Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

In a Word

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Nearly 40 years ago, when I first experienced symptoms of what I later learned was scleroderma, I found myself exhausted. There were plenty of logical explanations. I was in entrepreneurial mode, trying to launch a statewide news service for four NPR affiliates, and running myself ragged. I wasn’t sleeping well. My first marriage had just broken up, and I was struggling with a deep sense of failure. My gut was reacting to all the stress, and I was losing weight.

Fortunately, I had found a strong community in a local synagogue, and the mother of one of my friends offered to take me in and help me get back on my feet. She was a blunt woman, but she was also kind and a good cook, and after a week in her home, I began to regain my strength. And she told me this: It doesn’t take long to wear yourself down, but it takes a long time to build yourself back up again.

I have thought of those wise words many times since.

Of all the things I’m grateful for this Thanksgiving, I’m particularly grateful that in America we can express ourselves freely. But that freedom comes with profound responsibility. Words are powerful. What we say to each other and how we say it matters. It has become alarmingly clear that words can all too easily destroy what is best about our country, and it will take a long time to restore what we’ve already lost.

I hope the conversation around your dinner table is replete with all the respect and empathy so absent in our national dialogue. Each of us needs to be heard, but each needs to listen, really listen, too. That’s where true healing begins. Happy Thanksgiving.

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: Scott Webb

The Eagle Has Landed

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Last Friday, as I was walking toward the Back Bay train station in Boston on a sunny afternoon, I came upon a crowd of people chatting and taking pictures with their cell phones. There on the sidewalk was a beautiful, huge, black-and-white-mottled bird—big as a wild turkey, but not—with a rectangular head, stern golden eyes, and a yellow beak with a pointed, curved tip. Wildlife in the city!

But as I reached into my coat pocket for my own phone, I noticed something odd about the scene—gray and white feathers, enough to fill a pillow, scattered everywhere. And then something else—a bloody carcass that the bird was in the process of shredding and eating. “It’s rather gruesome,” one of the paparazzi commented, “but my son will be fascinated.”

Yes, indeed. Gruesome and mesmerizing. As I later determined from my bird field guide, the predator was an immature bald eagle feasting on a pigeon in Copley Square.

And no, I did not take a picture. I felt really bad for the pigeon.

Now, for those of you who have no sympathy for pigeons and consider them flying rats or worse, hear me out. I’ve done a lot of reading about pigeons in the past few years, as they figure prominently in the World War I novel that I’ve been writing (now in third draft revisions). They are truly remarkable creatures.

For one thing, pigeons are loyal. They mate for life and live as a couple. (So do bald eagles, apparently, as well as puffins, another of my favorites.)

They come in an astounding array of colors. Even common gray pigeons have stunning iridescent, jewel-toned feathers. Just take a closer look next time you see one in the sun.

They have an extraordinary ability to find their way home, somehow sensing the Earth’s magnetic fields. That’s why pigeons have been deployed since ancient Rome to carry messages.

Which brings me to the fact that the humble pigeon has saved lives. One of the most famous was Cher Ami (Dear Friend), who delivered a vital message that led to the rescue of more than 500 American soldiers during World War I. (And no, he’s not the pigeon in my novel, but certainly an inspiration). This little pigeon survived a bullet to fly 25 miles in a half-hour and deliver his life-saving message. He was awarded the Croix de Guerre by the French for bravery. His stuffed body still resides in the Smithsonian.

The predator eagle was certainly just doing what wildlife do on that Boston sidewalk, eating its prey. And we are all certainly drawn to the unusual, unexpected spectacle, and the exercise of raw power—these days, more than ever, it seems. All too easy to ignore or discount the subtle, the nuanced, the peaceful.

As I reached the train station, I was heartened to see a score of pigeons hanging out in the sunshine by the entrance. An everyday city sight, but so calming, no crowds. Nearby, a young man kneeled with his cellphone, taking their picture.

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.

