Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Rescue Mission

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As you may have guessed by now if you follow my blog, I’m a bit of an amateur naturalist. Learning about all kinds of plants and creatures gives me joy. Sitting on our deck when I’m writing longhand (best way to pour out the first draft of a story), I love to watch the birds at our feeder and other wildlife going about their day (which can also distract me from my writing, or help provide the pause that summons the next sentence). Our feeders hang outside the kitchen windows, my favorite view as I eat breakfast or lunch.

So, I can report, with delight, that we saw another hummingbird on Sunday, pale olive green with a lemon yellow breast. It hovered and sipped, zipped away, then returned for another drink. I wasn’t nearby for other visits, but the nectar level in the feeder was slightly lower by evening.

However, apparently the hummingbird’s activity attracted some other visitors—bees. As we were leaving the house Sunday evening, I noticed them investigating the feeder. By the time we returned, there were no more bees crawling around it. They had all managed to fall inside.

What to do? Bees are important pollinators, essential to world food supplies, and honeybees are in serious decline due to a variety of factors, especially use of pesticides and other agricultural chemicals. At first I thought they had all drowned, but when I tapped the feeder, they started swimming. Then they started humming. It was as if they were calling for help. (Yes, I’m a softy with a writer’s imagination. But still possible.)

My hands are not facile enough to simply pick up the feeder and dump the contents, especially at risk of getting stung. But with salad tongs and long plastic kitchen spoons, I managed to unhook it and spill it on the ground. When I checked back a while later, most of the bees were still curled up on the grass, but at least one was wobbling about. The next morning, they were all gone. So either some other critter came along and had a feast, or they slept off their sugar high, dried out, and flew away. I hope the latter is true.

A little online research turned up a few ideas to avoid a repeat: diluting the sugar water solution to a 5:1 ratio, still sweet enough for the hummers but not as appealing to the bees, is my next step.

And so, Dear Reader, I hope you find some inspiration and fascinating drama in your own back yard. I’m taking a break for the next couple of weeks and will be back at the end of August. For those in the northern hemisphere, savor the rest of summer, and if you are down under, I hope the end of winter treats you well.

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: Leandro Fregoni

Fleeting Moment

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For Mother’s Day this year, my daughters gave me a hummingbird feeder. I’ve never had one before, and it takes some tending, but in the weeks since, I have faithfully made a sugar water solution (1:4 ratio) and hung the feeder on the corner of our deck, changing the nectar every few days so won’t spoil, and waited.

And for many weeks, no hummingbirds came to visit. I checked migration maps. Plenty of sightings in our region. But none here at home.

That is, until a week ago Sunday. We were sitting out on the deck with family, when all of a sudden, my cousin startled. A hummingbird had just hovered by the feeder. I had my back turned, though everyone else saw and marveled. Soon, it returned, along with a second hummingbird. This time I turned in time. Tiny, jewel-toned, they hung in the air, wings a blur, then zipped away toward a high branch of a Norway maple. Miraculous.

I made certain to change the nectar that night, so it would be fresh for the next day. Sure enough, Monday morning, the gold breasted hummingbird returned for a sip. I saw it a couple of times. But neither of these tiny fliers have returned, since.

I’m not sure if it has to do with the extreme heat of recent days. I’ve changed their nectar frequently, because it can easily spoil in 90+ degree weather. Still, no hummingbirds.

I hope they return. Hummingbirds are territorial, especially the males, and they remember location of feeders. Such beautiful creatures. Even if only for a moment, so worth the wait. A stunning reminder that each moment is precious.

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: Ramona Edwards

If a Tree Falls

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The day after the 2016 election, a crew from our city’s forestry department came to our house. We had requested that they prune dead branches on our Norway maple. But, to my dismay, they were actually planning to take the tree down. I ran outside and talked them out of it, and instead, they did the necessary pruning. I was far too upset about the election to lose a tree, too.

The Norway maple continued to bear new leaves each spring. A few limbs died off, but because it’s a city tree, our arborist is not supposed to prune it. Nonetheless, it seemed to be doing okay.

That is, until this past Saturday. Around 3 o’clock, I was relaxing and reading in our living room when I heard a strange crash. A large limb of the Norway maple had just fallen across the street. No warning. Thank God, no one was walking or driving by at that moment.

What do you do when a tree falls across the street on the weekend? I called 911, and the police said they’d contact the public works department. Our neighbors gathered round and exchanged surprise over our tree’s sudden demise. Cars turned back as they came upon the limb, which had made the street impassible. About an hour later, a guy from DPW arrived and put traffic cones on either side. He said it would be a while before a crew could come and deal with it. Another tree had also fallen elsewhere in the city, and the forestry department is short-staffed.

I went back inside to read. A few hours later, several of our neighbors kindly took it upon themselves to move the limb to the side of the street, so cars could drive by, and I thanked them. When the DPW finally came back, they said they would return on Monday. The entire tree would have to go, because it was clearly unsafe.

And so, yesterday morning, a crew arrived. They put the fallen limb and broken branches in a chipper and then proceeded to take down the tree. I counted its rings later—at least 35 years, and probably older. Decades to grow, an hour to fell. The house looks bare in front.

I plan to request a new tree be planted in its place, once the stump is ground down. I know it was necessary, this time, to remove it. At least I was able to give it nearly six more years to live, and no one was injured when its time came.

Years ago, I wrote a book about the history of our city’s urban forest and how it was suffering from neglect. That book struck a chord and helped to inspire a massive replanting program after a major infestation of Asian Longhorn Beetles about 15 years ago. Over the past year, I have worked with a small group of concerned citizens to create a long overdue Urban Forestry Tree Commission, to deal with issues like funding the forestry department, developing an effective citywide pruning program, and doing a better job of planting and stewarding our public trees. A week ago, our City Council finally approved members of the Commission, and it will begin meeting this fall. I was also appointed by the City Manager this past winter to serve on an advisory committee to help implement a comprehensive plan for our city to meet the challenges of climate change. So, it’s all the harder for me to lose a tree. But health and safety take precedence.

It’s trite but true: Life brings many surprises. All we can do is our best to meet the 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.

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