Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

On the Mend

· · 1 Comment

I am happy to report that our latest bout with Covid appears to be over. Al is feeling fine, and I am regaining my energy. Thank goodness for Paxlovid, which began to ease my chills, joint pain, headache, and congestion within 24 hours. It leaves a metallic taste, but who cares? Better that than to be really sick.

On top of this, I spiked an infection in my left thumb, which has perpetual ulcers. I tried unsuccessfully for at least a week to treat it with topical antibiotics, to no avail. I finally caved in and started Minocycline, which usually clears out digital ulcer infections within a week or two, and I’m relieved that it seems to be working, once again. Especially after one very bad night last week when the stabbing pain from the infection woke me around 2:30 in the morning and made it nearly impossible to get back to sleep.

So, on both counts, I’m grateful for my body’s ability to heal.

We weathered the tail of Hurricane Isaias over the weekend—just rain here. If you live along the Gulf Coast or in the southeast U.S. where the storm was most severe, I hope that your power has returned and that you and yours are safe and sound, too.

And so, the leaves are starting to turn here in Central Massachusetts, gold and orange and crimson, mixed with lingering green. Our lavender hydrangea has faded to dusty rose. The sun is shining as I write, peeking from behind fluffy clouds.

You never know what the day will bring. But this one is shaping up nicely, thank you very much. I’ll take it.

Be well, Dear Reader.

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.

One More Time

· · 2 Comments

Just when you think it’s safe to go out, here comes Covid, once again. Al wasn’t feeling well last week, but we both thought it was a cold settling in.

Not so. By Friday, he was exhausted and slept all afternoon. And by evening, he asked me to give him a Covid test. Usually I’m the one who insists that I test him.

And, of course, it was positive. This led to calls to our PCP for a Paxlovid prescription and a frantic search online for a voucher to bring the price down. List price, even with a Good Rx coupon, was over $1500. Fortunately, he qualified for Pfizer’s PAXCESS® program, which brings the price to zero.

A good thing for me, too, because I tested positive on Sunday. In my case, the pharmacy price of Paxlovid was $366, but the voucher again zeroed it out. Not sure I understand the price differential. It’s outrageous, in any case.

Two doses later, I’m already feeling better, thankfully. On Sunday I was feeling achey, with chills and a dry cough. As I write on late Monday afternoon, my head is mostly clear, and I can breathe normally. No aches or chills. Just tired. Pretty good for 24 hours. The only downside of Paxlovid is the metallic taste in your mouth. But I’ll take that over Covid symptoms.

Moral of the story: stock up on Covid tests, be careful out there, and be sure to get the voucher if you need Paxlovid. Here’s the link.

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: A.C.

After the Deluge

· · Leave a Comment

It has been pouring rain here all weekend in an unusual early-fall Nor’easter. Lots of wind, especially along the coast. Fortunately, we’re an hour’s drive inland from Boston, so the impact wasn’t as severe here. On Nantucket, winds and surf were so intense that remains of an 1884 shipwreck washed ashore.

The storm arrived just in time for the Jewish holiday of Sukkot, an eight-day festival that follows the High Holidays. A special feature of the holiday is to erect a sukkah, which is an intentionally flimsy structure that has a roof made of plant material that enables you to see the stars at night. Al always cuts pine boughs for ours. One side of this rectangular “booth” is open, and the walls are made of fabric or tarps or other lightweight material.

You’re supposed to eat meals inside it, and some people even sleep in theirs. Sitting outside in the sukkah is like taking a camping trip in your back yard. The air is fresh and clean, and you still hear the crickets and other night critters this time of year in New England. It’s truly lovely.

But in a rain storm, not so lovely. We haven’t been able to eat outside yet. Al is waiting until the storm clears to decorate it with gourds.

Despite all the wind and rain, however, our sukkah is still standing. For many years, Al built and rebuilt our sukkah with old two-by-fours and sheets, but fortunately he finally agreed with me, after it nearly collapsed in the construction process last fall, that it was time to get a sukkah kit, which has a metal pole frame and, though impermanent, is a lot safer and easier to assemble. I used some bungee cords to anchor the bottom frame to the rail of our back deck. The pine boughs are drooping, saturated with water. But it’s all still there.

