managing chronic disease

Darkness Into Light

Evelyn Herwitz · December 22, 2015 · Leave a Comment

Just before midnight last night, the Earth reached the point in its annual orbit when the North Pole tilted the farthest distance away from our Sun—23.5 degrees, to be exact. For those of us in the Northern Hemisphere, that means today, December 22, brings the shortest day’s worth of daylight of the year. Starting tomorrow, daylight grows incrementally longer.

I’m not alone in my feeling of relief every time we pass the Winter Solstice. People have celebrated the arrival of the “new sun” for millennia. Usually Hanukkah lands close enough to this day that, by the time we light the eighth candle, I feel like the long descent into darkness is over; this year, I had to wait another eight days, and it seemed like forever.

Of course, here in New England, just because the days are now officially getting longer doesn’t mean they will get warmer. Not by a long shot. Even though December has been exceptionally mild—heading toward the ‘60s on Christmas Day—come January, we will undoubtedly have colder weather. Last year’s mild December tricked everyone when we were socked with a brutally cold winter and more snow in Worcester than any other city in the country.

I write this, of course, because winter is just really hard on my Raynaud’s. I saw my rheumatologist last week, and we were joking that the only people who are happy about the warm weather here are people like me. Everyone else is wishing for some seasonal temperatures and at least enough snow to transform the landscape without making roads hazardous. Even the ski resorts can’t make snow because it’s just been too warm.

So far, the National Oceanic and Atmospheric Administration is predicting a milder winter in these parts. I have yet to have my snow tires put on my Prius. Usually I do this just after Thanksgiving. I know I should take care of this soon, before year’s end. But there’s been no incentive.

I’m not complaining. I am reveling in this weather for as long as it lasts. And I’m enjoying the psychological boost of knowing that there will be more daylight tomorrow, and the day after that, and the day after that.

Meanwhile, I’m looking for ways to brighten the darkness. Over the weekend, Al and I went to Tower Hill Botanic Garden to enjoy tropical plants in the Orangerie and Limonaia, the festive seasonal decorations, a performance of Renaissance and Baroque music celebrating the Winter Solstice and, best of all, the gardens illuminated at night by thousands of jewel-toned lights. I leave you with this view, to brighten your own dark nights as we await the return of longer days.

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.

Anniversary Waltz

Evelyn Herwitz · December 15, 2015 · 2 Comments

Last week, Al and I celebrated our 31st wedding anniversary. We agreed that we wouldn’t buy gifts. More important just to spend quality time together, a welcome break from the usual hectic midweek schedule.

We shared a quiet, delicious meal and a bottle of wine at our favorite Afghan restaurant. Then, on Saturday night, we enjoyed an extraordinary performance by Cirque de Soleil. And we began to plan our next trip for this coming summer—another special adventure to look forward to.

All of this was good and lovely and memorable.

But it was a very different kind of sharing on Sunday night that once again impressed upon me the blessings of our three-decades-plus marriage.

I was in the process of cooking dinner, when I reached out to open my small Cuisinart to chop up some parsley—and smashed the tip of my still-healing, infected digital ulcer on the gadget’s plastic top. It really, really hurt. Like slamming your finger in a car door.

I yelled and cursed as I walked in circles around the kitchen, trying to breathe my way through the sharp wave of pain. Usually this passes within a minute or so, but this time I really did a number on myself. The pain would not quit.

Al had been reading in the living room. In the midst of my outburst, he walked into the kitchen, opened his arms and gave me a big, soothing hug. It didn’t take the pain away, but it did help me to relax a little, the first step in gaining control of acute pain.

During the course of our meal, he proceeded to distract me, since I was still pretty uncomfortable. By the time we finished, with the help of some Tylenol, I was doing a bit better.

As Al washed the dishes, I reached into the cabinet near the sink for a mini Three Musketeers, left over from Halloween.

“You deserve that!” he said. I laughed, and agreed.

