Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Almost Autumn

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With Labor Day behind us and schools here already in session, it’s starting to feel like fall. The maples on our street began to drop leaves, a few at a time, in mid-August. A week post our vacation, the days are noticeably shorter, with sunset at about quarter past seven.

I find this time of year bittersweet. It’s hard to let go of summer, even as it’s a relief to be out of the 90+ degree Fahrenheit heat wave and soupy humidity of the weeks before our travels. At the same time, with schools in session, everyone back from vacations, and the Jewish New Year right around the corner, fall is always about new beginnings. Even as trees go bare, they are storing sugar for the long winter ahead and forming new buds.

We have one more big family celebration coming up this weekend, and then it’s time to focus, once again, on work and writing and election season, on putting away summer clothes and getting back into layers, on birds migrating south and trees hardening off. I’ve gotten away with only my thumbs in bandages for several months, and I know that is about to change as the temperatures drop and more ulcers appear. So it goes.

To everything there is a season . . .

(Click the link, above, if you can’t see the embedded video of Turn! Turn! Turn! with Judy Collins and Pete Seeger.)

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.

Dated

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Several weeks ago, after a heavy rain, I discovered that water had seeped into our basement and damaged a couple of cardboard boxes that had been lying around for far too long. So on Sunday, Al and I finally got around to sorting through the contents, to see what, if anything, was worth salvaging.

Now, of the two of us, I tend to be the one who wants to get rid of stuff that we no longer need. But one of the boxes contained items I was loathe to part with: all my old calendars and planners. Fortunately, my husband humored me, especially since I was able to find a place to store them, in chronological order—half a drawer in an old filing cabinet in the basement.

Why bother? you may well ask. The thing is, those calendars are a record of my life. Even as I have kept journals on and off over the years, I have always kept calendars. And this batch dates back to my freshman year in college. There are notes about deadlines for college papers, the weekend I almost broke up with my high school boyfriend (that happened a month later), searching for my first apartment in grad school, interviews I did while working as a journalist, preparing for my wedding to Al. There are also cryptic entries about the time, right after Thanksgiving the first year we were married, that Al had to have emergency surgery because his spleen ruptured from mono. These are landmarks of a lifetime.

At some point, I know I’ll need to part with them. When we finally downsize someday, there will not be room for all the memorabilia. As it is, I have my old college footlocker filled with journals dating back to sixth grade. And more journals on shelves in my office. Plus all my bullet journals of the past several years. Every so often, I’ll have a reason to dig back into them, to find when I did what.

All the more so, as my memory is not as sharp as it once was. My rheumatologists tell me that scleroderma can cause brain fog (beyond the aging process) and I definitely feel it settling in, a very unwelcome guest.

Do all the details really matter? I don’t know. Writing things down has always been my way to preserve the present and plan for the future. Now, all those notes, accumulated over decades, are my keys to recalling my past. And I’m just not ready to throw them away.

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.

Gotcha

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So, we were supposed to go on a 10-day vacation over the past week, at long last flying across borders to savor another culture. But Covid had other plans.

Three nights before we planned to leave, Al started coughing. Not your normal clear-the-throat cough, but a deeper, barking cough that woke me up a few times. Just to be on the safe side, the next morning I gave him a rapid test. The T line turned purple even before the C line emerged. Not good.

After I got over being upset (I was quite upset) I realized that we should just try to reschedule the trip. Which, by the end of the day, I had successfully done. I had purchased Covid travel insurance, and I am sending off a claim for the additional cost of the switched airline tickets this week. I don’t know if it will be honored, given that I didn’t actually cancel the flights, but it’s worth a shot.

Meanwhile, Al and I both had PCR tests. His came back positive the next day, and mine, negative. But by Friday, the day we were supposed to leave, I was starting to feel crummy. Two negative rapid tests were not much consolation. Sure enough, Saturday morning my rapid test was definitively positive.

This all happened despite our both being fully vaccinated and double boosted. As has been widely reported, the current dominant strain of Omicron, BA.5, is highly contagious and can evade some of the vaccines. We have no idea how Al picked it up. And even as we did our best to mask around each other and for Al to isolate, it didn’t matter. I still got it.

Fortunately, Paxlovid, the anti-viral medication for Covid that is provided at no charge by the federal government, is a game changer. It made a huge difference for both of us. There are reports of side-effects and also significant contraindications for certain medications. I had to stop two of my meds in order to take the five-day course. The only side effect that I was aware of was the bitter aftertaste it leaves in your mouth. But that is a very small price to pay for stopping Covid from replicating itself in my body.

Before Paxlovid, I was experiencing aches, chills, overactive Raynaud’s, a lot of congestion plus very runny nose, and a really sore throat (like severe strep, hard to swallow because it hurt so much). The day before I tested positive, I also experienced a sudden bout of vertigo, and until the Paxlovid took hold, migrating pins and needles, not unlike shingles. Oh, and my heart rate sped up and my arrhythmia kicked in. No fun.

