Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Imagine

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Passover this past weekend was extra special. A few hours before we were scheduled to begin our seder on Friday night, we learned that one of our cousins received the all-clear on her lymphoma, following six months of chemotherapy. There were big hugs all around when she and her family arrived for dinner.

A central theme of the seder is retelling the story of the Israelites’ Exodus from Egypt, as if you, personally, were escaping from slavery to freedom. The word in Hebrew for Egypt is Mitzrayim, which means “a narrow place.” So the metaphor had exceptional resonance at our table that evening, and again Saturday night, when we repeated the seder at our cousins’.

Then, on Sunday, I learned that the beloved husband of a childhood friend had died the day before of ALS. They were married only a few short years. The words of comfort I shared with her seemed so shallow compared to her loss.

Our bodies can betray us in so many ways.

There are never any guarantees that a treatment will work for a particular disease for any given individual. I am profoundly grateful that our cousin has responded so well to chemo and is on the path to full recovery from cancer.

My friend’s husband, however, had no such options. ALS has no cure, although research is progressing to identify the genetic underpinnings of the disease and treatments that may slow the deterioration of nerve cells.

According to the ALS Association, about 30,000 Americans may have the disease at any point in time. By contrast, figures from the American Cancer Society project more than 1.6 million Americans will be diagnosed with one of the four major forms of cancer this year—colon/rectal, lung, breast and prostate. And that’s not counting the myriad of other ways cancer can attack our bodies. No wonder a preponderance of research dollars go to finding a cure for “the emperor of all maladies.”

Scleroderma research for a cure faces similar hurdles as ALS research. With Congress deadlocked over basic federal spending issues, let alone medical research for rare diseases, the need to find other resources to support this important work has never been greater.

Where could it come from?

Here are some mind-blowing figures:

It’s not that we as a nation don’t have enough money to support medical research for rare diseases. It’s just a matter of priorities and the need to make a commitment, as a society, to be responsible for each other’s well being and not only for ourselves.

Imagine, for a moment, what it would be like to live in a country where we spent more on finding a cure for scleroderma or ALS or any number of horrible, painful, debilitating diseases than we do on all those half-eaten snacks that get tossed in the garbage.

Imagine.

Then please consider donating to the Scleroderma Research Foundation or the Scleroderma Foundation—or to the ALS Association.

Thanks for listening.

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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

Priceless

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This January marked 30 years since I first met my rheumatologist. Al and I had just married a few weeks earlier. My internist had set up the appointment because my fingers had swollen so much, for no apparent reason, after we ordered our wedding rings, that my ring was too tight when we picked it up at the jeweler’s.

Blood work revealed a positive ANA. I didn’t really know what that meant—that my immune system was attacking healthy tissue—and I almost cancelled the appointment because it seemed like a waste of time.

But that January day, my new rheumatologist explained to me with compassion, patience and insight, chances were that I had either rheumatoid arthritis, lupus or scleroderma. I was in total shock, completely unprepared for such a serious set of options. He answered all my questions, took all the time needed to help me absorb the frightening news. I went home very shaken, but I trusted him.

We were both in our thirties, then. He’s still my go-to guy here at home, complementing my rheumatologist at Boston Medical Center—another wonderful doc who is also now in his sixties. I trust him implicitly, too.

Both of them have followed me for decades, listened to all of my anxieties about this very complex and scary disease, given me excellent advice, understood my aversion to new medications, my fears of hand surgery, my many worries about what’s next. They have encouraged me, cheered my forays into dance classes and Pilates, empathized with my pain from infected ulcers and praised me for my meticulous hand care.

They’ve also given me hard advice that I’ve needed to hear—like the reality check after I gave birth to Emily that it would be far too risky, despite my postpartum delusions about how great it would be to have more babies, to go through it again. “You were really sick,” my hometown rheumatologist told me, straight out. Of course, he was right. I had developed pre-eclampsia at 34 ½ weeks, and by the time I was in labor, my kidneys had shut down and my blood had nearly stopped clotting.

My BMC rheumatologist was the one who pushed me to take exercise seriously in order to stay strong and retain as much range of motion as possible. “Find something you love to do,” was his wise counsel. “That way, you’ll stick with it.”

At a recent visit in Boston, the two of us were joking about the indignities of being mistaken for seniors—but still wanting the senior discount. It will only be a few years until we’ll both be legitimately eligible.

