Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

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.

Upon Reflection

· · 4 Comments

It’s dreary and raining this Sunday afternoon. I’m writing now because Yom Kippur, the Day of Atonement and highest holiday in the Jewish calendar, starts this evening and goes through Monday, which is the day I normally write this blog. It’s a somber day that caps a period of self-reflection. We’re supposed to think about who we’ve wronged during the year and make amends. We’re supposed to ask hard questions: How can I do better, be better to my family, friends, my community, in my relationship with God?

I wish I felt better prepared. I haven’t been able to find time to think about all of this in advance. So tomorrow will be a crash review of the year and what I need to improve on.

I know a few things. I need to be more patient with those closest to me—and with myself. I cannot be or pretend to be Wonder Woman and do everything for everyone else who needs me. Sometimes it really is best to step back, even if my ego says I could/should step forward.

There’s more, much more, to contemplate. It seems like an onerous task, at first, but by sundown on Yom Kippur, I always actually feel clearer and lighter—not just from fasting, but from introspection.

And so, to all who observe this holiday, I hope you, too, had a meaningful day. Whatever your faith or beliefs, 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.

Image: Walter Walraven

At Summer’s End

· · Leave a Comment

Labor Day has now passed, alas. The school year has already commenced in our fair city. Once again traffic is heavier on the Mass Pike when I drive into Boston for medical appointments and other events, always a sure sign that vacation season is over.

Time for sweaters and jackets and warm pants. I still leave the bedroom windows cracked at night, but not as wide open as in recent weeks. The heat has not switched on, yet, but it won’t be long before I’ll need it to get out of bed in the morning.

I won’t miss this summer’s sweltering heat and humidity. But I will, as always, miss the comfort of being able to walk outside without multiple layers of clothing. I won’t miss blasting air conditioning in public spaces that triggers my Raynaud’s and dries out my eyes. But I will, once again, miss the long hours of sunlight and the ease of wearing sandals.

New England has been my home for more than 40 years, now, and I still love living here, despite the prospect of another cold winter. I will adjust, as always, to the seasonal shift into fall. I always revel in October’s colors, the stark light of late November, and the pristine blanket of winter’s first snowfall.

In praise of temperate climates, here’s a link to a recording of Antonio Vivaldi’s The Four Seasons. Even as I’ll grumble as sunlight dwindles, there is still much to be grateful for.

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: zero take