Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

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.

En Route

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Traveling always involves a lot of logistics. Last week, all the more so. Months ago, I had planned a three-day, Sunday-through-Tuesday business trip to NYC. The first two days were devoted to board meetings for a philanthropy of which I am a trustee, including a day of strategic planning that I had helped to organize. The third was a full day meeting with clients. I had piggy-backed that third day onto the first two in order to save myself physical wear and tear from traveling to Manhattan twice in one month.

What I had not been able to anticipate, however, was the state of my hands and my back (of which I have written a lot in recent posts). What to do? I couldn’t/didn’t want to cancel out, but I wasn’t sure how to manage. Would I be able to handle my luggage? How would I keep my hands from getting more damaged or protect myself from picking up yet another infection?

My initial plan to protect my hands from lugging a suitcase on and off trains and through subways—use a backpack—was unworkable. With all the supplies I needed to bring for hand maintenance, personal hygiene, medications, etcetera, even packing very lightly for clothing and using Al’s nylon backpack, the thing was way too heavy and unwieldy for my slow-healing, strained back. So I switched over to my wheeling carry-on. But what to do about getting around?

Aha! Obviously, I had to rethink ground transportation. Time to rely on taxis or Lyft or other options. Saving money was not as important as saving my health. And if I did use the subway, I decided I’d only do it if there was elevator access or easily walkable ramps.

As for pulling my bag along Manhattan sidewalks, I planned to keep that to a minimum, not only because of the crowds, but also because many of the streets and sidewalks in Midtown are either under construction or aging and in need of repair.

Sometimes I improvised. When one of the trains I took had split upper and lower deck seating, I stayed in the middle on a jump seat to avoid lugging my luggage and made friends with the conductor, who helped take my bag off the train to a lower platform.

Everything worked out better than expected. From my Monday meeting, located at a Wall Street law firm, I was able to get a courtesy car ride to my Midtown hotel. On Tuesday, I simply checked my bag at the hotel, went to my meeting in Chelsea, and picked it up on my way back to Grand Central, which was a five minute walk down Park Avenue. Train transfers were relatively easy. The one time I used the subway, I only had to carry my bag up and down about six steps.

As for my back, I wore a thermal heat pack all three days and brought my deflatable back pillow to every meeting. I made sure to keep up with regular doses of acetaminophen and ibuprofen. And I took meticulous care of my hands.

It was a long trip on my own when I wasn’t feeling my best, but successful in the end. As my train pulled into New Haven, where I had parked in the overnight garage, I was exhausted and relieved. I couldn’t wait to get in my car and drive home. But. The one thing I hadn’t planned for, the inevitable travel glitch that had nothing to do with my health issues and everything to do with mindfulness or the lack thereof was this: I’d left an interior light on in my car when I’d parked three days prior, and the battery was dead. An hour later, AAA arrived and charged it right up, thank goodness, but I was not a happy camper during the wait.

Successful travel, especially when you deal with chronic health issues, requires a lot of advance planning. But the unexpected is inevitable. You can be certain I will always check interior light status whenever I leave my car from now on. But the other lesson reinforced from my trip was that I can’t anticipate everything. Nonetheless, when traveling alone, I can trust myself to solve it.

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.

Feed the Dragon

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This is an experiment. I am dictating this blog post with voice activation software. I’ve considered making this investment for some time, but my digital ulcers finally made the decision for me. My fingers have been so sore over the past few weeks that the only way to help them heal is to stop typing. And I can’t stop. Writing is my livelihood and lifeblood.

The investment, even in the first few hours of learning how to use my new Dragon software, is already paying off. This is an absolutely amazing experience. The transcription is quite accurate. I still have a lot to learn and, to some extent, I’m mixing keyboard corrections with dictation. But 99 percent of what I am writing here is voice dictation. And that’s just with the limited skills I’ve learned in a basic tutorial.

One of the great things about dictating is that the words appear on the screen faster than I can possibly type. At the same time, the process of translating thoughts to a sequence of spoken words is going to take some getting used to. Even as I hear the words in my head whenever I type, there is a seamless mental process that translates those words through my fingers to the keyboard and onto the screen. In speaking those words to the dictation software, I almost have to ignore the sound of my voice in order to focus solely on the words before me.

That said, I am thrilled to have such a powerful alternative to typing with my fingers. I’ve been playing with emails and text messages, and this blog post is my first attempt at writing something longer.

There are, of course, some amusing aspects to the software. Think AutoCorrect on steroids. There is a whole lexicon of commands to learn. For example, if you mess up what you just dictated, you say “scratch that.” However, I actually had to type that phrase just now, because the software thought I was giving a command. So, there’s a lot to learn.

I also wonder how dictation will affect the way I hear the music of words, phrases and sentences. Will my writing become more conversational just because I’m speaking to my computer? Or will it sound more stilted to my ear because I have to speak in phrases . . . at least for now.

My new Dragon has little wings. It needs nourishment and attention. We must exercise together before it will really be able to fly. I can’t wait to see the view.

