Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

On the Town

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I did a lot of walking last week, through and beneath the streets of Manhattan. The first half of the trip was business, the second half, pleasure—spending time with my sister to celebrate our birthdays, which are three weeks apart. And celebrate, we did.

From dinner at Ellen’s Stardust Diner, where the waitstaff are all Broadway hopefuls who belt out show tunes, to a walking tour of SOHO, Little Italy and Chinatown; from a lovely stroll up the High Line to a gourmet dinner and an outstanding performance of To Kill a Mockingbird—we had a great time. The weather was beautiful, for the most part. Our hotel off Times Square was surprisingly quiet. We discovered an excellent diner for breakfast and another for some of the best apple strudel I’ve ever tasted. And we started brainstorming our next trip together.

I’m happy to report that my new sneakers worked out pretty well. My feet certainly got tired, but not as tired as they usually do, and without significant neuropathy. Also notable: as I schlepped through the subway, to and from commuter rail, New Yorkers helped to carry my carry-on up and down steep staircases. Without my ever having to ask. Angels are everywhere.

Along the way, I enjoyed wonderful art, on the street and at the Met. Here’s a sampling for your viewing pleasure:

Art Deco with words for our times at Rockefeller Center
Also seen at Rockefeller Center
In front of 30 Rock
Street art in SOHO
Artistic and delicious pastry at Ferrara in Little Italy
Statue of Chang Kai Shek in Chinatown
Street art across from the Whitney Museum entrance to the High Line
Gardening on the High Line
High Line mural
Art Deco murals and design at the Hotel Edison
The Beatle’s original instruments at the Met’s “Play It Loud” exhibit . . .
. . . and some very decorative guitars
Berlin artist Alicja Kwade’s “ParaPivot” rooftop installation at the Met . . .
. . . and a spectacular view of the NYC skyline beyond Central Park

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.

 

Another Extraction

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So, I was hoping that my resorbing molar would hang in there at least until the summer. Not to be. After a brief hiatus a few weeks ago, the tooth began acting up, with no signs of abating. Last Monday, I realized I needed to take action, because the coming weeks are busy with Passover and travel plans, not to mention my birthday later this week, which I was not about to ruin with a toothache.

Fortunately, my periodontist was able to fit me in last Wednesday. I tried not to think about it too much in advance, and there wasn’t much time to angst, anyway. A good thing, because it is such an unpleasant experience. My periodontist is very skilled and has incredible patience, both essential to extracting a big molar from the back of my jaw when I can’t fully open my mouth due to skin that remains somewhat tight. But it’s a struggle—for both of us.

The main problem, other than simply getting all the tools in my mouth and the constant tugging at my less-than-flexible lips, was that the ligament surrounding my molar had been destroyed, thanks to scleroderma. This is the membrane that enables the tooth to wiggle when loose and be easily pulled out. Instead, as had been the case the last time I had this procedure done, the roots of my very big molar had fused to my jawbone. So he had to drill them out. Not fun. I tried to calm myself by listening to the soothing classical music in the background and focusing on my breath, which definitely helped.

Because he had to drill so deeply, it took a lot of novocaine to numb my nerves. He finally used a combination of novocaine and epinephrine, which has the advantage of intensifying the local anesthetic, but the very big downside of causing my heart to race and giving me the shakes for a while after the shot. I absolutely hate the stuff, but had not realized I hadn’t told them in advance. So that detail will go into my chart for next time.

The whole process of extricating the molar, taking an X-ray to see if he’d gotten the whole root, drilling some more, then inserting the bone graft and stitching me up again, took about two (very long) hours. Knowing it would be hours more before the novocaine wore off (my body processes anesthesia very slowly), I drove 45 minutes back to my home pharmacy, picked up medication (and was pleased that my new Medicare Part D pharmacy card works), got home, finished up loose ends of work, and then lay down with an icepack on my jaw. (Icepacks are tricky, because they can set off my Raynaud’s, but better to put up with that than have a really swollen face.)

Five days later, my jaw continues to heal. Swelling is receding. One of the stitches already fell out on its own, as expected. It’s not comfortable, but significantly improved from the nerve pain that was only going to get worse if I waited any longer. I charged the expense to one of our travel credit cards, so at least we’ll get some points from the ordeal.

I’m glad it’s over, and that it will be mid-summer, at least, before the next step of drilling and inserting the implant that forms the base for the crown. I’m also glad that the gap in my teeth is not visible, so I don’t have to look like Alfred E. Newman for the next nine months. I’m very grateful that we have the resources to deal with this, and I really, really hope that it will be years more before I have to go through it again.

And, so, another tooth bites the dust.

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: Daniel Frank

Mud Season

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It’s getting warmer and muckier here in Massachusetts—but not yet so consistently warm that the bugs are swarming. So, perfect weather for a walk in the woods this past weekend, albeit stepping carefully around muddy tracks and vernal pools. Life’s cycle of renewal always boosts my spirits in the spring. I hope it does for you, too. 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.