Just another episode of managing my scleroderma. We’ve been through this many times. He knows what to do, without my asking. And he never, ever complains about all the mishegas that this disease has brought to our marriage over these many years.

That is something worth celebrating. Love you, Al.

Image Credit: Naama y.m.

Slip Sliding Away

Evelyn Herwitz · December 1, 2015 · 1 Comment

November disappeared at midnight, slipping out the back door. No snow here yet, but the trees are mostly bare now, except for the oaks that hang onto their shriveled brown leaves well into winter. Temperatures have dropped, and I have to propel myself out of the house for my afternoon walk, bundled in my long down coat and warmest hat. Even wearing insulated gloves, my fingertips burn from the cold.

But walk I must, or I get far too stiff working at my computer much of the day. The fresh air clears my head and the exercise gets my heart pumping and blood circulating. It also helps me to remember what I need to do next.

All of my friends in their sixties joke and commiserate about our less-than-sharp memories. There are the words that won’t come when beckoned, the names that elude recall, the purposeful trips to one room or another—punctuated by the inability to remember why it was necessary to go there in the first place.

It’s reassuring to know I’m not alone in this, but I find it disconcerting, nonetheless. All too often, I’ve been misplacing things—my cell phone, or keys, or a book that I was sure I had in one room that seems to have walked to another all by itself. I’ve left the house, certain that I had everything I needed for the day, only to realize when I’m too far from home that I forgot something. I should use a pill minder to be sure I’ve taken all my meds on schedule, even as I hate to admit I need it.

I don’t know if this is simply due to the natural aging process or the fact that I need more sleep or some combination thereof. Hormonal changes since menopause certainly muddied the waters. I feel like my memory gets worse when the days grow short and it gets too dark, too early—it’s time to hibernate, and I just can’t hold as much information in my head.

I keep a detailed journal, files of correspondence and spread sheets to track my work for my clients. I’d be lost without those records. I maintain similar files for family business and long to-do lists. I have a notebook that I carry with me to all my doctor’s appointments, or I’d never remember our conversations. But I used to be able to manage all the day’s details without writing everything down. No longer.

I also can’t remember all the details of family history the way I once could. I used to have vivid memories of my childhood and our early years with our own children. Now, my younger daughter will mention an event that’s as clear as day to her, but I have to dig deep to picture it. Very frustrating.

I suppose that as the layers of memories accumulate over decades, there’s just that much more to sift through. But I want to be able to remember everything the way I used to. Ironic that I can remember how I used to remember. It’s just the what that’s acquired a mind of its own. I keep wondering if this is just a temporary state of affairs, or if I’ve reached some kind of tipping point that requires acceptance of the inevitable: the older I get, everything just takes longer, including memory recall. At least I have all my journals—a trunkful—to fall back on. And all of my other writing.

As for the immediate challenge of memory lapses, it’s time to develop some new strategies. I’m sure there are plenty of apps to help, although keeping a small notepad with me at all times is probably the best, most obvious, low-tech solution. As long as I can remember where I put my pen.

Image Credit: fabrizio turco

What Really Matters

Evelyn Herwitz · November 24, 2015 · Leave a Comment

At some point in the blur of my Facebook feed this past week, someone posted a cartoon that resonated. Two women are walking down a sidewalk, commiserating. One says to the other, “I want to stay informed, but I also want to keep my sanity.”

That is exactly how I’m feeling these days. I’ve had numerous conversations with friends about whether the news really is getting worse, or if we’re just hearing more bad news all the time because of social media.

It’s gotten to the point that I’ve had trouble falling asleep a few nights, overloaded by reports of terrorist attacks, backlash back home, predictions of how the U.S. electrical grid is vulnerable (Ted Koppel’s new book) and the hateful, xenophobic rhetoric of the GOP presidential campaign.

Not good for my health, or yours, or anyone’s. But how to strike the right balance? With so much at stake in this election year, I feel an obligation to keep on top of the news. But I really don’t need all the FB posts about the latest outrageous comments by Donald Trump.