Images: Top, Patrick Brinksma; Bottom, Zac Ong

Stone Walls

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I’m posting a day late, again, because of Jewish holidays, again—this time, the Festival of Sukkot, which began on a Monday and Tuesday this year. Al always builds our sukkah on our back deck. It’s a three-sided booth with pine boughs for a roof, where we eat our meals and visit with friends during the holiday. You have to be able to see the stars through the roof at night. Among many concepts, Sukkot is about recognizing the transience of life, our connection to the natural world, and gratitude.

On both afternoons, in sunny fall weather, we took long walks in the woods, savoring the light illuminating brilliant foliage as maples and birches flamed red and orange and gold. As we walked trails, leaves floated down like so many graceful hang gliders, en route to the forest floor.

The air smelled moist and rich. I picked my way carefully over gnarled tree roots and rocks, along pine-needle-carpeted trails that wound around old stone walls. Ever a feature of New England forests, these tumbled grids mark long abandoned pastures, hard to imagine now in such a well-established woods. But they got me to thinking about walls, so intensely referenced these days.

Which led me to reread Robert Frost’s Mending Wall, a poem with timeless resonance. A few verses (you can read the full poem here):

Something there is that doesn’t love a wall,
That sends the frozen-ground-swell under it,
And spills the upper boulders in the sun;
And makes gaps even two can pass abreast. . . .

I let my neighbor know beyond the hill;
And on a day we meet to walk the line
And set the wall between us once again.
We keep the wall between us as we go. . . .

One on a side. It comes to little more:
There where it is we do not need the wall:
He is all pine and I am apple orchard.
My apple trees will never get across
And eat the cones under his pines, I tell him.
He only says, ‘Good fences make good neighbors.’ . . .

Before I built a wall I’d ask to know
What I was walling in or walling out,
And to whom I was like to give offense.
Something there is that doesn’t love a wall,
That wants it down. I could say ‘Elves’ to him,
But it’s not elves exactly, and I’d rather
He said it for himself. . . . .

The stone walls we passed in the woods, what was left of them, were dark as the surrounding trees, speckled with golden leaves. No one has mended them for at least a century, maybe more. And no one has minded. What once was essential matters no more. Unseen, leaves drift to the forest floor.

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.

Dispatch from Medicare Part D

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I’m posting on Wednesday, a day late (hopefully, not a dollar short), because Monday and Tuesday were Rosh Hashanah, and in the run-up to the Jewish New Year and a lot of cooking for company, I ran out of time to write a post for my normal Tuesday morning blog schedule. In the midst of all that, however, I was also in the midst of a struggle with my Medicare Part D insurance company about a medication I’ve been on for decades. Fortunately, it has a happy ending, but it’s also a case study in the need to be your own health care advocate . . .

For decades, I’ve been taking Evoxac (generic name is Cevimeline) to help me compensate for dry mouth due to Sjogren’s Syndrome, a not-uncommon autoimmune companion to scleroderma. This has always been routinely covered by any employer-based health insurance plan, usually for about a $10 co-pay for 90 pills. Under our previous coverage, I’d received bulk orders, but my supply and refills had finally run out. When I saw my rheumatologist at Boston Medical a couple of Fridays ago, I asked him to call in a prescription to the Walgreens I now use under my new Medicare Part D plan.

Within an hour, I received a text that the pharmacy was out of stock for that med, but would order a supply for me. Fine. I still had enough pills for several days. By Tuesday, however, I’d not received any word about the prescription’s status, so I called Walgreens. Lo and behold, the problem wasn’t just a matter of inventory; my Cigna plan had turned down the request because Cevimeline is not in their formulary. If I wanted to fill it without coverage, the price tag was over $500.

What??? First of all, why hadn’t I received a text about the rejected coverage? And more importantly, when I surveyed Part D plans last spring, I had reviewed all my meds, and this one was definitely on the list of covered drugs. I know formularies can be changed without notice, one of the more outrageous issues with our health care system, but it had never happened to me before. My next step was to research Cevimeline via Canada, at a more affordable price. Not available, to my dismay.

