Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Fuzzy Thinking

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So, this just happened. I got a text message, supposedly from Nikki Haley, who, in case you’re not into U.S. politics, is running for the GOP nomination for president: It’s Nikki Haley. Do you have a minute to talk, Erin?

I promptly typed STOP and blocked the phone number.

Honestly, who thinks up these marketing campaigns? I have no desire to speak with Nikki Haley or any of her surrogates, if that is, indeed, who contacted me. Nor will I speak with anyone who thinks my name is Erin. Nor do I have a minute to waste on this distraction. The only plus: it gave me the opening for this blog post.

Which is about the multiple ways that we are pushed and pulled in so many directions that it’s hard to focus on anything substantive. Which is exacerbating what I’m finding more and more frustrating: the fact that my memory and attention, while still quite good, are just not as sharp as they were for most of my life.

Some of this is aging. I commiserate with my peers about the inevitable experience of walking into a room only to totally forget why I went there. Word finding, especially when I am stressed, is like tugging on a rusty file cabinet drawer. When I get blocked like this, I end up relying on words like “thingy” to express myself. Then there’s the aggravation of having two ideas in my head, writing one down, and in the process, forgetting the second idea until I sit back and let my mind settle.

Some of this is also about too much multi-tasking and interruptions and distractions and beeping and dinging computers, phones, and what-have-you. Tech gadgets certainly make life easier. I can’t imagine going back to using a typewriter, not only to avoid the wear and tear on my hands, but also because writing on a computer is just so much more intuitive and seamless. I value my iPhone, a portal to the world. But of course, that’s just the problem. There’s too much going on all the time that pulls me from what’s really important and requires concentration. It’s also a great magnet for procrastination.

So, aging and too many distractions are certainly contributing factors. But some of what I’m experiencing is brain fog that is associated with scleroderma. I had a conversation about this with my Boston Medical rheumatologist a couple of weeks ago. While scleroderma, thank goodness, is not associated with brain damage as are some other autoimmune diseases, like lupus, not much is known about what happens to people who have had scleroderma for decades, like me.

The way he put it was that people are living longer with scleroderma than in the past, but there have been no rigorous studies about how the disease affects the brains of those of us who have been dealing with this for decades. It’s possible that there is some impact on blood flow to the brain.

I found one study from 2021 that associated mild cognitive impairment (MCI) with systemic sclerosis (SSc), but the most relevant predictive factors were lower education, poor nutrition, and high ANA positivity. There are other studies that point to some mild decline in cognitive functioning in people with SSc. But I have yet to see any focus on long-termers like myself.

I was originally diagnosed with SSc, but am now catergorized as having localized scleroderma (LoS). Given some internal organ involvement, I’m probably somewhere on the continuum between the two. Regardless, something is going on. Maybe brain haze is a more accurate description than brain fog. My thought process is not blinded by fog; rather, it just feels fuzzier somehow. And because I’m very aware of it, it infuriates me, which doesn’t help, either.

What to do? The best way to deal with this, my rheumatologist agreed, is by doing the obvious: get enough sleep, eat properly, and exercise. With the arrival of colder weather, I’m falling short on the latter, which I know really does help to clear my head. So I need to get out there and walk, even if it’s chilly.

What else? Ignore ridiculous text messages from Nikki Haley.

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: Mathieu Odin

The Power of Art to Heal

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It’s been one of those stretches when all of my medical appointments jammed together. Since last Thursday, I’ve had one tele-med plus two in-person appointments at Boston Medical. Thank goodness for remote visits, or I would have had to drive into Boston to the same place on three different days instead of “just” two.

Even so, I am grateful for the excellent medical care I receive. I was reminded of this all the more while recently watching a new documentary, Angel Applicant, by filmmaker Ken August Meyer.

Meyer lives with diffuse scleroderma, the most aggressive form, and he tells of how he found comfort and insight into his experience from the art of Paul Klee, who died of complications from the disease in 1940, seven years after being exiled from Nazi Germany to Bern, Switzerland. Klee is a favorite of mine, too, for his luminous paintings, as well as for my sense of kinship with him as an artist who created some of his best works during the three years that he wrestled with systemic sclerosis.

Meyer’s film is the most meaningful, poignant, and true story of what it means to live with scleroderma that I have yet encountered. Though it is not in wide distribution, it won multiple awards this year and is currently available to stream on DOC NYC for $15, through November 26. I recommend it highly. You can find the link information here.

I must add that it was not easy for me to watch. Meyer’s experiences, though more debilitating than my own, resonated deeply. Everyone’s encounter with scleroderma is unique, and his has been brutal. Even as I have been living with my own version of this inscrutible disease for more than four decades, now, I gained a different sense of what I’ve been up against all these years that really shook me. At the same time, I profoundly appreciated how he has come to terms with all that scleroderma has thrown at him through his exploration of Klee’s exquisite art. We each have to find our own path in dealing with chronic illness. Meyer’s journey is inspiring.

Above all, the love of Meyer’s family and friends has been essential to his ability to persist through life-threatening challenges. I feel equally blessed.

To you and yours, Dear Reader, my best wishes for a healthy and happy Thanksgiving. 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: Communing with Paul Klee at the Museum Berggruen in Berlin, 2018. Photo by Al.

Merrily (NOT) We Enroll Along

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For those of us in the U.S. who are 65 and older, these weeks leading up to December 7 are our annual opportunity to choose a new Medicare plan. It’s called open enrollment season, but it’s not a season to be jolly. No, it’s a season to either stick with what works or bang your head against a wall.

