Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

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

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

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.

Olympic Interlude

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Nearly every night for the past 11 days, I have been reveling in the Milan Cortina Winter Olympics. Watching these amazing athletes’ extraordinary feats has been the best antidote to horrible headlines and stress. It has also helped me get through my bout with the flu and the lagging fatigue and residual, annoying cough.

I am a sucker for the whole spectacle. I feel elated when “old” athletes, who are at least half my age, triumph, as did Italy’s Federica Brignone, whose courageous comeback in the women’s giant slalom earned her gold. Honestly, her win brought tears to my eyes (to the extent I can make tears).

And my heart goes out to those who fall, like champion skier Lindsey Vonn and ice skating wonder Ilia Malinin. Vonn’s skiing career may be over (I really hope she doesn’t risk breaking her leg or shredding her ACL again), but Malinin will be one to watch in 2030. I wish him well and hope he learns from his Olympic experience to keep growing and striving for his personal best.

I will never be able to soar through the air like freestyle skier Eileen Gu, but I love watching her fly with such joy. I am inspired by the extraordinary grace and strength of ice dancers Madison Chock and Evan Bates. But what moves me the most is the sportsmanship of so many athletes from around the world, who compete so intensely and then congratulate each other so graciously.

Our world could use a lot more of that spirit. May it be so.

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: Passo Falzarego, Cortina d’Ampezzo, Italy, by Marco Czollmann

Tag, I’m It

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And so, despite my best efforts, I caught the flu, too. I thought I was being really careful taking care of Al, who quarantined in our home. Wore a mask, brought him meals, the whole bit. He came down with it last Sunday. By mid-week, I was still doing fine, even went to Pilates on Thursday. But then my throat started feeling irritated and I had a dry cough. Did grocery shopping, just in case.

By Friday I was dragging, but my Covid/flu test was negative, so I thought maybe it was just the onset of laryngitis, which I typically get twice a year, for whatever reason. By Saturday morning, I was coughing more, had a mild fever, and just felt crummy. Sure enough, the test came back positive for Type A flu, same as Al had, which is highly contagious. Apparently it can take up to four days after exposure to catch it. And that’s what happened to me.

So, I called our geriatrics practice and spoke at length to the triage nurse. Al had been on Tamaflu, an antiviral medication, which really helped him get better, with no side effects. But Tamaflu can mess up your gut, and I was already having some GI problems. Was it really worth it to take the antiviral? Fortunately, she recommended having a virtual urgent care visit with a physician on call. I was able to set up an appointment within the hour.

The doc was very personable and thorough (and his little daughter, who was home instead of at dance class because of yet more snow here, was adorable). He had read my chart and said it would be best to take the Tamaflu, given my history of interstitial lung disease with my scleroderma. Even if my GI symptoms got worse, it would be to my advantage to avoid serious respiratory complications. So, I followed his advice.

Al was well enough by Saturday to be able to clear the four inches of fluffy snow off the driveway and pick up my prescription. As I write, I’m on Day 3 of 5 with the Tamaflu, and I can report that my coughing has eased, my energy is slowly returning, and I can sit up and do some work instead of being bored out of my mind. However, my gut has remained irritated, though I’m not running to the bathroom as often. So, hopefully by mid-week this will all be just an annoying memory.

I must add that this happened despite getting a flu vaccination last fall. I’m sure it helped limit the worst of the virus, but this has still been no picnic. (All the more reason to get the vax if you haven’t already.) The fatigue is real, and I’ve coughed so much that my ribs are sore. I am very grateful for the excellent virtual medical care. It made a huge difference in my treatment and confidence level. And I was really glad to not need to venture out into the very bitter cold to be seen.

I hope you, too, Dear Reader, have access to similar good support. Stay safe out there.

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.