So I called Cigna. Now, I must admit, the customer service people were polite and very helpful. Not what I expected. I was forwarded to their coverage unit and learned I needed to apply for a coverage appeal. It would take 72 hours, once they received documentation from my rheumatologist that I needed this medication. But, wait, I explained, I now have no pills left. So the service rep put my request on 24 hour turnaround. So far, so good.

Next step: Follow up with my doc’s office to be sure they sent the needed info ASAP. Forget messaging through MyChart. That would take too long. So I called. But here’s where new systems of consolidated call centers at health care providers comes into play. Although I was able to confirm that Cigna had faxed their info request, I could not get through to my doctor or the nurse I know who handles refills and pre-authorization requests. I simply could not get past the gatekeeper customer service rep at Boston Medical. He was pleasant enough, but had no power to do anything other than try to reach the nurse and, when she didn’t answer, leave a message and put a note in my electronic file that I was out of pills.

This was not going to suffice. No point arguing with him. Instead, as soon as I hung up, I emailed my rheumatologist directly (I’ve had his email for years) and the nurse (who has always helped me in the past), explained the situation, and waited for a response. By late that afternoon, the nurse responded that she’d called Cigna and my case was “in process.” Great, I thought.

But no word from Walgreens by the next day. So I called Cigna again Wednesday morning. Sure enough, case “in process” meant they had just sent the info request, but not heard back from Boston Medical. So I emailed the nurse again with what I’d learned. She got on the phone within hours and sent them what they needed. Thursday morning, first thing, I received a call from Cigna that the prescription had been approved.

Now the question remained: how much would this cost? The other part of my dilemma with Part D now is that I have landed in the infamous “donut hole,” which essentially means I’ve exhausted my insurance’s more generous contribution to my meds and now must pay about 25 percent of the cost, which is a lot with most of my meds, until I pay something like $5,000 out-of-pocket. Turns out the high price I was quoted by Walgreens was for a three-month supply. With the approval, the cost was significantly reduced, but there was a confusing price range.

So on Friday, I went to Walgreens, to be sure that the prescription would go through, and to find out the cost. It did go through, thank goodness. First cost I was quoted: about $150. Was this for one or three months? Three months. Okay, so how much for one month? Just under $30. Hmmm. There’s a big math error somewhere, but the under $30 price suited me fine. Again, they were out of stock. As of Monday afternoon, I got a text that my prescription was filled and ready for pick-up. And that’s just what I’m going to do after I finish this post.

Moral of the story: Never let an outrageous drug price quote stop you from advocating for what you need. And be sure to get private emails from your trusted health care providers. (As a side note, after I ran into a similar call center roadblock with reaching my cardiologist a few months ago, I told him about it at my last appointment, and he gave me his personal secretary’s contact info.) Persistence pays.

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: Mathew Schwartz

Summer’s End

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Here in New England, it’s officially fall. Time, alas, to let go of my favorite season. But we’ve been blessed with summer weather these past few days, a parting gift. Al and I took advantage of the 80s temps and sunny skies to enjoy a long afternoon hike on the Central Massachusetts Rail Trail.

It was a fitting way to savor the season’s end—as well as a meaningful way to appreciate the beauty in our own backyard, especially on a weekend marked by worldwide demonstrations to protest inaction on climate change and the deeply disquieting news that a third of North America’s birds have vanished since 1970, due to loss of habitat, declining insect populations, pesticides, and predators (read, cats).

The Rail Trail includes the ruins of a former woolen factory, its tumbled stone foundations enveloped by encroaching forest. A rusted turbine sits in a sun dappled clearing like an abandoned sculpture. The remaining wall of a dam presides over goldenrod. Nature has its ways, both subtle and severe, of reminding us that it will always have the last word. It’s long past time that we start listening, hard.

Please walk with me . . .

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.