

While there is some stiffening of my heart, causing Type II Pulmonary Hypertension, it does not appear to be the causal factor for the BP spike. Most likely, he said, it was the OTC decongestant I took that day, which contained pseudoephidrine, which is a vasoconstrictor. Even if it never affected me before, he said I could have built up an intolerance.

Then there was the other big fear: With all the weird heart stuff, was I at risk of just keeling over from a heart attack? No, he said. You have no evidence of any electrical issues with your heart. From my echocardiograms, he added, your heart is actually quite strong. He’s told me this before, but I just needed to hear it again.

We joked a bit, and he told me if I ever need to see him, just call his assistant and she’ll fit me in. That, and his steady hand on my back as I said goodbye, was the best medicine of 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: Cathal Mac an Bheatha

And Just Like That . . .

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For weeks now, my bonsai, a Brazilian rain tree that I have been cultivating for nearly four years, now, has been shedding leaves. While some of this is to be expected—it’s a deciduous tree, after all—it just seemed out of the ordinary. Nearly every morning, I’d discover more yellow amidst the emerald green.

Was I watering it too little? Too much? Was my bonsai upset with the cold weather? The heat pump? Had I lost my touch? I had made sure to give it a little fertilizer to help it through the dark days of winter. A mistake?

Then, last Tuesday, all of a sudden . . . tiny new leaves! A Brazilian rain tree is characterized by multiple, symmetrical leaves that fold up like books at night. These newbies appeared as if a little green library was sprouting. And each day, since, the new leaves have grown larger, opening up to sunlight. It seems my bonsai was communing with all the plants outside that have begun to sprout their own new leaves, in synchrony.

Every spring’s rebirth is a miracle—and a reminder of Nature’s intense imperative to replenish and grow, despite the odds. It’s such a great gift, and a welcomed assurance that even when our world is so chaotic, life rebounds.

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.