I’ve used Blue Cross/Blue Shield here in Massachusetts for my Medicare supplement plan for the past four years, and it is not cheap, but it covers my many specialists at home and in Boston. On Monday, Al was reviewing his own coverage and spoke with a trusted insurance broker who recommended switching to another Medicare supplement program that would save about $45 a month over BC/BS. When Al encouraged me to speak with him, I declined.

Maybe it would be helpful, but I am totally risk averse on this topic. I know all my docs accept my insurance. The coverage is quite comprehensive. There is no copay.

Note that this is a Medicare supplement (Part F), not a Medicare Advantage Plan (Part C) that I’m talking about. I have avoided Medicare Advantage like the plague, because those plans are based on a narrow provider network, and I need broad access to specialists. Fine for seniors with minimal health issues. That’s not me.

A client who is very knowledgeable about how health insurance does and doesn’t work in this country has warned me that, eventually, Medicare supplements (Medigap) will be phased out and only Medicare Advantage will be available. I believe her, but so far, I’m still able to get the coverage I need. Not so for anyone enrolling new to the system. There are already limitations on who can get Medigap.

Ultimately, the glaring question is this: Why does this have to be so fraught and complicated? Given the current mess in Congress, chances of rational, comprehensive national health insurance in the U.S. is a distant dream. Even improving Medicare is a slog. A new law, part of the federal Inflation Reducation Act (IRA) that will cap out-of-pocket costs for prescriptions at $2,000 annually, won’t go into effect until January 2025. Efforts to include coverage for hearing aides in the IRA—an item needed by so many seniors that is a budget buster for custom hearing aides—failed for lack of political support.

I could go on and on, but I’ll spare you, Dear Reader. Let’s just say I find the whole topic infuriating. Health care in the richest country in the world should be a right and a common sense priority for public investment. End of rant.

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: Courtesy of Gratisography

Fall Back

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For the first time since I can remember, setting back the clocks this weekend didn’t bother me. Usually, the shift to earlier sunrise and the quickening of darkness at day’s end leave me feeling a bit claustrophobic until my circadian cycle readjusts. But not this fall. Oddly, the changeover feels like it fits.

There’s been a lot of debate about whether we should change the clocks at all. The U.S. Senate unanimously passed the so-called Sunshine Protection Act last year, but then the bill stalled in the House of Representatives. Given the current chaos in Congress, I doubt if it will go anywhere soon, but the goal is to make Daylight Savings Time permanent, nationwide. Why? The main arguments involve, in part, the notion that more daylight hours for evening activities will provide an economic boost for restaurants and entertainment venues.

Compare that to a push by the American Association of Sleep Medicine (AASM), which advocates for sticking with standard time year-round. Here the rationale is that standard time better aligns with our bodies’ natural rhythms. More sunlight earlier in the day helps our brains to shut down production of the sleep hormone melatonin and switch over to wakefulness.

I had read about this debate last year, and when we switched to DST last March, I felt very off-kilter. Now I feel back in synch. Coincidence, or the power of suggestion? I have no clue.

In any case, everyone seems to agree that switching back and forth twice a year is not good for anyone. According to the AASM, this time toggling actually increases risk of heart attack and strokes, mood disturbances and even suicides.

I’m curious to see how I feel as darkness settles sooner over the next few weeks. Not having to drive back from a doctor’s appointment in Boston in late afternoon or run errands at the end of the day definitely helps me to adjust. So does focusing on the stark light of November, when trees are bare and the shadows sharp, a time of transition that I find particularly striking.

And so does the knowledge that in just over six weeks, our days here in the Northern Hemisphere will gradually lengthen, once again. For all the turmoil in our troubled world, Nature’s rhythms soothe.

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: Jack Hunter

Small Miracles

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For months, at least since March and maybe longer, I’ve had a charcoal-gray pit of calcium sticking in my left thumb. I have not been able to budge it or tease it out with tweezers. It has been lodged there, staring at me as I change my bandages morning and night. Sometimes it hurts, other times not. Sometimes it gets infected. Mostly it just serves as a reminder to handle things with care so I don’t bang it.

That is, until this weekend. I was doing my evening routine of cleaning my ulcers and re-bandaging them when I suddenly realized that the calcium pit was gone. No bigger than a poppy seed, it lay there on a piece of tissue. Really? I wondered, rolling it between thumb and forefinger, you were that small all this time?

More calcium hides beneath the surface in both of my thumbs. In x-rays, they look like long white chains from thumb tip to below the joint connecting thumb to palm. Slowly but inevitably, the pits work their way out of the skin. There’s nothing I can do to get rid of them but wait until they are ready to emerge, then wait until each one dislodges.

There is an obvious lesson about patience, here. I’ve learned to play along, not to aggravate the skin and nerves by jiggling the pit in a vain attempt at extraction. As long as I’m careful with how I cushion it with dressings and use Aquafor ointment to keep it moist (but not too moist) eventually, the calcium will exit on its own.

But there’s something else that fascinates. And that is how my body continually surprises me with its ability to heal, scleroderma or no scleroderma. It doesn’t always happen the way I want it to, or on a convenient timeline, but it does happen. That a calcium pit the size and color of a poppy seed can cause so much discomfort and then, one random evening, bid adieu, is one of the mysteries of this disease and the miracles of the healing process.

And so, until the next one appears, I will tend the hole in my thumb as it fills and be grateful for the reprieve.

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: Victoria Tronina