Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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.

A-Peeling

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Prepping vegetables for meals is one of those tasks that I often find challenging. I need to wear latex gloves when I cook so I don’t infect my finger ulcers, and this makes handling food difficult, because my fingers have been shortened by both resorption and surgery, so the tips of the gloves always flop around and get in the way. Onions, in particular, are tricky, and my lack of tears from Sjogren’s can make slicing them extremely uncomfortable.

Then there is garlic. I use a lot of garlic in recipes, but it is a beast to peel. I can’t do the trick with slamming the flat side of a chef’s knife on a clove, because I need to protect my hands. So I end up trimming the top and bottom with a paring knife and then slowly picking away the papery skin. Very, very tedious.

That is, until today, when I tried out my new silicon garlic peeler. At least a year ago, a good friend who is an excellent cook introduced me to this little gadget, which I thought was ingenious but never got around to buying—that is, until I had to order some new potholders last week to replace old stained ones that had attracted a mouse. As long as I was finally replacing those gross potholders, why not get the garlic peeler, too?

Here’s how it works: The inside of the tube is covered with bumps to create friction. You place the clove inside, then press down on the tube with the heel of your hand and roll it back and forth a few times. Presto! It neatly removes the skin and leaves you with a perfectly clean garlic clove! Rinse out the tube, and you’re good to go.

Whoever the genius is who invented this handy (literally), inexpensive tool, my heartfelt thanks. Now, if anyone knows of a good tool for easily peeling and slicing onions that won’t make me cry dry tears, I’m all ears.

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.

Second Skin

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Over the past year, I have been seeing a nurse practitioner at the Wound Center at our local hospital. She is absolutely brilliant, creative, and a great, empathetic listener—as are other members of her team. And she has introduced me to a number of wound care products that have made a significant difference in how I manage my digital ulcers.

Her latest suggestion was to try Cavilon™, a 3M product that creates a breathable barrier film on a wound. It comes in small, individual packets, about the size of a sticky note. It also, I just discovered, comes in a small pump-spray bottle, which is probably more efficient.

In any case, the stuff works. You wipe or spray it on the wound and it quickly dries to a clear, waterproof film, protecting the skin without need for a bandage. And, unlike other liquid skin products that I’ve tried, it does not burn.

For years, I’ve wished for a dressing that I could use at the first sign of an ulcer, to prevent it from getting deeper and more problematic, requiring months of bandaging twice a day. I’ve been experimenting with Cavilon for a few days now, and it seems to fit the bill.

In particular, my skin grafts from hand surgery in 2017 get very delicate in the winter, exacerbated by dry heat. Two of the grafts have cracked over the past month, requiring bandages. But right now, as I type, I just have the Cavilon barrier on them. They don’t hurt, they are not cracking or peeling, and best of all, no bandages!

Cavilon is available online. You can learn more about it here. Please note that it is not recommended for infected wounds. And, no, I am not getting paid for my views. Just want to pass along my experience with a game-changing wound dressing. 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.