Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

700-plus

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I didn’t realize it at the time, but at the end of December, I wrote my 700th post on this site. I launched Living with Scleroderma on January 3, 2012, and have been posting nearly every week since, with time off for good behavior when on vacation.

That’s a lot of posts. While there always seems to be plenty to write about all the daily challenges of this complex disease, my goal since the beginning has been to emphasize the living over the scleroderma. Whether it is this autoimmune disease or another chronic condition, the biggest challenge of all is to understand that you are much more than your diagnosis. It is a part of you, certainly, and commands all too much attention some days. But I strive not to let my scleroderma define me.

Writing about it weekly, a good discipline in itself, has really helped me to maintain that perspective. Most days, even as I’ll curse like a sailor when I accidentally bang one of my fingers, right where the calcium is pushing just below the skin or at the jagged bone at the tip of my resorbed digits, I don’t really think about it. Scleroderma is a demanding presence in my life, but it doesn’t own me.

Because I can’t let it.

And so, Dear Reader, some of whom have been with me for the past 14 years, thanks for your interest, your comments, and your encouragement. May we all live the fullest lives we are able. Each day is a gift.

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: Beth Macdonald

It’s Never Simple

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A few weeks ago, I ordered new glasses. It’s been a few years since I’ve updated my prescription, mainly because I’ve had so much trouble with dry eyes from Sjogrens that it’s very challenging to get an accurate eye exam. My eyesight is often blurred due to lack of tears, and when I put in drops, they blur again for a while. Really tough to get that Goldilocks measurement.

Then there is the issue of frames. I have worn Silhouette frames for years, which are rimless and very lightweight. I have to be extremely careful not to wear frames that put any pressure on the bridge of my nose, because that will accelerate the formation of calcium deposits on the cartilage, which eventually needs to be removed to avoid creating an ulcer. I’ve gone through this uncomfortable surgery several times over the years, and the last time, the ENT plastic surgeon told me it will be very difficult to do again.

When I ordered my new frames, however, the optician persuaded me to try a different lightweight brand called OVVO, which seemed promising. Only problem is that my face is small, and they have limited small styles. I picked one out that seemed good and hoped for the best.

I got the frames last week. There are a few issues.

First of all, the prescription seems to be off. I can see very well when I read—even fine print. But my distance vision seems worse than before. So I have to have another eye exam. I can swap out the lenses at no cost.

Secondly, however, the frames are a bit too heavy. It’s one thing to try them on without any glass lenses, and another to wear them with real lenses. Even as the optician ordered the lightest weight lenses for me, they add just enough pressure to be too much.

Finally, I realized that the shape is not that flattering. I was trying to decide under pressure, when I didn’t have enough time to really think it through. Fortunately I can trade them in for a better pair, or I’d be out a hefty fee.

So it goes. Never a simple solution with chronicity.

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 Travis

Fast Forward

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Daylight Savings Time crept up on me this past weekend. Really, is it already time to set the clocks forward an hour? I find this adjustment jarring. I’d rather just let the sun tell me what time it is.

According to Harvard Health, we’d all be better off sticking to standard time. But DST has been a national law since 1966, and attempts to do away with it have consistently failed to pass Congress. Given all the insanity in Washington these days, no chance of this becoming a priority.

So, I dutifully set all our clocks ahead Saturday evening. I even went to bed an hour early, since I was pretty tired. It felt later. I should wake up fully rested, right?

Good plan. Didn’t work.

First mistake was reading a very good play after I turned off the TV. It only took me an hour, but that was the hour I thought I’d saved. Then I tried setting up my iPhone for a meditation to help me doze off, but at that moment, my phone decided it was time to update its operating system and shut down to load the software.

When that finally finished, I was too annoyed to relax. Eventually I settled down, then picked a sleepcast story that was far too interesting, all about traveling in Japan. At some point I dozed off, but then woke again to shift positions. Aargh!

By the time I finally was ready to sleep, it was at least 1:30 a.m., actually 2:30 DST. Reset my alarm for 9:00 a.m., which was 8:00 a.m. in my circadian cycle still tuned to EST. I got maybe five hours of deep sleep and gave up about 10 minutes before my alarm was set to go off.

Somehow, I still got through the day. As I write this on Sunday evening, though, I am ready to pack it in. Hopefully, my body will reset over the next couple of days. Check out that Harvard Health link, above, for some ways to ease the transition.

Sleep well, Dear Reader. Sleep 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: Eric Hoarau

Spring Beckons

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Nights here have been clear and cold, and the moon is waxing brightly. As I write on Monday morning, I’m anticipating tonight’s stunning view, when the moon will be full, a huge silver plate in the sky—that is, until 12:44 a.m. Tuesday morning, when a two-hour total lunar eclipse will begin. As the moon passes between our Earth and Sun, it will turn a deep red. Hence the name “Blood Moon.”

A full moon in March in this part of the world is also known as a “Worm Moon,” because it marks the approach of spring, when earthworms begin to emerge from the soil, aerating it for the season of new life. Our frigid weather and mounds of snow are starting to recede. I’m looking forward to springier temperatures soon.

As is always the way, however, this time of year also is the hardest on my hands. Dry heat at home and yo-yoing temperatures outside combine to cause my skin to expand and contract and shred and crack. I have to be extra vigilant about my digital ulcers. Right now I have five fingers bandaged.

Fortunately, I also have a well-timed appointment at our hospital’s Wound Clinic this Thursday, so I’m looking forward to their good advice. Their suggestion to use Cavelon barrier film is helping a lot. I spray it on several ulcers before covering them or leaving them bare as needed, both to protect and manage moisture from ointments.

On my worst ulcer, I’m using Cavelon and then Exuderm film to cover it, which retains natural moisture without macerating the skin. All that gets overlaid with a piece of very soft gauze and fabric bandages. It takes me about a half-hour twice daily to change all the bandages, but at least I’m still able to use my hands.

And so, spring beckons. If you’re a night owl with a clear view of the sky, I hope you enjoyed the eclipse!

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: Atul Vinayak

White Out

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As I write on Monday afternoon, all is white outside, once again. We are in the midst of a blizzard that has slowed down our corner of the world. Maybe a foot-and-a-half of snow when this is over later today, maybe a little less, maybe a little more—on top of all the snow that hasn’t yet melted from last month’s storm. Al has shoveled half our drive, so far, and is taking a well-deserved break. Thankfully, we still have power and heat.

All appointments and my acting class cancelled, once again. But we’ll catch up, eventually.

Big storms are humbling. And disorienting. Is it Monday? Or still Sunday? Does it matter?

Outside, the birds and squirrels know how to cope without worrying about what day it is or what comes next. I’m trying to take my cue from them.

Stay safe out there, 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.