So, in the back of my mind is a new worry: What will I do when these two wonderful physicians, who have been so much a part of my life in coping with this awful disease, finally decide to retire?

It’s no small concern. I know there are other excellent rheumatologists around who are younger, well educated, experienced and will provide fine care. But it won’t be the same.

These two men don’t simply know my diagnosis, blood work, X-rays, pulmonary function tests, echocardiograms, medications, allergies, long history of infections, difficulties with infusions and all the other data points that make up my megabites of digital medical records. They know me. And they genuinely care about me—and I, them.

At some point, I will have to make a transition to a new dynamic duo. I must trust that each of them will hand off to another rheumatologist who will provide a comparable level of excellent care. I’ve been very fortunate to have found them both. I hope my luck will hold, because my scleroderma shows no signs of retiring at 65.

In the meantime, I hope each stays in good health and decides, despite all the frustrations of practicing medicine these days, to stay with it, and with me, for a long time to come. In a health care system where so much is measured by dollars saved, a trusting friendship with your physician who’s helped you manage a long-term, chronic illness for decades is nothing short of priceless.   

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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.

Sleepless in Massachusetts

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My grandmother used to say that her mother used to say she was lucky if she slept every other night. Sometimes I wonder if I’ve inherited her genes.

8669222331_3133314c7eOf course, I know there are good sleep habits and bad ones, and lately I’ve been slipping into the bad column—going to bed too late, working on my iMac’s large screen until 10:00 or 11:00 at night so I’m exposing myself to too much light before I should be getting ready for bed (this is actually a huge factor), trying to do too much in the evening so my brain can’t unwind.

Recently I’ve been turning to Turner Classic Movies to relax as I finally get ready for bed, because they’ve been showing a lot of wonderful Oscar-winning films, and there are no blasting commercial interruptions. But then, it’s really hard to stop watching Jack Nicholson in One Flew Over the Cuckoo’s Nest. Or Robert Redford and Dustin Hoffman in All the President’s Men.

So Sunday night, after Chicago ended and I was finishing up bandaging my fingers for the night, I was amused to watch an old black-and-white short film featuring the droll essayist Robert Benchley talking about—what else?—insomnia.

Understand that my sister and I used to take turns when we were young reading Benchley’s essays to each other (and James Thurber, too). Benchley was also born in my home town of Worcester. So I was obliged to watch (at 12:15 a.m.).

The film, How to Sleep, released by MGM in 1935, features Benchley explaining all the ways we do everything but go to sleep—transitioning from a mug of warm milk to a feast of leftovers; getting up for that glass of water to quench our thirst, and another, and another; swatting at mosquitos; and fixing the flapping blinds only to trip on the way back to bed. He failed to mention all the journeys to the bathroom, but then again, it was 1935 and such things weren’t discussed in polite company.

Benchley also demonstrates all the contortions that the sleeper goes through during the night—parodying a study by the Mellon Institute about sleep patterns that was commissioned by the Simmons Mattress Company. This, apparently, was the inspiration for the film, which won an Academy Award and is Benchley’s most famous short feature. Simmons Mattress, however, was not amused.

I shut off the TV and went to bed, feeling lighthearted. But, of course, all it takes is a comedy shtick on insomnia to make me more self-conscious of how I wasn’t falling asleep. I tossed. I turned. I couldn’t shut off my brain. Al was snoring. I shoved him. He stopped and then snored some more.

Finally, around 2:00 a.m., as snow plows once again rumbled down our street, I went downstairs to read. I picked up an art book and was transported to 17th century Spain. A different part of my brain, the visual rather than word-intensive side, took over. By the time I went back to bed, I had finally enabled my busy mind to unclench, and I went to sleep.

Five hours isn’t really enough for a very full day, but I made it. And the one good thing about a bad night’s sleep—odds are much better that I’ll sleep soundly the next. As long as TCM isn’t showing another good flick that will keep me up way past my bedtime.

Photo Credit: DG Jones via Compfight cc

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.

A Little Night Music

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It’s really cold here, nine degrees on Monday night. Our street is a sheet of ice following a relatively warm day on Sunday—above freezing, WOW—when the snow that fell overnight melted and then refroze as temperatures dropped.

photoBut Saturday night, despite more snow, Al and I made it to a concert of Latin chamber music at Clark University performed by the Worcester Chamber Music Society, featuring Argentine guest soloist JP Jofre, a world class artist on the bandoneón, a type of concertina.

