Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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How I Spent My Spring Vacation

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I’m back home since last Tuesday night, back on East Coast time, and nearly caught up on sleep, after an intensive 12-day journey with Al to Germany. As is my way, I packed a lot into our itinerary, based in part on more research for Novel 2, which is set in Weimar Germany, and in part on things I’ve always wondered about and wanted to visit, and in part on catching up with good friends there.

We flew direct to Frankfurt-am-Main, Germany’s financial center, and used it as a hub for day trips by train to various points of interest, including Kassel, home of the Brothers Grimm for most of their adult lives; the Rhine River Valley, speckled by castles, hillside vineyards, and lovely towns; Worms (pronounced Vorms, rhymes with forms), which was a famed center of Jewish intellectual life in the Middle Ages and is home to the oldest Jewish cemetery in Europe; and Heidelberg, a renowned university city and site of castle ruins.

From Frankfurt, we took the 4-hour high speed train to Berlin, and had a guided tour of the Schöneberg district, where my mother grew up around the corner from Albert Einstein, and the location of JFK’s famous “Ich bin ein Berliner” speech in 1963; visited a variety of spectacular museums, where we saw art by Paul Klee and Gerhardt Richter; as well as learned about life in East Berlin and under the surveillance of the Stasi secret police. We also visited a wonderful puppet museum with an extraordinary collection and curators who filled me in on some history I’d been seeking.

On top of that, we had a lovely and meaningful visit with our friends, who treated us to delicious meals and took us to another beautiful and historic Jewish cemetery, the largest in Europe. Last Monday we took the train back to Frankfurt, stayed overnight, and then flew home. I was exhausted, but it was well worth it. And that’s the very short version of our travels.

What do all these things have in common? I’m thinking a lot about German folklore and how it informed culture and society in the 1930s, as well as the heritage of German Jewish communities. I’m also thinking a lot about art and censorship, which are central to my novel. And I’ve always wondered about castles on the Rhine. Fun fact: they were built by princes who wanted to collect tolls from ships traveling up and down the river—the very definition of robber barons.

I’m still processing all that we explored. I will be thinking about this trip for a long time. Grateful we could go and return home safely. Here are just a few pics of what we saw. Enjoy!

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.

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

Adventures with Antibiotics

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Now that my blood pressure seems to be, thankfully, calming down, the next frontier is healing the infection in my left ring finger. As I’ve written recently, this has been going on for a couple of months, now. Two multi-week courses of Minocyline perhaps helped, but not enough to really clear the infection.

So, last Monday, I met with an infectious disease specialist to get some help. Finding a broad spectrum antibiotic for me is complicated, because I am allergic to a variety of treatments. This physician is a colleague of the ID doc I had switched to a couple of years ago, after my longtime specialist retired. The new doc was away, so I was scheduled to meet her. A good thing, as it turned out, because she is very empathetic and understood immediately what the problem was. She put me on a ten-day course of levoquin, which I had successfully used a couple of years ago for a severe digital ulcer infection.

Levoquin has a number of potential side effects. The most serious involve tendon inflammation and risk of tearing or rupture, especially the Achilles tendon. So far, thank goodness, that hasn’t happened. But, the evening I took the first dose, I discovered another side effect—insomnia. I simply could not fall asleep until after 4:30 a.m. While tossing and turning and looking up the drug’s impact on sleep (sure enough, I was not losing my mind), I also learned that you should not take ibuprofen with levoquin, because it can increase risk of seizures. I take ibuprofen daily to manage join pain.

So, the next morning, I wrote to my new ID specialist, told her what had happened, and asked about ibuprofen. While she was surprised about my sleep disruption (I always have rare side effects), she double checked and concurred that I should stop the ibuprofen while on this antibiotic and switch to acetaminophen to manage pain. Now, acetaminophen is fine for pain relief, but it does not treat inflammations.

This became readily apparent that night. I began to experience nerve pain in my infected ring finger and the middle finger next to it, which apparently had picked up some of the infection. Again, I struggled to sleep, and I could barely concentrate the next day. Finally, I gave up, contacted my geriatrics team which serves as my PCP, and my NP gave me a scrip for gabapentin to control the nerve pain.

I have not had to take this drug since 2017, when my hands fell apart and I needed hand surgery. It is strong. It makes me loopy and groggy. It exacerbates my blurred vision from Sjogrens. The side effects ease as my body adjusts, but it packs a punch. It also, thank goodness, brought my nerve pain under control. Would this have been unnecessary had I taken an antibiotic that wasn’t contraindicated with ibuprofen? I have no idea.

At least the gabapentin is helping me sleep. And keeping the nerve pain at bay. The levoquin appears to be helping, but I’ll be glad to complete this course and get back on ibuprofen. I have an appointment next week at the Wound Clinic at our hospital to find out how to heal the skin and grow back the nail on my finger—and, I hope, some new ways to prevent this from happening again.

Managing scleroderma is complicated. I’ve learned enough over the years that when I meet a new medical professional, I’m often asked if I am one myself. I’m grateful that I have access to excellent care and that, at least for now, my Medicare still covers it all (another topic for another time). I also am grateful that I can adv0cate for myself effectively. But it is exhausting. Doctors are overworked and miss stuff. You have to pay attention and do your research and speak up. There is no other option.

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: Stefano Pollio