Within 36 hours of starting the Paxlovid, all of this began to ease up. It felt miraculous. There is no doubt in my mind that if I hadn’t taken all the precautions of vaccines and boosters ahead of this, I would have been in much worse shape. And the Paxlovid really helped to turn things around. Risks of long Covid are real, especially when my immune system is already compromised from both scleroderma and Sjögren’s Syndrome. Even if I experience a Covid rebound (which can happen after stopping Paxlovid), I’m confident that another five days on Paxlovid is worth it, and quite manageable. So far, so good.

Happily, we are both on the mend. Fatigue is still a factor, but not as bad as previously. I tested negative with a rapid test eight days after my positive test. PCR results may remain positive for a while because they pick up fragments of the virus, even when you’re no longer really contagious.

In any case, I intend to wear my mask in public long after I need to (five days past the five-day isolation period) according to post-Covid protocol. Just to be careful. I do not want to get re-infected, especially in the weeks leading up to our rescheduled trip.

I hope you are well and free of all this. I am grateful for all the medical advances that enabled me and Al to get better relatively quickly and never get severely ill. Covid is not to be messed with. Stay safe.

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: Gratisography

Airborne Again

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After 27 months of mostly staying put, I finally got on an airplane once again. And, just as I did in March 2020, right before Covid shut down the world, I flew to Philadelphia to see our younger daughter. We had been planning this visit for months, hoping that neither of us would contract the virus last minute and have to scuttle the trip. Thank goodness, we both tested negative on Thursday night, the evening before my Friday morning flight.

And so, I found myself back in the stressful world of air travel, with its crowds and TSA checks and worries about whether my flight would actually be on time or late or, at worst, cancelled due to lack of available aircraft or staff. Thank goodness, the weather held, the flight was on time, and I survived feeling squished in a cramped, worn-out seat. And yes, I wore a mask from the moment the shared van picked me up at home until I stepped out into the warm June morning and found my daughter, waiting for me in her car.

And we had a great visit. Photos below include some of the highlights: a walk through the Magic Garden of mosaics in South Philly, my first in-person view of the Liberty Bell, an abortion rights rally outside the National Constitution Center—one day after the Roe decision came down from SCOTUS—with Pennsylvania Attorney General Josh Shapiro (Democratic candidate in the crucial gubernatorial race this fall) and 1,500 citizens, a stroll down historic Elfreth’s Alley, and a brief but wonderful tour of Independence Hall and “the room where it happened”—debates over the Declaration of Independence, the Articles of Confederation, and what was to become the U.S. Constitution. Oh, and a lot of great meals.

Flying back on Sunday morning was a bit less smooth: my flight was delayed about 25 minutes because the co-pilot had to arrive from a separate flight, due to last minute staffing issues. Given all the SNAFUs that could have evolved from that one logistical issue, including a delayed arrival of the co-pilot leading to time-out issues for the rest of the crew (yes, this once happened to me), it was a relatively minor inconvenience. Overall, the trip was a home run.

How appropriate to visit Philadelphia at this critical inflection point in our nation’s history, how meaningful to be able to share it all with my younger daughter—and how great to feel like I can travel afar, relatively safely, once again.

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.

How My Garden Grows

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I may get a purple thumb from Raynaud’s, but I no longer feel resigned to a purple thumb for plants. At least, as far as my year-old bonsai is concerned. My little Brazilian rain tree grew so lush over the past year that it needed quite a haircut this weekend, when I went back to the bonsai garden for a lesson in pruning.

This involved a bit of serendipity, or “going with the flow” or just trusting that things would work out. I had signed up for a class that I thought was about pruning, but actually was intended as a workshop for a specific bonsai technique called candling, which involves trimming away new growth on certain bonsai pine species. As it turned out, however, I was not the only one who misunderstood the workshop description, because two of the other students who came also had tropical trees, and the fourth person had the wrong species of pine.

No matter. Our teacher was very flexible and turned the session into a learning opportunity for each of us to do the pruning that our bonsai needed. Since I got there first, he was able to help me reshape my Brazilian rain tree to reveal more of the trunk and also to remove the wiring that we’d used to train it last summer. In fact, the tree had grown so much that the wiring was starting to bite into the trunk, so my timing was good.

And I was also able to accomplish my second goal—starting a new bonsai. I had hoped I could do this without signing up for a separate beginner’s class, and timing was, again, just right. For months I’ve been wanting to have an evergreen bonsai, a juniper, and I found the perfect little tree, with a beautiful recumbent swoop, and an aqua pot, just as I had imagined. With my teacher’s help (I can’t do some of the twisting and tightening of wires that’s required for anchoring the bonsai once its roots are revealed) I potted my new little beauty.

Now both bonsai are enjoying fresh air on the deck, near the hummingbird feeder that awaits a visitor and the bird feeder beyond the kitchen window that is filled with safflower seed—a favorite of cardinals, chickadees, house finches, house sparrows, and especially mourning doves, which are just beautiful to see up close. Squirrels, however, are not fans, which was my hope. No more jumping on the “squirrel-proof” feeder to spill sunflower seeds all over the ground.

Watching the birds and my bonsai is a true source of fascination and calm. Whatever craziness dominates the news soon dissipates as I sit down at the kitchen table and look out the window, or quietly sit on the deck and make myself part of the scenery, so the birds come to visit. We all need a personal oasis these days. I’m grateful to have found mine right  in our backyard.

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.