Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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

Moonstruck

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I’ve had an Apple watch for a while, now. I made the investment originally because it includes an ECG app, which has come in quite handy numerous times over the past year-plus, as I’ve been trying to understand my arrhythmia and related issues that finally led to a diagnosis of Type II stress-induced pulmonary hypertension. It helps to rule out atrial fibrillation and provides useful data for my cardiologist.

My watch is useful, too, for tracking exercise, and keeping me aware of when I’m getting too sedentary. As I exercise, I can monitor my heart rate, which is important feedback for me as well as for both my cardiologist and pulmonologist, who have given me some guidelines for my ideal range.

All of this is good and valuable for my health. But here’s the fun part: the watch face. You can choose from a variety of styles, and my latest favorite tracks the phases of the moon throughout the month. I’ve paired this with the Hebrew calendar, which is tied to the lunar cycle, and am now more aware of why Jewish holidays arrive when they do.

The neatest part (I really do geek out on this stuff) is that the moon image on the watch changes phases with each day. As I write on Monday afternoon, it is four days before the full moon, and so the moon on my watch is waxing, with just a sliver of dark along the left edge. So, of course, now I’m comparing it to the moon in the night sky. The image on my wrist is remarkably accurate.

I’ve always found the moon to be a comfort. On a clear December night, it gleams like a diamond on black velvet. Illumined by the hidden sun, it still seems to glow from within, radiating calm. However far I travel from home, it’s right there, guarding the night. Even as it reveals itself and recedes from view over a month’s course, it is ever present, repeating its game of hide and seek over and over, throughout millennia.

So, now I carry the moon on my wrist, a reminder of the constancy of change, my own little oasis of calm in the night.

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: Mason Kimbarovsky

Namaste

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Staying in shape during the pandemic has been, shall we say, a challenge.

The nearby college gym, where I walked an indoor track and rode a stationary bike, shut down to non-students for months in 2020. Even when it reopened for members like me the following year, I didn’t want to risk Covid exposure. Same story for the studio where I took Pilates classes.

I tried some online classes, but that didn’t work. So, I fell back on my favorite form of free exercise, walking my half-hour route around our neighborhood. But, of course, cold weather and rain and ice presented plenty of excuses to cocoon inside.

Other than my daily morning and evening stretches, which have spared me from becoming totally inflexible, I have definitely lost muscle tone and strength. I’ve been somewhat better about taking my walks in good weather, but now that we’re entering winter here in New England, I’m having a harder time pushing myself out the door before it gets dark.

Given my recent diagnosis of Type II stress-induced pulmonary hypertension, however, something had to change. And so, after procrastinating and feeling more creaky as a result, I finally decided to sign up for an easy yoga class to build strength, flexibility, and stress-management skills.

The studio is 15 minutes from home in a lovely, historic carriage house near downtown. As soon as I walked into the space, with its soft lighting and lavender scent, I felt calmer. I introduced myself to the instructor and explained my limitations (can’t flex my wrists, limited range of motion, balance issues, stiff ankles and toes). She was welcoming and immediately helpful, setting me up with a thick yoga mat, knee pad, blanket, and blocks for support, and gave suggestions for how to modify some of the poses. Then, to my surprise, a friend showed up, so I had a buddy.

The hour passed quickly, and the pace was slow enough for my skill level. I’m pretty good at figuring out how to modify poses, although my muscles were definitely trembling with some of the balancing and downward-facing positions. But I made it through. And the most amazing thing—my back felt great afterward, a major bonus.

I returned last week with my younger daughter, who was visiting for the holiday weekend. She has more yoga experience than I do, and she really enjoyed the class, validating my assessment that the instructor is excellent and it’s the right level for me. And, it was great to be able to go together.

So, I’m going to do my best to continue. It feels good to be back in a studio setting with an expert instructor who really cares to help me succeed. It’s also great to realize that I’m not as out of shape as I thought. And finding a much-needed weekly oasis of calm? All the better.

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: Zoltan Tasi

What I’m Thankful for this Thanksgiving

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For the first time in three years, we’re planning to get together with Al’s cousins for Thanksgiving. While we can never, ever, dismiss Covid as a wily adversary, it does feel as if the pandemic is finally morphing into an endemic, and that we’ll cope with it like the annual flu, with updated vaccines each year.

Now that Al and I are fully vaxxed for Covid and the flu, we’ve been getting out more. This past weekend we attended a wonderful concert of piano and cello compositions by J.S. Bach. We’re no longer worried about eating inside restaurants. I always carry a mask, but have stopped using it unless I’m on mass transit or am in a crowded, enclosed space. Of course, however, I follow rules for masking in health care settings.

So far, so good, thank goodness. I also feel like I need to risk exposure to whatever else is floating about, just so my body produces antibodies on its own. (Though I am not looking for trouble, either. If someone is sneezing or coughing nearby, out comes the mask.)

It is a relief. I am incredibly grateful for all the effective vaccines and anti-viral medications, for free access to same, for health care professionals who have worked so hard under such heavy pressure during the worst of the pandemic, for all those who showed up and solved problems and kept things running.

There is more to be grateful for this holiday. Our election system worked this November, despite so many threats and strains. Our democracy remains under tremendous pressure, and the risks of irreparable harm remain huge. But I am more hopeful than I have been this past year that people of good will, and especially young folks, will rise to the challenges before us.

On a more personal note, I’m grateful for my husband, the happiest man on Earth since he retired a few weeks ago, my two amazing daughters, loving family and good friends, a warm home in this chilly season, excellent physicians, a caring community, and you, Dear Reader, for joining me on my journey with scleroderma and all its twists and turns.

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.

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