Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Home Improvements

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At long last, our kitchen ceiling is being repainted. This after, at long last, having the recesses of our two kitchen skylights repaired, a few years after the skylights and kitchen roof were replaced, after years of dealing with leaky skylights.

As you may correctly surmise, neither Al nor I are pros at home improvements. Al, by his own admission, is not Mr. Fix-It. I can see what needs to be done and how to do it, having learned from years of watching my dad fix just about anything. But I can’t physically do what needs to be done, because of my hands.

This is a source of endless frustration.

Years ago, when Al and I married and bought our first home, we worked side-by-side painting ceilings and window trim. Despite a few paint sprinkles on my glasses, I was able to adeptly use both roller and brush. Al did a great job wallpapering every room. I sewed drapes. This was before my scleroderma advanced to the point of really damaging my fingers.

Today, the idea of picking up a paintbrush or roller is a non-starter. I wish I could build things like my dad did, but wielding a hammer, even just to nail a picture hook, is a real challenge. I can still make things that are small or soft—sewing remains a favorite hobby, as long as I pace myself over weeks and even months. But no projects that are heavy, sharp or cumbersome.

So, instead, I have become adept at screening painters, carpenters, roofers, and other home improvement experts, to find the best work for the best price. If you can’t do, delegate. That’s the second rule of management.

The first one: know what you can’t do, and get over yourself. Easier said than done.

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.

Bounce-back

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As I write on Monday afternoon, the shadows of our yews dance on the window blinds of my home office. It’s a marvel, how they’ve bounced back—literally—from last week’s heavy, wet snow. Seven days ago, their evergreen boughs bowed low. Today, they reach again to the sun, trembling in a light breeze.

It’s cold outside, in the teens when I woke up this morning. Not as cold as one friend reports on FaceBook from her home in Montana, where Arctic temperatures hover well below zero. That, I could not tolerate, literally. This cold blast I can live with, at least temporarily. And there is my annual source of relief in mid-January: daylight is already becoming noticeably longer.

Often, these days, I think about how the only thing that is real is what is happening right now, in the moment. One day, we were digging out from more than a foot of snow. A few days later, the sun is bright and our hardy New England evergreens have recovered. A lesson in resilience.

Yews have evolved over millennia to grow springy boughs that aren’t broken by heavy snow. For us humans, resilience must be learned. Whether in response to chronic disease or dark news or whatever else is weighing on our hearts, resilience requires cultivation, attentiveness, experience. It takes practice. It takes patience. It takes living in the present and maintaining a long perspective.

But it is not a passive posture. If there is anything I’ve learned from living with scleroderma for more than 40 years, it’s that resilience also requires a willingness to face the present with a clear understanding of what is happening, what’s at stake, and how best to respond. For me, resilience is also a matter of faith and of trusting my intuition when facts and answers are murky.

That is not to say that I always feel resilient. I have to work at it, every day. There is much in this world that weighs heavily on my heart. All the more reason to sit back at my desk and study the pattern of dancing yew boughs on my window blinds on a cold and sunny Monday afternoon.

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.

Through Rain and Gloom

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It’s another one of those weeks when I have a cluster of medical appointments. And they involve a lot of driving. Monday dawned with a deluge of rain, which made the prospect of driving into Boston yesterday morning all the more delightful. Wednesday, the next double appointment day, will at least be sunny.

Both ways yesterday, the driving was intense. Visibility in the worst of the Nor’easter downpour (at least without snow, thank goodness) was about ten car-lengths. And, of course, there were some geniuses on the Mass Pike who chose to ignore all the electronic signs that observed that “wipers on means headlights on” and oh, by the way, this is the law.

The one big blessing in all this was that traffic was not nearly as heavy as usual, perhaps because people are taking off for the holidays ahead of time, or because they were smart enough to stay home. Despite all the rain, I was able to make the drive in a little over an hour, even driving below the speed limit.

I could have canceled and stayed home. But appointments are hard to come by, there’s never a convenient time, and I didn’t want to wait another few months to reschedule.

Most importantly, it was good to have my dental check-up and learn that my teeth have not resorbed more. It was also good to see my wonderful cardiologist, who gave me an A+ on my ECG and said my Type II pulmonary hypertension seems to be well-c0ntrolled with my current medication. There’s no cure for it, but I’m holding steady. And I need to exercise more. I know, I know. I will try to do better.

I was tired when I got home, but I made it safely and got the reassurances I needed that all is well, all things considered. Worth driving in a deluge.

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: Jessica Knowlden

600

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There’s something to be said for persistence. Or maybe just a well-honed habit. Whatever the reason, this is my 600th post on Living With Scleroderma. As of January, I will have been writing this blog for 12 years.

My body has aged and changed since that first post. Most notably, my hands required serious revision surgeries in 2017 and a long recovery. I developed Type II Pulmonary Hypertension in recent years (though I probably have had it, undiagnosed, for much longer). My mind is not as supple as it was when I started this project. My eyes require considerable tending for Sjogren’s dryness. I drop stuff too often. I need more sleep to function. And my hair is certainly grayer. Regardless, the fact that I remain healthy enough to keep writing is a profound blessing.

Here’s what I value about this blog: By giving voice to my experiences with this complex disease, I’ve become much more grounded. I no longer feel embarrassed when someone asks about my odd looking hands or stares at them. I no longer shy from talking about scleroderma with others. I no longer feel ashamed or awkward about it.

The other piece that I value highly: Hearing from you, Dear Reader, and how my weekly musings have helped you in your own life, with or without this disease. That’s the real reason I keep writing.

And so, my best wishes to you and yours for good health and joy this holiday season. That’s something we all need in the coming year. 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: Daniel Lloyd Blunk-Fernández

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