Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Upon Reflection

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It’s dreary and raining this Sunday afternoon. I’m writing now because Yom Kippur, the Day of Atonement and highest holiday in the Jewish calendar, starts this evening and goes through Monday, which is the day I normally write this blog. It’s a somber day that caps a period of self-reflection. We’re supposed to think about who we’ve wronged during the year and make amends. We’re supposed to ask hard questions: How can I do better, be better to my family, friends, my community, in my relationship with God?

I wish I felt better prepared. I haven’t been able to find time to think about all of this in advance. So tomorrow will be a crash review of the year and what I need to improve on.

I know a few things. I need to be more patient with those closest to me—and with myself. I cannot be or pretend to be Wonder Woman and do everything for everyone else who needs me. Sometimes it really is best to step back, even if my ego says I could/should step forward.

There’s more, much more, to contemplate. It seems like an onerous task, at first, but by sundown on Yom Kippur, I always actually feel clearer and lighter—not just from fasting, but from introspection.

And so, to all who observe this holiday, I hope you, too, had a meaningful day. Whatever your faith or beliefs, be 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: Walter Walraven

As the Leaves Begin to Turn

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It always surprises me this time of year to see leaves already dropping from the trees on our street. I mean, come on, it’s still technically summer here in New England! But the days are growing noticeably short, and less sunlight means less photosynthesis. So, yes, the leaves and other green plants are shifting into autumnal mode.

Al and I took a short hike on Sunday afternoon along a trail by a mill pond for a long-abandoned cider mill not far from our home. It was a bit too buggy for my taste, but the foliage was lovely and the air was moist and rich with the scent of forest duff. Here are a few photos. Enjoy (without the mosquitoes)!

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.

Surf’s Up

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I love the ocean. I wish we lived close enough to walk the beach every day. I find the rhythm of the waves mesmerizing, and the moist sea air really helps my dry eyes, nose, and mouth due to Sjogrens.

Recently, I discovered a meditation technique called Ocean Breath, or Ujjayi Pranayama. It basically involves slightly constricting the back of your throat as you breathe in and out, mimicking the sound of waves rushing in to shore and receding. Here’s a link that describes the practice.

As always, there’s a caveat. If you have heart or lung issues, check with your doctor, first.

I’ve been using a guided meditation on the HeadSpace app, which I find extremely helpful, that varies a bit from the above instructions. It takes practice, but it’s quite soothing. You can do it any time of day or night. Great for easing into sleep, waking up in the middle of the night and finding your way back to sleep, or just whenever you need to take a stress-reduction break.

Breathe 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: KOBU Agency

Dappled

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There’s a word in Japanese for the light that filters through trees:

Transliterated as komorebi (kō-mō-reh-bee), it is made up of the Japanese characters for tree, leaking, and sun—meaning, literally, the sunlight that leaks through trees. Komorebi refers to the ever-shifting way that sunlight filters through tree branches and boughs, creating dancing patterns on the ground and illuminating the backside of leaves. It’s one of my favorite things to discover when I walk outdoors. And I love the fact that there’s a Japanese word to capture that sensation.

So, when Al and I took advantage of perfect summer weather on Sunday, we went to Garden in the Woods, a 45-acre refuge for native plants in Framingham, Mass., and I tried to capture komorebi with my iPhone’s camera, as well as some delicate plants—and, of course, some turtles. It made for a lovely, peaceful afternoon. Here’s what I found. 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.

A Day in the Life

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I’m heading into one of those periods when I have at least one and often two or more medical appointments each week for several weeks. Last week I met with our PCP to evaluate my sore back. Turns out it’s not a pulled muscle; it’s sciatica. Ugh. Treatment remains the same—lidocaine patches, OTC pain meds, heat or cold as needed, gentle stretching, no heavy lifting, rest, rest, rest. I’m slowly improving, able to sit and write at my computer again and drive longer distances, take walks. Sleeping soundly. All that is good, but I wish it would just go away.

My resilience was put to the test the next day, when I had to get up very early to drive in rush hour traffic to Boston for a 9:00 a.m. echocardiogram to assess my pulmonary hypertension, followed by a later morning appointment with my cardiologist. I did okay on the long drive, knowing from experience that I could lie down and doze during the echo, depending on how the tech handled the ultrasonic probe. Fortunately, he had an excellent, light touch, and I was able to rest for most of the half-hour procedure.

I found a cafe not far from the clinic and roused myself some more with an excellent breakfast. Then, after getting my sense of direction mixed up and walking a few blocks the wrong way (more tired than I thought), I realized my mistake and walked back to the clinic with 10 minutes to spare for my next appointment.

I was led to an exam room right on time for an ECG. But my cardiologist was backed up, so I was sent back to the waiting room for a while. Maybe a half-hour later, I was ushered into an exam room again, only to sit and wait for another half hour or so. This is when my iPhone is a necessary companion. I kill a lot of time in waiting rooms doing The New York Times crossword and other puzzles.

At last my wonderful cardiologist arrived, apologizing for the delay. Turns out there was a crunch of patients who showed up all at the same time. In any case, we reviewed my echo preliminary results, which were stable. Always reassuring. Pulmonary pressures were good. He noted, as he has previously, that I have some fluid around my heart, a bit more than is normal, which he attributed to some stiffening of the heart muscle due to scleroderma, which apparently impedes normal fluid absorption. Nothing to worry about, but important to track. He ordered some blood work to rule out any inflamation. We compared notes on sciatica. He’s lived with numbness in his left leg for years.

Then it was down to the lab for a blood draw. I had some other tests for my new GI specialist from a previous appointment that I could not complete at the time, so I took care of all that. The phlebotomist’s name was also Evelyn, so we bonded and chatted about our different nicknames (she goes by Eva and I, by Evie). I informed her that I have small, rolling veins, which can be an issue for getting stuck easily, and she used a butterfly needle, a good thing, because there were six vials to draw.

That accomplished, I drove home, which only took an hour, given no traffic midday, then stopped at the pharmacy to pick up a refill. By the time I got home, seven hours had elapsed since I’d left. I plugged in my heating pad and took a much needed nap, which enabled me to get some work done at my computer later that afternoon.

I’m always grateful for all of the excellent medical care. I’m also grateful when I can have some days off from all those appointments. Sleep is essential. Pacing is everything.

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: Jackman Chiu