Perchance to Dream

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I’ve been having some trouble falling asleep, lately. I go through these bouts from time to time, when I’m trying to do too much and my mind is overstimulated, or when I’ve sat up at my computer too late, or when I watch too much news. Some of the solutions are obvious (plan in evening down time! no computer after 9 o’clock! don’t OD on the latest political crisis!). But I’ve also decided to use regular guided meditation in the morning to help me calm my thoughts.

I subscribe to Headspace, which is a great app with many guided meditation series to help with various issues. When I was dealing with my horrific ulcers the summer before last and the surgical aftermath, the series on pain management was a real boon. This time, I’m meditating my way through the sleep series, which includes both practical advice for good “sleep hygiene” as well as a mind-calming meditation to be done in the morning that helps you sleep better at night.

I was skeptical of how this would work, but lo and behold, after about ten morning sessions, I started to fall asleep more readily. I am less intimidated by the prospect of needing to fall asleep, which is the insomniac’s hamster wheel, and more able to relax. (Of course, now that I’m writing this down, who knows what will happen tonight?)

In any case, the meditation has an added benefit. Monday morning it was cold here, a drop from the mid-60s on Sunday to a wind-chilling mid-30s (welcome to New England). When I started my meditation, however, I didn’t have on any socks, because I’m ready for spring and didn’t feel like it. Of course, that meant my feet were ice cold. I wondered if meditating would improve my circulation. Sure enough, by the end of my ten minutes of visualizing a warm glow filling my body from bottom to top, my toes were actually a little pink. Not toasty, but not freezing, either.

Years ago, I had read how meditation could help Raynaud’s. I once even tried some biofeedback practice to see if it would make a difference, but didn’t have the patience to follow through consistently. Here was yet another reminder that the mind truly does influence the body. And ten minutes of calm in the morning certainly beats that nagging voice in my head urging me to start thinking-planning-doing.

I don’t expect my sleep issues to disappear, but at least it feels more manageable at present. And my toes are happier, 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.

Image: Cris Saur

A Question of Identity

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According to a well-known poem, March is supposed to bring breezes, loud and shrill, to stir the dancing daffodil, but so far, this most unpredictable of months just brought us a foot of snow. All area schools were closed on Monday, including the Goethe Institut in Boston, where I have been taking German classes since the fall.

I was quite disappointed. I look forward to my Monday night class each week. Not only is our instructor great, but also my classmates are a fascinating group of adults, from many walks of life, with many different reasons to pursue this singular goal: learning to speak and read German.

My own desire was sparked by our European trip last summer to honor the memory of my great grandparents, who died in a concentration camp near Prague in 1943. Our visit to Terezín and the Stolpersteine ceremony commemorating them in Berlin impacted me deeply, in ways that I found very difficult to verbalize and am still sorting out, months later. Upon our return, I suddenly realized that I needed to learn their language, the language of my mother and her parents and all my German ancestors, to process what is still beyond words for me in English.

This has turned out to be a highlight of my week. I am no foreign language maven, and I am forcing some rusty synapses in my brain to start firing again. But I am loving the challenge. Doing my homework—Hausaufgaben—is fun, a meditation of sorts that completely clears my mind of all noise and worries. There is just the puzzle to solve: How do you say that? What does it mean? How do these words fit together? How does it differ from English? Why are the words arranged that way? And how is the way that Germans think and express themselves—the way my mother as a child and her family thought and loved and argued and dreamed—how is that defined by and encapsulated in their native tongue, in a way that was passed down to me without my even realizing it?

So much of who we are is framed and molded by the words we use to interpret the world. My mother and her parents were formal people in many ways. So when I learned that, in German, you use the formal version of ‘you’—Sie— for addressing someone older, officials, and anyone you don’t know well until you’ve met them a few times, it suddenly all made perfect sense to me. That careful adherence to rules of social etiquette conveyed to me directly and indirectly by my mother was the way she learned to understand the world from her first spoken words. Such is the power of language.

When she was dying, 20 years ago this April, my mother reverted to German. Over and over, she murmured, nein, nein, nein—no, no, no. I will never know what she was referring to. I wondered if she had traveled back to her childhood, when she had to leave her homeland to escape the Nazis. So many years later, I wondered, had a part of her remained forever trapped in a time capsule.

The search for identity is a lifelong quest. We can become mired in tragedy, loss, trauma, a chronic disease that profoundly alters our whole way of being, and let that become the focus of how we define ourselves. But I’d rather keep pushing, discovering, learning more about the world within and without. I don’t know where this new passion will lead me, but the journey fascinates.

So, until next week, auf Wiedersehen.

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: Berlin graffiti seen last summer near Alexanderplatz