Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Candy Heart Wish

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It’s Valentine’s Day, and we could all use a bit more love in this world. While I can’t send you a box of chocolates or a rose bouquet, Dear Reader, if I had my own little candy conversation hearts to share, here is the one message I’d print on them:

BE WELL

Easier said than done, certainly. But it’s a phrase that I’ve been thinking about a lot, especially since the pandemic. I use it to sign most of my email correspondence these days, business and personal.

Being well is more than just a physical state. We don’t necessarily have control over what our bodies do, especially with a disease as complicated as scleroderma and all its associated ailments. Assuming access to good medical care, however (and that’s a big assumption, given health care consolidation and the health insurance mess in the U.S.), it is possible to get treatments and medical support to ease the disease process. It requires recognizing and understanding your personal situation, learning what help is available and whom to trust, being a strong self-advocate, and following through on treatments and protocols.

There is a lot to learn about scleroderma, and a lot to process. My resources page links to leaders in scleroderma research and education, to help you. But the self-advocacy piece is, for me, the most important aspect of dealing with this disease for the past 40 years. I’ve learned to push my doctors for information and explanations, and to share my fears, as well. I’ve also learned to challenge treatment recommendations that don’t make sense, and how to find research that I’ve shared with my medical team to move in a more logical direction. And I make sure that I get all my questions answered in every appointment, regardless of how long it takes. I’m grateful that my medical team respects me for it, as much as I respect them.

In this sense, to BE WELL means that you are not your diagnosis. You are a complex individual with a complicated disease that requires you to stand up for yourself and what you need to remain as healthy, active, and involved in life as you are able. Wellness is as much a state of mind as a physical state. If there is one message that I hope this blog conveys to anyone with scleroderma, newly diagnosed or a veteran like me, it’s about living, not the diagnostic label.

So, happy Valentine’s Day to all. Be well.

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: Laura Briedis

Soup’s On!

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This past weekend here in New England was bitter cold. As in negative teens, even before the windchill factor. Not my kind of weather, not by a long shot. Fortunately, it passed quickly. But winter, regardless of an unwelcome Arctic vortex, is time for soup in our home. So, Dear Reader, here are two wonderful soup recipes I recently discovered from New York Times Cooking, as well as a delicious bean stew:

Golden Leek and Potato Soup by Melissa Clark
The best recipe with leeks and potatoes that I have ever found. I left out the heavy cream, because I don’t do lactose, but it’s fine and rich without.

Roasted Carrot, Parsnip and Potato Soup by Martha Rose Shulman
Recipe calls for a blender, but I just pureed it in my old Cuisinart, and it worked fine. Easy to make.

Rosemary White Beans with Frizzled Onions and Tomato by Melissa Clark
I never knew that onions sauteed until they caramelize are “frizzled,” but whatever you call them, they are yummy! This is also an easy recipe and just so, so good, especially on a cold winter day.

Bon appetite, and if you have links to favorite soup recipes (especially vegetarian) to share, please do!

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:  Dexter McQueen

Dry Spell

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Dealing with dry eyes in a Northeast winter is always a challenge. Even as ours has been milder, so far (knock on wood—or not, given that the planet is warming) there’s just no escape from dry heat indoors, regardless of source. Some solve this with a humidifier, but I’ve found them difficult to keep mold-free.

My solution for my Sjogren’s for the past year-and-half, in additions to Restasis® eye drops, has been scleral contact lenses. I’m very fortunate to live a ten-minute drive from a college that specializes in health sciences, including optometry, with an excellent dry eye clinic. Dr. S, who teaches the optometry students, is a fountain of creative solutions for my eye problems and has been my guide and cheerleader as I’ve learned how to wear the lenses.

So, when I showed up for my annual check-up last week, he and the third-year student who attended me were concerned that I’m once again struggling with my dry eyes, despite the scleral contacts. The issue this time is not allergies, as it was last spring, easily solved with antihistamine eye drops. Even with the lenses inserted, the part of my eye not covered by the lenses dries out too quickly, due to the dry air at home. I need to use saline drops frequently to keep them moistened, so I’ve taken to only wearing them a couple of times a week, when I am sure I can use the drops often. But when I go for a couple of days without wearing them, my eyes get gunked up and my vision, bleary. Not fun.

Dr. S listened carefully, and then came up with another brainstorm. He had samples of a new nasal spray that is designed to treat dry eyes, called Tyrvaya®. You read that right. A nasal spray for dry eyes. There’s a trick to spraying it—you have to aim it inside your nostril toward your ear. And definitely don’t inhale, because it really stings. But miraculously, after trying this for several days, I find that my eyes are producing more tears—enough, in fact, that I can go much longer wearing my contacts without the saline drops.