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: Dragon Medallion, Ming dynasty (1368-1644), silk and metallic thread tapestry, Metropolitan Museum of Art.

While the Soup Simmers

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I’m writing on Sunday night, as the Egyptian potato soup simmers on the stove and our community radio station plays a Middle Eastern mix. I’ve been cooking all day for our Monday night Passover seder, and I’m feeling good. A lot better than I anticipated this morning, when I woke with pain in my ulcers, an aching foot and one thought: How am I going to get through the cooking marathon today?

I groused at Al. I rubbed my temples. I studied the long list of fruits and vegetables that I needed to buy before lunch and realized I’d forgotten to ask Al to pick up one key ingredient from the kosher market in Brookline (an hour’s drive from home) several weeks ago.

He suggested checking the Passover aisle at our local supermarket, just in case they had those kosher-for-Passover hearts of palm. I agreed, then thought of an alternative in case they didn’t. I knew Al stood ready to serve as sous-chef, as need, for all the chopping and peeling ahead. Time to dive in.

To my astonishment, when I got to the store, the Passover aisle was still well-stocked, including hearts of palm—three cans, even. I moved on to the second supermarket and filled my cart with fresh strawberries, blueberries, blackberries, bananas, a mango, avocados, cauliflowers, leeks, romaine lettuce, potatoes, beets, onions, garlic, celery, parsley, asparagus, baby spinach, eggplants. At the check-out, the cashier admired my choices and told me how much he loves vegetables (except eggplants). I told him how to enjoy beets in a salad (add gorgonzola and toasted walnuts).

By the time I got back home, Al had switched over our kitchen to all of our Passover dishes—the culmination of several days of cleaning and preparation. We went out for a quick lunch, and then I began cooking in earnest. The night before, I’d already started the pickled salmon, which marinates for a couple of days. Next up was curried eggplant. I was able to do all the peeling and chopping myself while Al worked on the yard.

Then came the Egyptian haroset, a mixture of dates, golden raisins, ground almonds and sugar syrup. Only one problem: when I placed the mixture in my little Passover food processor, it wouldn’t turn on. I tried another electrical outlet. No go. I asked Al to try it. Maybe I hadn’t aligned it properly. Zip. Four o’clock in the afternoon, and it was time for another run to Target.

I opted for an immersion blender and picked up a few other cooking items to make life easier for the rest of the week. Before we left for dinner, the haroset was well blended, cooked to perfection and chilling in the refrigerator.

By 7:30, I was back in the kitchen, separating nine eggs for the apricot sponge cake and cursing at the little pieces of eggshell that had dropped into the whites. But I persisted. Al helped me fold the meringue into the batter, the one part of the recipe I can no longer do.

Now the sponge cake rests upside down in its tube pan, cooling overnight. The asparagus are happily plumped with water, standing tall in their pan until it’s time to steam them tomorrow afternoon. The potatoes and leeks and celery and garlic and turmeric, salt, pepper, bay leaf and water have finished simmering in the time it took me to write, and the lovely mix is now cooling in the 70-year-old white enamelware that was once my mother-in-law’s Passover soup pot. Just need to add the fresh lemon juice before serving.

All that’s left for tomorrow are the spinach-cheese patties, the avocado-tomato-hearts-of-palm-pesto salad, the roasted cauliflower, the boiled eggs and the seder plate. That’s the easy stuff.

The prospect of cooking for Passover, with my once-a-year set of dishes, the crazy schedule, and the inevitable stuff that goes wrong, always overwhelms—especially because the holiday falls in the spring, when my ulcers are at their worst. But somehow, it always works out. And tastes great. And provides a beautiful setting for our seder. This year, more than ever, I am grateful that I can still make a splendid feast for family and friends, and focus on what really matters: what it means to be free.

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.

Superbug Superheroes

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It’s been one of those weeks for my hands. Cold temps, spring weather fluctuations, too many digital ulcers—the odds were against me, and I ended up with another infection, this time in the knuckle of my right pinky, that woke me three nights in a row before I started antibiotics. Slowly, it’s improving, thank goodness.

Which brings me to some important news. At long last, several research firms are teaming up to develop new classes of antibiotics. This is a major breakthrough, because there haven’t been any new antibiotics brought to market since, believe it or not, 1984. Much has changed in 33 years, particularly the fact that overuse of antibiotics has created a slew of drug-resistant bacteria—some deadly.

Here’s a March 30, 2017, article from the Washington Post that explains this important development: Quest for new antibiotics gets first major funding from global partnership.

Bottom line: We’re running out of effective antibiotics because the research investment doesn’t reap a profitable return for Big Pharma. Here’s a July 22, 2014, five-part series from Healthline that explains the economics and incentives (or lack thereof), as well as some promising research by start-up companies and small biotech firms.

Ultimately, this is a global health problem that requires global investment. I am profoundly grateful that I can take a yellow-and-gray capsule that kills the bacteria in my ulcer, allowing my skin to heal and sparing me more sleepless nights of significant pain. I know this research into superbugs will take time. In my book, those researchers willing to take on the challenge are the real superheroes.

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.