Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Summer Solstice

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At Stonehenge in England this past Friday, about 10,000 people gathered to watch the sun rise in perfect alignment with the entrance to the ancient stone circle. The summer solstice has come and gone in the Northern Hemisphere. Even as we mark the beginning of warm summer months, the days are now growing shorter once again.

Somehow, I wish the days could just stay longer for a little while. Even as we have months of (I hope) balmy weather ahead, there’s something that always makes me a little sad when the solstice passes, and our half of the Earth begins to tip every so slowly away from the sun for the next six months. It’s all in my head, I know. But still.

My hands and feet are just so much happier during the long days of summer. That is, of course, so long as I stay out of overly air-conditioned buildings. I took advantage of a sale this past week and got some new wrist warmers to add to my collection—as essential in the summer when stores and restaurants insist on maintaining arctic temperatures, as in the winter when arctic air blows into New England from Canada.

At least I can now take my neighborhood walks without a jacket or even a sweater. It’s easier to get out the door for appointments, too. Less stuff to put on.

Time to savor summer, even as daylight slowly dwindles.

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: Hello I’m Nik

Gray Matter

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It was a beautiful weekend here in Central Massachusetts, sunny, warm, light breeze, no humidity. Walking the neighborhood was a real pleasure. Despite the lovely weather, however, I spent quite a few hours pouring over my German textbooks and dictionaries. We have a unit test in class Tuesday night, and even though it’s meant to check our own understanding and has nothing to do with grades (there are none), I don’t want to totally embarrass myself by leaving half the questions blank.

I am one of the oldest, if not the oldest member of our class. There is one other woman in her sixties (I think), a few fifty-somethings, a lot of twenty- and thirty-somethings, and one recent high school graduate. It is quite clear to me that a younger brain is more adept at learning a new language. I understand more than I can say, but when our teacher asks a question, my gray matter freezes up. Honestly, there are times, even with my strength in English, that the curtain drops in my brain when someone asks me a question these days, and I can’t find the word. All the more so in German.

However, I have noticed that some words come more readily than others. For instance, I have an easier time remembering German words for clothing (die Kleidung) than for housework (die Hausarbeit). Clearly, personal interests play a role here. On the other hand, gendered nouns are a real challenge. Why, for example, is a skirt masculine in German (der Rock), a dress neutral (das Kleid) and pants feminine (die Hose)? There are some clues in the spellings, but still. No way out but memorization. Which is a struggle.

Our test includes units on clothing, weather and festivals, as well as grammar for comparisons, favorites, explanations, and what you might wish for. Of all these topics, I particularly enjoyed learning weather vocabulary (being a weather nerd). It helps that many of the words are similar to English. Wind is, well, der Wind (although the ‘w’ has a ‘v’ sound). The sun is die Sonne. Rain is der Regen.

My favorite discovery in this particular chapter, however, was the phrase es donnert und blitzt. Which means (no elegant translation) that it’s thundering and lightening is flashing. This answers a conundrum from my childhood, in hearing The Night Before Christmas, why old St. Nicholas named two of his reindeer Donner and Blitzen. Who knew?

Overnight it may well donnert und blitz, as I write Monday evening. At least, that’s what the weather report says. But I’m glad to have enjoyed viel Sonnenschein this weekend. Now, if I could only clear der Nebel (the fog) that hinders my vocabulary recall, I’ll be all set.

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: Stefan Widua

Lemonade

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Al is back home, from Israel, and so am I, from a lovely weekend in Florida with cousins I had never met. Last fall, my second cousin contacted me out of the blue, having found me online (this, we agreed, was both amazing and a little creepy, given how much information is out there that we don’t know about) to send me a host of family memorabilia she had saved from her parents’ home when she moved them to live near her a few years ago. That message evolved into a correspondence over the winter, and this weekend I went to meet her and her nonagenarian parents for the first time.

We had a great visit. And I’ll write about that for a future post. But what I want to write about today is my crazy travel experience, no thanks to American Airlines.

All went smoothly on Friday for the first leg of my trip, from Boston to Charlotte, N.C. But as soon as our flight landed, I received a text from American that my connecting flight had been cancelled. They automatically rebooked me . . . on a flight to northwest Florida that left close to 10:00 p.m. This would not do, as it would have been a nine hour layover. Fortunately, I was able to get on a flight that left closer to 6:00 p.m., and the time zone switch saved another hour at my cousin’s end. She was most understanding, and so now I had just five hours to kill.

Then I remembered: a friend and former colleague of mine from my days as a college marketing director lives in Charlotte. On a whim, I sent her a message. Maybe she’d be available to get together? Total long shot. But, as I was finishing lunch in the airport’s huge atrium, I received a text back. Not only was she available—she was on her way to the airport with her family, heading for a weekend family graduation get-together! What are the odds? I met her at the gate for her flight, and we spent a wonderful hour catching up. Hadn’t seen each other in 14 years.

My rebooked flight boarded about an hour later, and soon I met my cousin and was off on our family reunion adventure.

Sunday afternoon, my cousin dropped me off at the airport to return to Boston. I’d been saying auf Wiedersehen instead of goodbye, because her parents were originally from Germany, like the rest of my mother’s family—it means until we see each other again. I didn’t realize how literal that would become.

The gate for my flight back to Charlotte was jammed, not only with travelers for my 4:00 p.m. flight, but with unhappy travelers for the earlier flight to the same destination who were now delayed and on standby for my flight. But our flight didn’t board. And didn’t board. And didn’t board.

The story we were told was that the flight attendants had not yet arrived (although they were apparently staying at a nearby hotel). When I asked the gate attendant what was going on, he said, “If I told you the story, you wouldn’t believe me.” “Try me,” I said. But he wouldn’t take the bait. He did, however, help me to rebook my flight for the next day. By the time I left the airport with my cousin, who kindly put me up for another night, the flight still hadn’t taken off. According to my Flight Aware app, it eventually landed four minutes after my (also delayed) connecting flight departed.

Now, the complicating factor was that Al was returning home from Israel on Monday evening, and I was planning to pick him up at Logan. But my new schedule meant that I’d get back to Boston (if all went well) at 5:00 p.m. No time to go home and come back. Instead, however, I worked out an arrangement with the van service I had planned to take back on Sunday, to pick us both up Monday evening. Since Al was flying Air Canada, he was arriving at the same domestic air terminal as I was, from Charlotte. Fortunately, I was able to store my carry-on in one of the last overhead spaces on my flight (I was in boarding group 8) so I could stay inside the main terminal, have dinner, and just meet him at the exit point for Air Canada, as opposed to hanging around baggage claim.

Amazingly, this time, my AA flights went like clockwork, and Al’s long-haul flight to Montreal and return to Boston did, also. We both made it through large airports for our connections. I had a nice meal at Legal Seafood. And we got to ride home together without me having to drive, a good thing, because I was pretty tired.

So, that’s how I spent my weekend. Glad to be back. Glad I went. Glad it all worked out so well, in the end.

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: Francesca Hotchin

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