Fun fact, as part of this education: Even for those without dry eyes, we all blink less when staring at a computer screen. For me, this lack of blinking becomes a big issue, exacerbating my dryness. Dr. S had another ingenious solution: an app that reminds you to blink. So I’ve added the Blinks app to my iMac. Basically, it’s an image of an eye that pops up according to the schedule you set, and blinks, then disappears. I’ve just started experimenting with it, so I cannot yet assess, but I pass that along as an option.

I don’t yet know what Tyrvaya costs once the samples run out, and I’m betting it will involved more mishegas with insurance coverage. But so far, it seems well worth trying. Will keep you posted at a later date about my progress, Dear Reader. In the meantime, remember to blink!

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:  Petri Heiskanen

Inner Workings

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An article in Monday’s Washington Post caught my eye: “Earth’s inner core seems to be slowing its spin.” This gave me pause. So, I wondered, does this mean that eventually our planet will stop spinning and we’ll all be flung into outer space in the absence of gravity? Fortunately, a sentence below the headline reassured, “This isn’t the beginning of the end times.” Good to know.

The reporter went on to explain what exactly constitutes the Earth’s inner core (“a superheated ball of iron slightly smaller than the moon”) and various ways that deep-earth scientists measure its spin, and the debate over whether the inner core is actually slowing, or slows and speeds up in cycles, and related implications. One of the most interesting takeaways—all this internal movement that I never knew about plays a key role in establishing the Earth’s magnetic field, which protects us from cosmic radiation. It also influences the length of each day. Which, it turns out, has been increasing by milliseconds for centuries.

How this unseen, spinning molten mass affects life on Earth remains one of the mysteries of our universe. Somehow, this strikes me as totally appropriate. So much of what matters in life is hidden beneath the surface. How well do we really know others, let alone those whom we’re closest to, let alone ourselves?

And so, on this snowy afternoon, as I watch huge flakes drifting by my window, bending evergreen branches in our backyard beneath a plump coat of white, I’m grateful for that mysterious ball of molten iron, whirling well beneath us, ensuring that we won’t be destroyed by cosmic rays. So much seems uncertain in this world, I’ll take it on faith. And a millisecond longer day, too.

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: Javier Miranda

Snake Eyes

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This is not a novel observation, but getting prescriptions filled for a reasonable cost in the U.S. is a crap shoot.

I just spent an hour on the phone with my Medicare Part D insurance company, trying to get prior authorization for a medication I need to refill every other month, but which is not covered by my plan. This, after first calling my pharmacy to find out why they kept sending me messages about an “insurance issue” with the prescription and then being told that they had not yet submitted the scrip and would only know details when it was filled. Now, none of that made sense, because in my app for the pharmacy, I could see the price—nearly $700.

But I need to back up. Because I have for the past several years very successfully been able to fill this scrip and one other very expensive medication via a Canadian online pharmacy in British Columbia. Great service, much more reasonable pricing. That is, however, until last month, when I received a letter from the FDA informing me that my other very expensive medication refill had been impounded at the Port of Los Angeles after being flagged by U.S. Customs.

The reason? Since this medication was available in the U.S., but it was coming from Canada, its authenticity could not be confirmed. To “protect” me from consumer fraud, the FDA was going to destroy it. I wrote to the official who sent the letter, trying to get an exemption, but no luck. And this particular medication would cost in the four figures if filled by my approved local pharmacy.

What to do? Thankfully, my team at Boston Medical suggested an alternative: Marc Cuban Cost Plus Drugs. This is a legitimate, licensed drug wholesaler that fills prescriptions at cost plus a 15 percent markup. And fortunately, they carry my very expensive medication. Here’s the kicker: the price from Canada was $200 for a refill; with Marc Cuban, $10! It arrived within a week and it works just fine, thank you very much.

Unfortunately, they do not as yet carry my other expensive medication, the one for which I await prior authorization. Even with insurance, I’m expected it to be pricey. Maybe there is an alternative, to be discussed with my medical provider, given that we have to wait until 2025 for the new $2,000 cap on Medicare drug out-of-pocket expenses to go into effect. Which assumes that this important provision of the new Inflation Reduction Act doesn’t get killed before then, given all the craziness in Washington.

The system is just so convoluted. And clearly, from the wholesale price for my very expensive medication, Big Pharma is just making a killing. (No news there.) Plus, who really has time or patience to dig for all the information needed to pursue prior authorization? I’m fortunate that I can take care of this for myself, that I own my own schedule at this point in my life, and we can afford the medications we need. Not so for too many others.

And so, after the hour on the phone with the prior authorization department at my Part D insurer, writing an email to my provider to let her know about the form they faxxed, and getting a voice mail from my Part D insurance telling my original request to fill the scrip was turned down (yes, I figured that out already), it’s a waiting game. Fingers crossed . . .

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: David Clode