Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Getting a Boost

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I got my Covid bivalent booster vaccination last Thursday—Pfizer this time, as opposed to Moderna up until now. I scheduled the shot for mid-afternoon, knowing I could set aside Thursday evening and Friday for down time if I got sick, as expected from past experience.

While I did get draggy and had some achy joints, I was very pleasantly surprised that, this time, the aftermath was not debilitating. No rash at the injection site. No real brain fog (other than my normal age-and-scleroderma baseline). I was able to sleep through the night. I modified my morning exercises to accommodate my sore left arm, but otherwise went about my day, editing a blog for a client, writing more in Novel 2. It was only by late Friday afternoon and evening that I ran out of energy. But by Saturday morning, most of the aches were gone.

I don’t know if this is because I went with Pfizer. From what I’ve read, the two versions are effectively equivalent and highly successful in reducing risk of severe disease from both earlier Covid variants and Omicron BA.5. Maybe there has been something in the Moderna vaccine chemistry that wallops me. In any case, the FDA says it’s fine to mix-and-match the vaccines, so I decided to try Pfizer and see if I could tolerate it better. That seems to be the case.

I chose not to pair the booster with my annual flu shot, because I wanted to get over whatever side effects I’d have from the former before adding in the latter. Now that I’m over 65, I get the super-duper flu shot (a friend called it “the old geezer shot”), and I need to pace myself. So that’s scheduled for this coming Thursday.

Fortunately, it is super easy to get vaccinated. Both shots are free and readily available at many local pharmacies. One piece of advice: don’t count on a walk-in. I thought that would be possible, given all the reports that there has been no run on the bivalent booster, but found out when I arrived without an appointment at my local CVS that I definitely needed one. The online appointment scheduling is simple and takes only about five minutes.

I hope your experience with the bivalent booster goes well. Please don’t wait. Flu season is upon us here in the Northeast, already intensifying in the southern U.S., and new, wily Omicron variants have also hit our shores. We have the tools and a lot more experience than we did two-and-a-half years ago.

Stay safe out there.

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.

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Backyard Ramble

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On Sunday I was feeling cranky. We needed to clean the house. I needed to get my Covid bivalent booster, but I didn’t have an appointment. Too much to do, not enough time.

Fortunately, my wise husband convinced me to get outside on a beautiful fall day to show me a new trail he’d discovered. Our Fair City has many hidden hiking trails that are a short drive from home, and he loves to explore them. This one was once home to a cider mill that has long since disappeared, but the field stone foundation remains, as well as two mill ponds and a stream that once powered the mill. The trail winds around the ponds and stream amidst oaks and maples and white pines and sassafras. Walking through the stunning fall foliage was just the antidote I needed, and I returned home refreshed. As for my booster shot, it can wait until Thursday. Hope you enjoy the view . . .


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.

New Tree, New Year

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Friday afternoon, we planted a new tree in our front yard. Ever since our city-owned Norway maple dropped a huge limb across the street this summer, I’ve wanted to make up for the loss. So we are now the proud parents of a persimmon sapling, which will (we hope) bear some tasty fruit in three to four years.

It seems a fitting way to begin the fall season—and a fitting way to mark the Jewish New Year, Rosh Hashanah, which began Sunday evening and continues until sundown tonight.

Planting a tree suggests many metaphors, for life, for abundance, for repairing our world. On a more personal level, I just happen to be a tree lover. The variety of species, alone, never ceases to amaze me or to remind me of the incredible diversity that makes our world so exquisite. Our persimmon has smooth, shiny green leaves that will turn a deep orange later in the season. When mature, it will reach ten to twelve feet in height and crown diameter.

Soon enough it will be whipped by wind and snow, but our landscaper, who specializes in sustainable, edible plantings that are appropriate for our region, assures me that it will sprout stronger roots in response to whatever fall and winter bring. So I will soak it twice a week and undoubtedly worry if the weather turns harsh and watch it adapt and grow.

It’s hard to believe that such a thin stalk will provide shade and food in a few years. But the act of planting a tree is an act of hope. And so, Dear Reader, whenever and however you mark the year’s turn, take heart. And consider planting your own tree.

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.

Beautiful

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One of the scariest aspects of a scleroderma diagnosis is to realize how deforming this disease can be. Everyone is different, and how your body changes will be unique to you. Early on in my progression, the skin on my face became so tight that I began to have discomfort blinking. For some, this facial tightening can make it impossible to close lips over teeth. It can reduce your hands to look clawed. At its most virulent, it can make obvious the skeleton beneath.

For all those who live with scleroderma, this is a terrifying prospect. For women, especially, among whom the disease is four times more prevalent, and especially for young women, it can be a harsh sentence in a culture that puts such a premium on youth and physical perfection, narrowly defined.

I have been extremely fortunate that, over the forty-plus years I’ve lived with scleroderma, my skin loosened. I credit the use of D-penicillamine, with which I was initially treated. Six months after I started taking the medication, I began to once again have face wrinkles. Therapies have advanced significantly since then.

Nonetheless, my skin is still not normal on my face, particularly around my mouth and eyelids, and in my fingertips. It has been a long adjustment to aging prematurely. That is why I found this interview with Chloé Cooper Jones, author of the recent memoir Easy Beauty, to be so apt and powerful.

Cooper Jones, who was born with a rare congenital condition called sacral agenisis, has spent her life living with reactions to her visibly disabled body. A writer and philosopher, she explains the difference between the kind of beauty that seems obvious (a sunset, a Monet painting) and that which is more complex and difficult. Her conversation with sociologist and writer Tressie McMillan Cottom delves into the ways we define beauty, what makes beauty intrinsic, and how we view and live with disability.

It is insightful and inspiring. It’s given me some needed perspective as my body continues to age and I contend with my own scleroderma. I hope it does for you, 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.

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Things That Go Bump in the Night

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Returning Sunday afternoon from a four-day weekend in Raleigh, North Carolina, for a very sweet family wedding and a celebration of our elder daughter’s birthday with friends and family, I was exhausted. It was our second trip in just two weeks, and per usual, I managed all the logistics—which I enjoy doing and am good at, but there’s always a lot to track. So, it was great to get home, with no more responsibilities for anyone else, and go to bed early.

I slept for ten hours. At some point, maybe around 3:00 a.m., I suddenly woke because I thought I heard a loud musical note. Yes, I know, that sounds weird. It was. Some kind of plucking of a stringed instrument or a bell or what, I can’t recall. But it was quite distinctive. I became conscious enough to realize I’d imagined it and, thankfully, went back to sleep.

This is not the first time I’ve woken from a loud noise that wasn’t there. Occasionally I’ve roused because I’m sure the telephone rang (we still have a landline, believe it or not). Then I’ll realize it didn’t and go back to sleep.

So, after Sunday night’s weirdness, I looked online for hearing loud noises in your sleep. And, sure enough, the phenomenon is real. In fact, it has a very evocative name: Exploding Head Syndrome (EHS).

No one knows what causes EHS, but apparently it is more common among women. It doesn’t harm your health, and there is no known cure. It may be triggered by fatigue and stress. It also may be related to damage or dysfunction of the inner ear, which, in my case, seems a possibility, given that we had just flown, which affects pressure in my ears, I have occasional episodes of vertigo due to loose crystals in my inner ear, and have had tinnitus in both ears for decades.

In any case, at least now I know what’s going on. And given all the distressing craziness of our world these days, knowing that my head actually is exploding surely fits 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.

Image: David Matos