Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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

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.

Fault Lines

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This past week brought more doctor’s appointments. The culture on my ankle ulcer came back positive for a rare gamma-negative bacteria. And, of course, I’m allergic to the sulfa antibiotic that is the treatment of choice.

So it was time to see my infectious disease specialist. And, of course, he was not available. Another very experienced specialist was covering for him, but when I asked for an appointment, I was told that his next available was in three weeks.

Now, I don’t know if the receptionist really understood what the doctor’s specialty is all about. But I wasn’t about to take no for an answer.

“This is an active infection,” I said. “I have to see him this week.”

She took my phone number and told me someone would get back to me. Soon after, I got a call from one of the nurses, who said the doctor had reviewed my test results and wanted to see me that day. Which I did. He gave me a prescription for a different class of antibiotics, and so far, it seems to be working.

It pays to be assertive, especially when dealing with the medical profession. Over the past three-plus decades, I’ve learned that you have to advocate for yourself. I don’t mean being obnoxious or yelling at hapless appointment secretaries. But medicine involves a lot of gatekeepers, some of whom insist on sticking to rigid rules of access. I do my best to be firm, polite, yet clear about what I need. That requires a willingness to push the envelope.

It also requires creative problem-solving. The other appointment that I needed was to see a wound care specialist. Several of my digital ulcers are somewhere on the skin damage continuum between second and third degree burns. I know they are going to take months more to heal. This is the worst they’ve ever been, and I need some serious advice.

When I saw my podiatrist about my ankle ulcer, he had referred me to the wound care specialist at his hospital, an hour-and-a-half from home. This physician is very good. But when I called for an appointment, I was informed that one of my other doctors, who is familiar with my digital ulcers, would have to send some medical notes.

Enter the world of HIPAA releases. I had two choices: to send records from my Boston Medical Center rheumatologist or from my rheumatologist at home. BMC, I soon discovered, would take 7 to 10 business days to process the written and faxed request. If I went through my local medical center, the request would only take a few days. But there was still the matter of then getting an appointment. All told, I estimated it would be a good month before I could actually be seen. Too long.

So, when I saw the infectious disease specialist last Wednesday, I asked his advice for a wound care specialist at my local hospital. He gave me the name of a vascular surgeon, and I then asked Al, who works at the hospital, to find out what he could. One of his colleagues, another social worker who knows this doctor’s work with patients, gave a sterling recommendation. I called the wound clinic and immediately got an appointment for this coming Thursday.

I’ve learned a great deal from living with scleroderma for three-plus decades about how to get the right care. You have to be tenacious, no matter how lousy you may be feeling that day. You have to understand the complexity of your disease, research about treatments, what’s covered under your insurance, what isn’t, how to find the right physicians, and how to get the answers that will really help you to heal.

And that’s just for starters. At the granular level, managing a chronic “pre-existing condition” is a whole lot more complicated—and stressful, and exhausting (not to mention expensive and time-consuming)—than soundbites or political slogans can ever convey.

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: Zoshua Colah

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.