Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Stand Up Act

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I’ve been thinking a lot about my posture, lately. Back in May, after I performed a scene from The Glass Menagerie as the culmination of my spring adult acting class, I watched a video of same and was dismayed to see how stooped I’ve become. Some of this is just due to aging, loss of elasticity, and my shrinking spine cartilage. But I also observed how I pull myself inward physically, a deep habit of protecting my hands. While others may not notice this, it was quite striking to me.

Nothing like watching yourself on video to get a reality check.

Ever since, I’ve been trying to remind myself to stand up straight, both to improve my overall health (the more I stoop, the more my whole body feels out of whack) and mental attitude (facing the world head-on). It’s getting a little bit easier, but my slouchy stance is like a strong rubber band that snaps back.

So, I’m going to try Pilates again. The last time I took a class was before Covid, probably even a few years prior to the pandemic. A couple of years ago, I tried yoga, only to throw out my back. It took weeks to recover, and I never returned. I used to enjoy Pilates, especially using the reformer equipment, and I really need a way to strengthen my core.

I found a studio that’s closer than the one I had been attending the last time, and my free intro half-hour is this Thursday. This studio also seems to have a really good range of classes for all skill levels, so I can work my way back into it. Only one problem: They don’t post their rates. Which I don’t like. This studio is part of a franchise, and obviously they want to hook you in with a free trial rather than scare you off with high prices.

So, I’ll just have to try it out and see if it’s worth whatever they are asking. I have enough experience with Pilates to know good instruction when I find it. And my health is priceless.

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: Joyce Hankins

What Next?

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Somewhere I read recently a recommendation that resonated, a way to manage stress. The concept was to “shorten your horizon.” The idea is not to stop setting goals or making plans or other future-oriented tasks. Rather, it’s about adjusting how far to look down the road in anticipation of events.

Given all the scary news of late, this seems like a sound approach to coping. Given, also, that I have a fiction writer’s imagination—both a blessing and a curse—I find this appealing. If I focus only a week ahead, rather than a month or six months, or a year, or, good grief, even beyond that, I have a much clearer grasp on what is more likely to happen, how I might be affected, what I can and cannot influence, and how to adjust expectations and plans accordingly.

Of course, reality has a way of throwing all of that into the hopper. The only truth we ever know is what is happening in this moment. And living fully in the present is truly the only way to find fulfillment in each day.

Which is why shortening your horizon can help you stay more in the present. If your mind is not always preoccupied with the future, especially the far future, you aren’t as distracted from appreciating what’s in front of you—particularly relevant with so much trouble in the world.

This is also an essential skill set for coping with a chronic disease like scleroderma. You need to learn what to watch for, seek out excellent medical advice, follow your treatment plan, but also appreciate what each day brings. Years ago, when I was first diagnosed, I decided I didn’t want to know the odds of survival, which turned out to be one of my best instincts. At the time, the expectation was about seven years, a terrifying prospect. I intuitively learned to focus on a shorter horizon back then, because to do otherwise would have been paralyzing.

So, here I am again, relearning that same lesson, as it applies to life in a tumultuous world. It’s second nature for how I manage my scleroderma. Now I just have to figure out how to master that outlook for events even farther beyond my control.

It’s a work in progress.

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: Nicole Avagliano

Checking Up

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Since I’ve returned home from our trip to Germany, I’ve had a lot of doctor’s appointments. Not because I’ve had an emergency or other complications. Just because my schedule fell out this way. Every so often during the year, the appointments stack up, like planes over Logan.

So, I’ve had an echocardiogram at BMC, a follow-up with my periodontist about my tooth extraction and pending implant, a check-up with my BMC pulmonologist #1 who follows me for interstitial lung disease, a check-up with my NP gynocologist, and a meeting with my new local rheumatologist, since my previous one left the practice. Later this week I have a check-up with my BMC rheumatologist, and next week appointments with my BMC pulmonologist #2 who follows me for Type 2 pulmonary hypertension, and with my podiatrist on the South Shore who saves my feet. I have a bookmark sticky note in my planner to remember to schedule a few tests for the fall, before the next round of visits.

Then I get a break for a few months, assuming all goes well.

It’s a lot of driving and time, and it can get tedious and exhausting. This is a complex disease that involves a lot of details and coordination of care. But I’m grateful that I have an outstanding team in place here at home and an hour-or-so-depending-on-traffic-away in Boston and environs. I’ve been dealing with scleroderma and its various manifestations for more than four decades, so it’s just all part of the rhythms of my life.

I’m also grateful that our gerontology team makes house-calls.

Stay well, all.

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: Kelsy Gagneben

Taking a Break

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I am happy to report that I got through my extraction of a resorbed tooth with no complications last Wednesday—no fun, but it’s done. So I was able to get my spring Covid shot on Friday, also without complications. My lungs have cleared from pneumonia,and I caught up a bit on rest over the weekend, along with enjoying a lovely Mother’s Day visit with my eldest in Boston. My finger ulcer heals slowly, but at least it continues to heal.

I’m also happy to report that my acting debut, a scene from The Glass Menagerie by Tennessee Williams last Monday night, was a success. First time I’ve performed in a play since the sixth grade, and I remembered all my lines (no small feat, giving how much harder it is to remember stuff at this age, especially with scleroderma brain fog).

And so, I will be taking a few weeks off for the rest of the month, to recharge. I’ll be back on this blog in June. In the meantime, Dear Reader, I wish you good health, good medical care, and that you make the most of each moment.

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

Rough Patch

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So, what I thought was “just” allergies last week turned out to be more complicated. When our geriatrics nurse practitioner came to our home for a check-up last week, she carefully listened to my lungs and informed me that I had not developed bronchitis, as I’d thought. No, I had pneumonia.

What? That was not on my bingo card. Glad she caught it before it got even worse. I started antibiotics that afternoon, and within a few days I was starting to feel like myself again. Thank goodness, because I was getting pretty worried about where all this was headed.

Also, on Monday night I had my acting class performance—first time on stage since elementary school, a scene from Tennessee Williams’s The Glass Menagerie. We’ve been rehearsing for months, and I sure didn’t want to have to miss it. (I’m writing on Monday afternoon, so fingers crossed all goes well.)

Next on the medical agenda is a tooth extraction on Wednesday and prep for another implant. So, yet another reason I need to get past this whole respiratory episode. The tooth is definitely failing, getting more sensitive, so it really can’t wait much longer.

Then on Thursday, it’s back to the Wound Clinic to check on my slowly healing ulcer. It’s improving gradually, but needs a lot of TLC.

When all that’s done, I need to get my spring Covid vax, I hope on Friday, if all goes according to plan. We’re traveling again soon, so all this has to be wrapped up by the end of the week.

Meanwhile, Al caught whatever I had that wasn’t allergies, and is doing better but still recovering.

Of course, it could always be worse. But this has been one rough patch. Here’s hoping we’re both finally on the mend.

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: Nik