Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

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

Open Wide

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It’s not easy to open my mouth all the way. Even as the stiffening of the skin on my face has eased significantly over the past 40 years (indeed, I have plenty of wrinkles to prove it), I cannot open wide at visits to the dentist or the doctor. My dentist and hygienist and periodontist are all well-versed in managing the complications of working on my teeth. Still, those visits are never easy.

But there’s another aspect to this issue that’s less obvious. And that involves food. In particular, food in restaurants. Most particularly, any kind of fancy sandwich.

Portions are so overdone in most eateries that a panini or vegiburger can be three inches thick or more. And I simply cannot open wide enough to eat it without making a huge mess. (Holding it in my hands is another matter—as in trying not to get sauce or condiments on my bandages, which can infect my ulcers.)

My compromise, on those occasions when I’m hungering for something hearty in sandwich form, is to eat it with a knife and fork. Which works, for the most part, but it’s not the same as tasting all the ingredients together. And manipulating those utensils through thick breads with my hands is no picnic, either.

One trick I’ve learned: It’s easier to eat a sandwich cut on the diagonal than as two rectangles. That way, I can take smaller bites to start and work my way to the center.

But probably the best solution to the restaurant sandwich dilemma: a good, old-fashioned grilled-cheese-and-tomato sandwich. On our trip in December to the Connecticut shore, I had the pleasure of rediscovering this favorite from childhood. Not too thick, not too sloppy (if I wrap it in a napkin as I eat), and so satisfying.

Have any of you with this same scleroderma issue found other good options? Please share!

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: Lefteris kallergis

Lessons from My African Violet

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For the first time ever, I have managed to nurture an African Violet rather than kill it by drowning its roots or total neglect. In fact, a plant that was given to us last Passover has flourished to the point of blooming, just in time for New Year’s. This is nothing short of a miracle. I guess that tending my bonsai has taught me a thing or two about what my plants actually need.

To wit, a few lessons from my African Violet:

  • Check your hypotheses before acting. If the leaves are rigid, there’s plenty of moisture, even if the leaves curve downward.
  • Trust in Nature’s wisdom. The way the leaves grow protects the soil and helps the plant retain moisture.
  • Find the balance point between too much and too little. My African Violet prefers dappled sunlight, best achieved when shaded by my bonsai (perhaps they commune, too) and watering only when the soil is nearly dry.
  • Be patient. With good care, it will bloom when you least expect it.
  • Appreciate the simple things in life. There is peace and joy to be found there.

Lessons to live by as we enter 2023. Happy New Year, Dear Reader.

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.

The Year That Was

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When I was in elementary school, my parents loved watching a TV program on NBC called That Was the Week That Was. Biting political satire was TW3’s forté, and nothing was off limits, from abhorent civil rights murders in Mississippi* to Barry Goldwater’s 1964 presidential bid. Adapted from the BBC original, the US program ran from 1964-1965, and introduced host David Frost to American audiences in the second season. Among the regulars were Henry Morgan, Phyllis Newman, Alan Alda, and Nancy Ames. Tom Lehrer wrote some his most famous songs for the program, including Vatican Rag and National Brotherhood Week.

I was so inspired by the show that in the sixth grade, I convinced one of my friends to help me write a version of the TW3  theme song as “That Was the Year That Was” to present to our fellow classmates as an idea for a class play. Needless to say, it went over like a lead balloon, because none of the other kids had any idea what we were singing about. But I have to credit my teacher, who at least let us give it a try. And, fortunately, there was no backlash from parents over our left-leaning politics.

There’s no shortage of political satire on TV and the Internet today, certainly, but TW3 originated the genre, and I wonder what they would have made of 2022. Plenty of material to parody, from botched Covid messaging to outrageous candidates in the Midterms. I just wish today’s TV satirists would rely less on obscenities for laughs and more on the kind of wry, pointed political commentary that TW3 pioneered.

This past year has been laden with so many tragic events—brutal war, needless deaths from the pandemic, too many mass shootings (and by that I mean even one is too many, which we’ve far exceeded), over-the-top partisanship and division, devastating storms driven by climate change—that it sometimes feels hard to find something to laugh about. But we lose our sense of humor at our peril. To quote the ever-quotable Mark Twain, “The human race has only one really effective weapon and that is laughter.”

As we say goodbye to 2022 this weekend and welcome (perhaps with some trepidation after the last few years) what 2023 has in store, here’s hoping that whatever comes, we all find some good reasons to laugh at our very human foibles, make some time to be silly, and face truths worth contemplating at the heart of the joke.

* Some readers may find this YouTube clip offensive. I doubt if it would be allowed on TV today, risking backlash from both ends of the political spectrum. But the musical sketch was intended to shock, for obvious reasons that still sting the American psyche today—as well it should.

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: “Men, possibly broadcasting technicians, seated in front of bank of television sets at the Democratic Headquarters at the Mayflower Hotel, Washington, D.C. on election night, November 3, 1964.” Library of Congress PPOC