Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

3-2-1

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The house is very quiet again. Over the weekend, Al helped Emily, our youngest, move to a new apartment in a new city. She had started her new job a few weeks ago, and come home for a quick visit to collect her furniture and pack up the rest of her belongings. This, following a year-plus search for the right first step in a career in higher education, working with students with disabilities. She found the perfect fit, and we couldn’t be happier for her.

But I will admit, as the U-Haul pulled out of our driveway, I got teary. This was it. She’s launched. Our eldest, Mindi, has been working for almost two years as an early intervention social worker in Greater Boston. So now, both of our daughters, very capable and dedicated young women, are on their own.

It’s one of the big goals of parenthood. We made it.

And the house is very quiet again. I find myself at a bit of a loss for how to fill the silence. It’s different this time from when our daughters were in college and then graduate school. Our home was still the common ground, the place everyone would always return to. Now, for both of them, it will be the place to visit. This is as it should be, but it still feels strange.

Some of this emptiness also derives from the fact that I cannot use my hands in the way I’m used to. My go-to instinct when I’m alone is always to make things, whether it be my writing or sewing or weaving or cooking up something special for dinner. Writing is now much slower with dictation software. The other activities must wait until my digital ulcers make more progress toward healing. I’m relying on Al for a lot of help to do the most basic tasks, from chopping vegetables to opening all sorts of containers. He has been a wonderful support, and I am very grateful for his willingness to do whatever I ask, but I wish I didn’t have to.

I started new medication to ease nerve pain, and it’s taking a bit of adjusting—finding the right dose and adapting to the side effects. The healing process is complicated. I’m back on antibiotics, once again. All of this and the need to constantly problem-solve simple tasks is tiring and leaves me feeling more vulnerable.

On the plus side, it’s finally summer. We ate our first meal on the deck Monday night. The oppressive humidity of the past few days has finally eased, and it will be a comfortable night for sleeping. My bandages have stopped glomming to my fingers as the air has dried out. This evening, as I write, I think (I hope) that my new medication is beginning to take the edge off the neuropathy in my hands.

On to the next chapter.

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.

Dispatch from the Trenches

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First, the good news . . .

Here’s what I discovered about my strained back over the past week: it’s really important to assess all factors that may have contributed to the injury in April. I originally thought that I had somehow hurt my back during a weeklong respiratory virus that involved too much coughing and sneezing. This was logical enough, because the coughing and sneezing—particularly the sneezing—immediately preceded the night when I stepped out of the car and struggled to walk.

What didn’t make sense was the amount of time it was taking to heal—going on 10 weeks, now, including a lot of rest, heat packs and physical therapy. Then I began to question something very basic: my desk chair.

I have had this chair for years. It’s a good office chair, but it doesn’t fit me quite right. I had bought a mesh lumbar back support a few weeks ago, but it wasn’t helping. So I decided it was time to try out some alternatives. Lo and behold, a very affordable mesh office chair with good lumbar support felt just right. I bought it, Al and I put it together, and I have been using it for more than a week. My back is almost back to normal. Eureka!

I’m still doing my back exercises, and I’m starting to take walks again to build up my stamina. All of this is a tremendous relief.

I wish I could say the same thing about my hands. It’s been one of those weeks when I wish I could unscrew my hands and set them aside to heal while I used a spare pair. There is no easy solution to the five very deep ulcers on my fingers, two on the left hand and three on the right. They are healing at a glacial pace, despite the arrival of summer. This past weekend, things began to deteriorate. Although, so far (knock on wood) I’ve avoided infections, I have developed nerve pain that feels like occasional, random electrical shocks in various fingers. No warning. Extremely upsetting.

In addition, it seems that I have also developed a reaction to the lidocaine gel that was so helpful over the past few weeks in minimizing pain. My skin began burning and looked very irritated. So I’ve been punting with steroid cream and antihistamines, awaiting upcoming doctor’s appointments.

Fortunately, I was able to schedule a last-minute appointment with my neurologist this Wednesday, whom I’ve had no reason to see for the past five years, to discuss pain management. I also discovered a promising ointment for healing skin ulcers that is backed by encouraging research; it’s supposed to arrive later today, and if it works, I will report back.

The bottom line is this: these ulcers will simply take months to heal. There is no getting around it, no magic Eureka moment when I realize I can change one element in my environment and make it all go away. I’ve consulted with an excellent wound care specialist and know that my care routine is solid. Now I need a good pain management regimen that doesn’t knock me out or cause other negative side effects, in order to go the distance, however long that may be.

I’m trying to be patient. I’m trying to be creative. I’m trying.

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.

Image Credit: Breno Machado

Stardust

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In his new book, Astrophysics for People in a Hurry, Neil deGrasse Tyson makes this stunning observation:

The universe continues to evolve. And yes, every one of our body’s atoms is traceable to the big bang and to the thermonuclear furnaces within high-mass stars that exploded more than 5 billion years ago.

We are stardust brought to life, then empowered by the universe to figure itself out—and we have only just begun.

This is a very elegant way of saying, yes, we are all interconnected, here on Earth and, in ways we do not yet understand, to the entire Universe. It’s a Big Concept, mind-blowing.

I had a tiny taste of that interconnectedness last week when I picked up a voicemail. The message was from a woman who identified herself as living in New York City. She had found my number through an Internet search (which was a little creepy, I have to admit—am I really that easy to find?) because she was in possession of a wedding scrapbook that belonged to my parents.