There is no better antidote to yet more snow than hearing the tango on the bandoneón.

When we got home, I decided to take a walk around the block. It was snowing gently, and the temperatures were just below freezing, so it felt relatively mild, even for me. The fresh snow coated all the dirty drifts that have narrowed our roads to nearly one way and freshened the landscape, transforming tree boughs to white lace.

I had the street all to myself. It was quiet and peaceful. Ginger would have loved it.

This winter will eventually come to an end. A week from Sunday, March 8, we switch to Daylight Savings Time and it will be lighter in the evening. The snow will melt (maybe by June).

So, to nudge things along and give you a little break from your own winter doldrums, here’s a video of Jofre performing Ástor Piazzolla’s Escualo with the JP Jofre Hard Tango Chamber Band at NYC’s Le Poisson Rouge in September, 2012. Tango, anyone?

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.

Enter Juno

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Just when I thought the Farmer’s Almanac was going to be right, after all, predicting less than normal snowfall this year, along comes Winter Storm Juno. As I write on Monday night, we are about to get clobbered by what all the hyped-up TV meteorologists are predicting may be a historic blizzard for the Northeast—rivaling the Blizzard of ‘78.

noreaster-goes-12615The wind-up to this storm has been more nerve-wracking than the actual snow, at least so far. Driving around today, I listened to the new Governor of Massachusetts give his first Big Storm news conference, and all the state officials who reassured us, over and over, that everyone knows what they’re doing and are well-prepared to handle Juno.

N-Star is bringing in electrical crews from as far away as Tennessee to deal with power outages. I received an email from our tree service that customers will get first preference dealing with any downed trees. We managed to get an oil delivery this afternoon before the storm hit, which I insisted on trying to schedule this morning, because it will be incredibly hard to reach the oil spigot under a few feet of snow in frigid temperatures the rest of this week. Around 10:30 this evening, we received a phone message from our city about the state of emergency and travel ban beginning at midnight.

All of this is certainly good. I appreciate having foreknowledge about when the storm will start (it’s been snowing since late afternoon), how long it will last (through Wednesday morning) and how much snow we can expect (anywhere from 18 to 30 inches, according to various reports). At least we can plan a little. Good friends up the street with a generator have offered us a place to stay if the power goes out, a great comfort.

But the reality is, there is no way to know exactly what the storm will bring and how to deal with it until we’re in the heart of it. Which got me to thinking of the parallels between really bad weather and really bad diseases. Too much information about what might happen can only make you incredibly anxious. There’s no way to know how you’ll respond until you’re in the thick of things. And there’s a limit to how much you really want to know about all the scary alternatives, because it doesn’t help you to deal with what actually happens, anyway.

So, I’m trying to keep this in mind as I ride out Juno. I felt a lot better this evening once I knew that both of my very capable adult daughters were safe and sound in their respective homes, at either end of the state, and I heard Al walk in the door. Then I found out he has to go to work Tuesday, as the only social worker covering his hospital, since his colleagues live farther away. But he doesn’t have to rush in the morning, and he may just get there by snowshoe, a much better alternative to driving if the roads get really bad.

Ginger has the best attitude of all of us. She may be 16-and-a-half, but she still loves snow. She must have gone outside at least a half-dozen times this evening, each time returning with more snow on her coat. As far as she’s concerned, it’s just another cold, refreshing night outside. 

According to Roman mythology, Juno was the chief goddess, female counterpart of Jupiter and mother of Mars. She was a goddess of childbirth and worshipped as the guardian angel of women.

If this storm is anything like its namesake, maybe all the warning and hype will be a blessing in disguise, keeping us well-prepared and safe from worse fates. As long as the power stays on, we have heat and Al makes it back and forth to work safely, I will try to sit back, get some writing done and appreciate the wilder side of Mother Nature.

And if things don’t work out so well, I’ll deal with that, too. As I keep reminding myself, I’ve had plenty of practice.

Image Credit: Satellite view of developing Nor’easter off North Carolina’s Outer Banks, January 26, 2015, NASA/NOAA GOES Project.

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.