Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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.

Flu Season

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Despite our vaccines last fall, the flu has found its way into our home. On Sunday afternoon, Al came back from running errands, went upstairs and went to bed. He never does this. He roused for supper and ate well, then lay down on the couch. Definitely out of character.

So I dug out a Covid test from under the bathroom sink. It had an expiration date of last June, but I gave it to him anyway, and it was negative. Then I took his temp. He was running a fever. Time to go out to CVS and pick up a few combination Covid/Flu tests.

It was dark and cold outside, about 16°F. I found the tests and an OTC med for his symptoms, and was on my way out the door when a tall, thin man standing by the side of the building called out to me. “Excuse me, Ma’am, but can you spare a dollar?” he asked. It was cold, I was in a hurry to get home, and I don’t usually have cash on me. So I declined.

As I sat in my car, with the heat on, organizing my purchases, I felt terrible. Here was a poor soul in the freezing cold, politely begging for a small handout. I thought of all the people in Minneapolis who are taking such good care of their neighbors under duress. I looked in my wallet and realized I had some bills. So I got out of the car, went back to the man and handed him a dollar. He was so grateful. He had no gloves, no hat, a shabby winter coat. It wasn’t enough, but at least it was something.

I thought about him all the way home.

Back at our house, I gave Al the new combination test. Still negative for Covid, but positive for Type A flu. Good grief. Called our medical practice, got some advice, and as I write Monday afternoon, I’m still waiting to find out if I can pick up some Tamaflu antiviral medicine for Al. I’m hoping the fatigue that has settled over me today is just fatigue.

And what of the man outside the CVS in the brutal cold? I hope he found warm shelter. I hope he bought something hot to drink. Next time I’m asked, I’ll do better.

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: Ales Krivec

Storm Watch

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As of midday Monday, as I write, we are immersed in white. Al shoveled a foot-and-a-half of snow for two hours this morning, then fell asleep in his armchair for a while. At some point this afternoon he’ll go back outside and finish clearing our drive. We’re expecting up to another three inches by nightfall.

I’m glad he took a break. The snow is fluffy, but even so, it’s a lot of work. I wish I could help, but between the extreme cold and my hands, there is no way for me to do so. Indeed, it’s been decades since I could shovel snow. The last time I can recall, we still lived in our prior home on a major street, and as I was trying to clear the foot of the drive, a plow went by and blocked it up again. The guys in the plow laughed.

Today, Al told me, the plow that was doing another pass on our street actually stopped and helped to clear the end of our drive as well as our neighbor’s across the street.

Looking out for each other is essential in a storm, all the more so today when the storm is not just weather-driven. To the people of Minneapolis, my heart goes out to all of you, especially to the grieving families and friends of Renée Good and Alex Pretti, as well as my gratitude for showing the world what it really means to be in community—in the most bitter, cold, savage circumstances.

I contacted my senators today to express my outrage and ask them to use every tool available to stop this madness when they vote on appropriations this week. It took all of five minutes. It’s the very least I could do. You can find contact information for your congresspeople here.

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.