Nevertheless, the impermanence of the sukkah is the whole point. It’s a very tactile way to contemplate the impermanence of life and, for me, God’s protecting presence. We may think we have control in our safe, sturdy homes, with all of our belongings and tech gadgets and such, but the reality is that control is an illusion. Change is the only constant.

And so, this year, we’ve had to wait to spend time in our sukkah. Soon enough, Al will hang the gourds and we’ll enjoy eating inside it once again.

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.

The Best Medicine

· · 4 Comments

On Sunday, I got totally out of my comfort zone. I’ve been taking acting classes for several years, now, and over the past sic months, have also joined with some acting friends in an informal group working on scenes. This evolved into reading a play by Selina Fillinger, POTUS: Or, Behind Every Great Dumbass Are Seven Women Trying to Keep Him Alive.

And reading this very funny, raunchy play together led to a decision to do a staged reading of said play, directed by our wonderful teacher, on Sunday in a theater space. I played Stephanie, the President’s personal secretary, who is the comic foil, a role that included running around in a pink rubber ducky inner tube and rapping the introduction to the Declaration of Independence. Yes, you read that correctly.

I have never done anything like this before, and it was a hoot. I got a lot of laughs and had a blast. My acting friends were all terrific, our director was a dream, the audience totally enjoyed it, and we just had fun. Al smiled through the whole play.

There is a lot of stress in this world. There is nothing like joining with great, talented friends to put on a show and making others laugh for a few hours. The best medicine, indeed.

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: Caleb Woods

Back on the Block

· · 1 Comment

It was perfect weather for the beach on Sunday, sunny, in the 80s F, and given that we hadn’t made it to the Atlantic this season, we grabbed the chance for a day trip to Block Island. An hour’s ferry ride from the Rhode Island coast, it was our favorite vacation spot for years with our daughters, until everyone else discovered it, too, and the rents became ridiculous.

So Al and I try each year to get there on a Sunday. As luck would have it, however, given the beautiful weather, a lot of other folks had the same idea. Even as we left with plenty of time to catch the 11:30 ferry, we hit beach traffic that kept adding minutes to our arrival time. I took a GPS-recommended detour, only to have traffic get worse. Needless to say, it was not a relaxing arrival. When we finally got to Point Judith, there was no parking available, so we took a chance of parking in a four-hour spot and risking a ticket.

As it turned out, I had managed to read the ferry schedule backwards—the 11:30 ferry was the return ferry from Block Island—and the ferry to Block Island was actually departing at Noon. We got to the top deck of the very crowded boat with about 10 minutes to spare.

The island was hot and crowded. Still, we made the best of the afternoon, grabbing a good lunch at Persephone’s and then walking to the Town Beach, where we rented chairs and an umbrella. The tide was coming in, so when we took our walk up and down the shore, waves rushed and splashed. My pants got soaked, but I didn’t care, because the sand was cool and the surf, refreshing. And given the heat, my pants dried out quickly. We had our favorite dinner at the Beachcomber, Al got his ice cream at the Ice Cream Place, and we made the 6:15 ferry back, once again with about 10 minutes to spare. When we got to our car, well past a row of similarly parked cars with orange tickets on their windshields, ours had not been tagged. Hurray!

But the highlight of the trip came, surprisingly, on the ferry ride back. We were sitting on the top deck, once again, because there was no room on the other two decks. All of a sudden, people on one side started pointing and raising their phones to take pictures, standing on the benches to get a better view. I was able to get a glimpse of the phenomenon—a pod of dolphins, maybe a dozen or more, leaping through the water, heading toward the island. Everyone was thrilled, like a bunch of little kids. It was great. In that one moment, we were all in awe of Nature’s wonders. Everyone was smiling.

I’ve never seen wild dolphins before. Glorious. May your week be full of magnificent surprises.

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.