Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Mediterranean Musings

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No doubt about it. The weather here in New England is getting colder. My blue fingers bear witness to fall, even as the trees are only just turning.

Sigh. I keep thinking of our wonderful vacation this summer in Greece, and especially our days on Crete. Hot and sunny days, jumping waves in the ocean—and some of the best food I have ever eaten. Well, I can’t fly back to Crete anytime soon, much as I would like, but I can replicate the flavors of that stunning island.

So, for Rosh Hashanah last week, I used a cookbook of Crete cuisine for our holiday meal. Among the dishes were homemade stuffed grape leaves, something I never would have thought of making before. Fortunately, our younger daughter was home for the weekend, and her very nimble fingers came in quite handy for rolling several dozen of the appetizers.

The recipe is actually quite simple. The filling is a combination of rice, lemon juice, olive oil, mint, dill, and onion; you can buy grape leaves by the jar and save the step of prepping them. Lots of recipes out there. The one we followed needed some adjustment in proportions and used uncooked rice (which cooks after the leaves are stuffed), but I’ve seen other recipes that use cooked or partially-cooked rice. Once you make the filling, you wrap a spoonful in each grape leaf, kind of like a mini-burrito. Then they all go in the bottom of a large pot, covered with water and a plate to keep them from floating. Twenty minutes later, they’re done. And delicious, much softer, more subtly flavored than the store-bought kind.

I was actually able to wrap one myself, despite wearing annoying latex gloves (an essential so I don’t infect my fingers while cooking), with floppy fingers that are longer than my partially amputated tips. But I’m going to try it again on my own sometime, because I want to see if I can really do it, and they make a great lunch. I still have a few left from last week, and they keep well in the fridge.

Best of all, when I eat stuffed grape leaves (with kalamata olives, of course, a perennial favorite of mine), I can better remember the blue Mediterranean skies and warm waves, the pleasure of a hot-but-not-too-hot day, our wonderful B&B hosts, and the joy of savoring every moment. That’s the best antidote to fall’s onset that I can think of.

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.

Women Are Different from Men

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Yes, of course, women are different from men. But I’m not referring to obvious, observable gender differences. Nor to sexual identity or gender fluidity. No, I’m talking about how women and men experience disease in very different ways, and the implications for health care.

Let’s start with scleroderma, and systemic sclerosis, in particular. The vast majority of individuals who have this disease are women. Indeed, the vast majority who live with autoimmune diseases of all kinds are women. Why? Recent studies suggest that the male sex hormone, testosterone, helps to protect the body from turning on itself. Women have about one-tenth as much testosterone as men. But that’s still just a strong theory. The fact remains that women account for the preponderance of patients with autoimmune diseases—which often present with ambiguous symptoms that are all too often misdiagnosed or dismissed as being the result of stress, anxiety, or worrying too much.

Women also experience different diseases differently than men. Heart disease is the greatest killer of women, yet the “classic” symptoms of a heart attack—crushing chest pain, radiating pain down the left arm—are atypical for women. More likely, we might feel nauseated, dizzy, upper back or neck pain, light-headed or fatigued, short of breath.

But because protocols for treating heart attacks are based on male symptoms, women experiencing heart failure often go undiagnosed and are sent home. Women also dismiss their own symptoms until it’s too late, or receive treatments that are less successful for women than for men. All of these factors combine to increase the mortality risk for women with cardiovascular disease.

Then there’s the issue of how women experience pain differently from men. We tend to have more intense pain and to verbalize our pain more readily and frequently than men—and be dismissed for complaining too much. With pain as one of the body’s most significant signals that something is awry, the fact that women are not taken as seriously as men has major consequences for appropriate medical care. This is relevant for both diagnosis and treatment of autoimmune disease and heart disease, along with a host of other medical conditions.

How women experience disease differently from men can no longer be ignored, and we need to be educated health care consumers to properly advocate for ourselves. In recent months, I’ve become much more aware of the issue thanks to one of my clients, Terry Hush at Roji Health Intelligence, and a significant series of blogs that she wrote and I edited. You can read the entire collection in this eBook. (And no, I don’t get any kick-back for promoting this work; it’s free, it’s really important, and that’s why I’m sharing the link.)

Here’s to the power of knowing.

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: Ryoji Iwata

A Sliver of Moon

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Saturday night, we were sitting with friends by a fire pit, near a pond, watching the flames, watching a sliver of moon sink beyond the trees. The same moon sinking beyond the horizon, two hours later, in El Paso. The same moon that would be absent from the sky, early Sunday morning, in Dayton.

In the U.S., in 2019, so far, there have been 255 verified mass shootings. Nearly 8,800 people have died from guns. That total just increased by 31 souls.

There’s a lot I can do to increase my odds of living a long life with scleroderma. I’ve managed it for nearly four decades, now. Some of my resilience is genetic. I’m fortunate to have access to quality health care. But I’m also vigilant and diligent about making healthy choices.

None of us can control whether an active shooter with a semiautomatic weapon of war decides to show up at a Walmart, or a bar—or a school, a church, a mosque, a synagogue, a movie theatre, a festival—and spray the crowd with deadly fire. But we can make our voices heard. And we can vote to end this madness.

The Earth turns, unceasing, on its axis. Nothing in life ever remains the same. We cannot control the world around us, only our response.

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: Terry Richmond