The date on the album was July 1, 1949—their wedding day.  She explained in the voicemail that she had acquired the album through an antique store in Beacon, N.Y., a town on the Hudson River about an hour north of where my parents used to live. She left a number and hoped I would call back.

To say I was shocked is an understatement. My mother died in 1999. A couple of years later, my father’s health began to decline, and we needed to move him into an independent living community. When we sold the house, there was an estate sale. I wasn’t present, but my older sister and my father were. Dealers came before the sale was open to the general public, looking for items to buy and resell. Later, when I was helping my father move into his new apartment, I realized that the wedding album had disappeared. All these years, I’ve wondered what happened to it.

Given the uncanny accuracy of the date on the album and location of the antique store, plus the friendly tone of the woman’s voice, I decided to respond. I also looked her up on the Internet and found that she had a studio in Manhattan. Her recording on her phone sounded legit, so I left a message. A couple of hours later, she called me back.

It turns out that she is an artist (hence the studio) and an aficionado of 1950’s ephemera. The scrapbook apparently contained all sorts of correspondence, including telegrams, congratulatory cards, newspaper clippings and more. About 15 years ago, she and family members had been nosing around the antique store, when she was drawn to my parents’ album. Although she didn’t purchase it, her family saw how much she liked it and bought it for her as a gift.

Much as she enjoyed it, early on, she considered trying to return it to a family member. But this was before the Internet was so robust. Recent events in her personal life compelled her to try again. And that’s when she found me.

(Mystery solved at last, it boggles my mind to think that the dealer who bought the album in the estate sale never bothered to check with my father and sister, sitting right there, to be sure that such a personal item really was for sale. But I digress.)

A couple of days after the artist and I spoke, a large package arrived via FedEx. It was the long lost wedding scrapbook, a revelation to me, because my memory was of a photo album, rather than such a rich compendium. Not only does it include a page from my mother’s diary on the day she got engaged to my father; it also includes many personal letters, such as my grandparents’ ecstatic correspondence when they learned that my mother was pregnant with my older sister. In the center of the album are my parents’ wedding portraits, plus two wonderful photos of my grandmothers in their elegant hats, holding glasses of champagne. I thought these images were lost forever.

The Internet is a source of so much that is vile in this world—and so much that is magnificent. Through the ether of cyberspace, empathy can spread. My deepest gratitude to the artist who thought enough to consider how much it would mean for our family to recover this lost treasure and took the risk to find me. Stardust, 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.

Adaptations

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Last week, I met with a wonderful occupational therapist about how to better manage tasks I do with my hands while my ulcers heal. She was a great listener, compassionate and insightful. And I learned a thing or two.

Adaptive tools have come a long way in the decades since I last had a consult of this type. I’m still skimming the catalog she gave me to figure out what will be most useful.  Already on order: a tool to help with personal hygiene, which is one of my biggest challenges right now.

In addition, I cut a piece of the foam tubing she gave me to slip on my computer stylus, and now I can use it in my right hand for typing along with two fingers on my left hand. The dictation software is good, but it does not allow for fluid writing for my more creative projects. So this is a stopgap.

And now for a really neat trick that she taught me — a new and improved way to tie my sneakers. There are plenty of gadgets, including elastic laces, that can make this easier. But this trick is just too cool, so I pass along to you:

Step 1: Tie lace left over right.

Step 2: Tie lace right over left. (If you sail or were a scout, you’ll recognize this as the beginning of a square knot. And, yes, you can also do it right-over-left and then left-over-right!)

Step 3: Insert the two ends of the laces through the center of the knot, leaving a loop on either side to form a loose bow.

Step 4: Pull each loop evenly at the same time to either side, and, voila, you have a neatly tied shoe! You may have to play with the size of the knot opening to make it work; a little practice makes perfect.

You can easily tie a double knot to secure it. Whoever was the genius who figured this out, my heartfelt thanks. May the adaptive force be with you!

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.

By Way of Explanation

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Just over a month ago, I received a comment from a disgruntled reader. She chose to unsubscribe from this blog because she felt I was dwelling too much on politics and religion, and not enough on issues related to the scleroderma community. That’s fine. She was certainly entitled to her opinion.

Ironically, in the weeks since, as I’ve slogged along with finger ulcers et al, I’ve been writing about nothing but micro-level health challenges that are the daily wear and tear of this disease. My fingers will be a long time healing, still (saw a vascular surgeon/wound care specialist recently who confirmed [a] the ulcers will need months of patient tending, [b] debridement is neither required nor recommended at this point, thank goodness and [c] I’m doing everything right), and I’m tired of writing about them.

The way I see it, if all I focus on are the minutiae of how I feel every day about my health, then the scleroderma has won. The healing process is so slow with these ulcers that if I keep reporting about it, the time seems to drag even more. My big victory of the week is I can now type again, with three fingers—two on the left, one on the right—as long as I don’t overdo. That means I can use my laptop and even write lying down on the couch, as I am right now, to rest my back (which is also healing slowly).

But there is much more to life than all this. There are big, troubling issues affecting our country and our world, challenging all of us. There are happy events (I had a great visit with my sister Memorial Day weekend; our younger daughter just landed a wonderful job), sad events (the recent death of a mentor of mine), and everything in-between.

Ultimately, living with scleroderma is about living. I don’t want to be reduced to writing only about this disease, even as it plays an outsized role in my world. I am more than the sum of all my doctor’s appointments and health challenges, and so are you, Dear Reader. That’s what I intend to keep writing about, and I hope you’ll stick around.

P.S. Apologies if you received a duplicate email of last week’s post—the blog misfired.

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.

Image Credit: Dawid Zawila