• Mind
  • Body
  • Sight
  • Hearing
  • Smell
  • Taste
  • Touch
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

  • Home
  • About
    • Privacy Policy
  • What Is Scleroderma?
  • Resources
  • Show Search
Hide Search

managing chronic disease

Dispatch from Medicare Part D

Evelyn Herwitz · October 2, 2019 · 2 Comments

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

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind Tagged With: managing chronic disease, managing medications, Medicare Part D, resilience

Summer’s End

Evelyn Herwitz · September 24, 2019 · 2 Comments

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Smell Tagged With: body-mind balance, exercise, managing chronic disease, mindfulness, resilience

Women Are Different from Men

Evelyn Herwitz · August 13, 2019 · Leave a Comment

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

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: gender disparities in health care, managing chronic disease, resilience

A Sliver of Moon

Evelyn Herwitz · August 6, 2019 · 2 Comments

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

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight Tagged With: managing chronic disease, mindfulness, resilience

Implanted

Evelyn Herwitz · July 30, 2019 · Leave a Comment

Three-and-a-half months have passed since my latest resorbed molar was extracted, and Monday was the big day for the next step: drilling a hole in my healed jaw and screwing in the implant. When I had my checkup with my periodontist two weeks ago and he proclaimed me ready, his receptionist joked, “Want to come back this afternoon?” Most certainly, not.

I did my best not to dwell on the pending procedure. On Sunday, we got to the beach once again, this time on Boston’s North Shore, for a beautiful afternoon of perfect sunshine, light sea breeze, and warm enough water for me to wade up to my waist several times. Just the right distraction.

I busied myself with writing Monday morning, but as the hour grew near to go, I briefly imagined just staying home and not being my normal Do Bee self. The Do Bee won out. On the 45-minute drive to my periodontist, at least the WGBH radio hosts were talking about something amusing: what listeners watch on TV to ease the stress of the daily news cycle. (Marie Kondo was a favorite.)

Then came waiting for the procedure to start. When I’m anticipating dental work, I really have to force myself to stay in the moment and not get overwhelmed. Sitting in the reclining dental chair, covered by paper drapes, I studied the art on the wall (an interesting abstract painting, not your typical bland office art), the plastic wrapping around the overhead exam light’s handles (why does it need extra covering when they’re wearing gloves, anyway?), and contemplated how much plastic waste that medical providers generate in the interest of sterility. (Literally, tons. According the Journal of the American Medical Association, health care facilities are the second largest generators of waste in the U.S., producing 4 billion tons annually. That’s a lot of disposables, including a lot of plastic.)

Fortunately, my periodontist and I enjoy similar music during these procedures, which are strenuous for both of us. As he injected local anesthetic into my gums, I focused on Vivaldi. This was especially helpful as he prepared my jaw for the implant, which involved a lot of scraping and pressure and pulling my tight mouth into very uncomfortable distortions. The selection was Vivaldi’s Violin Concerto in A Minor, which I played years ago in high school, and I could still remember some of the bowing.

Then came the drilling. This drowned out all the music, causing my entire skull to vibrate. The hardest part was getting the drill and suction and other tools into my mouth. But he managed, thank goodness, and the worst was over in about twenty (long) minutes. Screwing in the implant took some manipulation, but at least I could rest my mouth in-between the different steps. As he’d predicted, we were finished in under an hour. Definitely easier than the extraction, which took twice as long. He was pleased with the result, and I finally relaxed.

After a 45-minute drive, plus waiting at the pharmacy for antibiotics (always a necessary precaution for me), it was a relief to get home. Another three months of healing and trying not to chew on the right side of my jaw, and then it will be time for my dentist to put in the crown. Much as I dread this procedure, I’m glad I took care of it sooner than later. Being a Do Bee—on my own behalf— paid off. (And for those of you who remember Romper Room, here’s the official Do Bee song.)

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: Jenna Lee

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Taste, Touch Tagged With: dental implants, managing chronic disease, mindfulness, resilience

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 39
  • Page 40
  • Page 41
  • Page 42
  • Page 43
  • Interim pages omitted …
  • Page 90
  • Go to Next Page »

Primary Sidebar

Subscribe via Email

Enter your email address to subscribe to Living With Scleroderma and receive new posts by email. Subscriptions are free and I never share your address.

About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

Blog Archive

Recent Posts

  • What Happened to Your Hands?
  • Drips and Drops
  • Out of Focus
  • Bandage Break
  • Threading the Needle

I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

Copyright © 2025 · Daily Dish Pro on Genesis Framework · WordPress · Log in