I want to know what’s going on in the world, but there is only so much I can absorb about the latest terrorist attacks. Sadly, very sadly, some innocent people are killed every week, somewhere in the world, by terrorists. I’m struggling with this, but all the social media commentary and debate often do more to alarm than enlighten.

This past week, evil struck home with the death of an 18-year-old Massachusetts son, Ezra Schwartz, who was killed in a terror attack in Israel. He was an exemplary young men, and his death rocked the Jewish community here. My eldest attended his packed funeral on Sunday, because they shared the same summer camp. I woke up several mornings, thinking how his mother must be feeling. Heartbreaking. I can barely imagine what she is going through—and all the other mothers and fathers and sisters and brothers around the world who have lost loved ones to terror.

But at some point, I have to stop and just be here, in the present moment, grateful that I live on a safe, tree-lined street in a comfortable home. I need to focus on the gift of a loving, supportive husband and our two incredible daughters, each dedicating her career to helping others. I need to appreciate caring family and friends, a supportive community, my great consulting clients who enable me to work for myself successfully. I need to remember the blessing of an outstanding medical team that helps me to manage my scleroderma and stay as healthy as I am.

And I need to appreciate the fact that our country, with all of its serious problems, also protects freedom of speech—even if a lot of what I’m hearing these days is disturbing, to put it mildly. Staying informed is critical to our democratic process. I just don’t need to stay informed 24/7. Quality, not quantity of information is what really matters.

All that, and a sense of humor, and a good piece of dark chocolate are the only ways to stay sane.

Image Credit: John Nyberg

Civics Lesson

Evelyn Herwitz · November 10, 2015 · 4 Comments

9262539322_19fce888d4_z Last Wednesday, a member of our synagogue congregation died. Mel was 88, a soft-spoken man who never boasted of his distinguished academic career as a science professor at a local university, or of the science text he wrote that was used by thousands of college students nationwide.

A popular teacher, he was also a quiet and dedicated community volunteer, who could be relied upon for keeping meticulous minutes as secretary for several boards. He loved to hike and play tennis and be surrounded by his large extended family.

In recent years, his health had declined. He was reliant on oxygen and rarely went out, except to see his physicians. Tuesday morning, Election Day, he had gone with his wife to the doctor’s. All seemed fine.

From the doctor’s, they planned to pick up the one fast food meal he loved and could still eat. But on the way, Mel asked his wife to stop at our synagogue, which is our ward’s polling place. He was too weak to enter the building, so the police officer on duty brought a ballot out to the car so he could still vote. Afterwards, the couple picked up his favorite meal and drove home. He struggled to get out of the car. Inside the house, he collapsed. Mel died the following day.

On Tuesday, I had almost skipped voting. I’d returned from a business trip to NYC late Monday and was exhausted. I nearly forgot it was Election Day, only realizing it when I saw the note on my calendar that morning. It was “just” a municipal election, and I still hadn’t figured out whom to vote for. I was juggling client work and other responsibilities. The temptation not to bother was strong.

But I forced myself. I would have felt guilty if I’d let it go. A half-hour before I had to leave the house for another commitment, I quickly searched the Internet for reliable information about the candidates, made some notes and ran to the polls. It was far too rushed. I should have been paying closer attention to the election all along. But I felt better for voting. The mayor was facing a serious challenge from another candidate whose views and style were divisive. Whatever the outcome, I’d done my part.

As it turned out, the mayor won. But he could have just as easily lost. Only about 21 percent of registered voters in the city bothered to go to the polls.

One of those voters was Mel. The man was weak and frail and his heart was giving out. But he cast his ballot. His last public act was his final important lesson—voting matters.

So despite how busy or tired I am, how crummy I may be feeling, or how minor the election may seem, I will always remember Mel’s example, come Election Day. The right to vote in free elections is precious—never to be taken for granted. And every vote counts, right to the end.

Image Credit: Ingmar Zahorsky

managing chronic disease

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