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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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managing chronic disease

Confidence Boost

Evelyn Herwitz · April 3, 2018 · 2 Comments

Passover preparations are always a major challenge for my hands, and this past week posed no exception. To my great advantage, Al readily accepted the role of sous chef, the only way we could do all the cooking in time for the first seder, which we hosted on Friday night.

Since we serve a lot of vegetarian entrees, there was much peeling and cutting and chopping. Staging the meal involves advanced planning and careful timing of what to make a day ahead and what to make within a few hours of serving. Al did most of the prep, and I did the strategy and stirring and seasoning. Our daughters helped with last minute errands and crunch time details. Per usual, we were working right up to the doorbell’s ring. But we made it, the seder was thought-provoking, the meal delicious and enjoyed by all.

Friday night, however, I was totally exhausted when our guests left. My feet were shot from standing all day in the kitchen, and my back ached. My hands, remarkably, were in pretty good shape. Our cousins hosted the second seder on Saturday night, which provided a good respite.

By Sunday, when we hosted another big family meal, I had rested up and was able to do some of the cooking on my own. Indeed, I haven’t done this much in the kitchen since my hands fell apart last summer. I could actually grasp the handle of a French chef’s knife and chop fairly efficiently. I was very careful not overdo, and I have no new digital ulcers, as a result (at least, not yet).

My confidence got another boost on Monday afternoon, when I graduated from my post-surgical occupational therapy. My OT checked my grip strength, compared to our last appointment about a month ago, and the exercises she had given me paid off with a 20 percent improvement. I am well within functional range, which is so encouraging.

All of this means a great deal at this time of year, when my hands seem to be most vulnerable. Though I have not found any definitive research on seasonal patterns in skin ulcers, the spring months are typically my worst. It was around this time last year when my digital ulcers began to go out of control, in part exacerbated by Passover preparations. But the weather definitely has something to do with it—the constant warming and cooling, the dry air from heating systems, the transitions from warm house to not-quite-cold-but-cold-enough outside—all seem to add up to more trouble.

I’m monitoring my fingers very carefully, trying to be mindful and set limits on what I can and cannot do. But it’s always good to discover that the boundaries are wider than I assume. Just like the snow that blanketed the trees Monday morning and was gone by sundown, looks and expectations can be deceiving.

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: Syd Wachs

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Filed Under: Body, Mind, Sight, Smell, Taste, Touch Tagged With: finger ulcers, hands, managing chronic disease, resilience

Step by Step

Evelyn Herwitz · March 27, 2018 · Leave a Comment

I’ve been walking a lot in recent days. Monday afternoon, the sun was bright and the air crisp as I took my half-hour afternoon walk around the neighborhood for the first time in weeks, after all the Nor’easters of late. Everyone seemed to be enjoying the sunshine. Neighbors chatted as their leashed dogs waited patiently. Couples strolled. A little boy pushed his scooter down an empty, dead-end street. Clumps of snow seeped silently into the ground.

On Saturday, I did more walking—about six miles. With a group of teens and adults from our synagogue, Al and I hiked to City Hall for the local March for Our Lives. After a rally of inspiring student speeches, several thousand of us walked down Main Street in support of common sense gun control, from City Hall to the old Court House, the line stretching for blocks. Al and I peeled off as the march circled back to City Hall, stopping off at the Art Museum for a break and then walking home.

I wasn’t sure if I could do it all. My feet are easily tired, and by the time we were on our way back, my knees and hips were protesting. But some ibuprofin and a nap helped. By Sunday morning, my body was mostly back to normal.

I’m lucky. My biggest worry when I go out for a walk is how well my feet and joints will hold up. Not so for too many children in our nation who have to worry about getting shot as they walk through their neighborhoods to school.

When I was in elementary school, we had air raid drills to practice what to do in case of a nuclear attack. The idea sounds ludicrous now. Once, when I was in the fifth grade, we took the hands of first graders and walked with the rest of the school to a nearby public building that housed a community fallout shelter. We all thought it was a fun excuse to get out of our classroom.

The lockdown drills to practice for an active shooter, so common for today’s school children, are deadly serious. We may not all agree on what needs to be done to end the scourge of gun violence in our nation. But we can at least agree that this is a public health crisis that demands everyone’s involvement in finding a solution. One step, one march, one vote at a time.

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: foot pain, managing chronic disease, resilience

Wanderlust

Evelyn Herwitz · March 20, 2018 · Leave a Comment

So . . . we ended up with two feet of snow from Skylar last week, and now we’re expecting another five to ten inches from the next Nor’easter, Toby, on Wednesday night into Thursday morning. (Who comes up with these names, anyway?) Fortunately, we’ve had some melting in-between.

But I’m really getting tired of this weather pattern. And I’m starting to yearn for our next travel adventure to somewhere beautiful and warm in the summer. Which brings me to the topic of traveling with scleroderma, or any other disabling disease, for that matter.

Travel is strenuous when you’re healthy. All the more so, when you have to deal with all the possible complexities of this disease. But I’m determined to keep visiting new parts of the world (new to me) and discovering other cultures and viewpoints, as long as I’m able, one way or another. The benefits of always learning and growing far outweigh the fatigue factor. So I’ve gathered a few travel resources that address some of the biggest issues for those of us living with some form of disability, below.

Many of the resources out there focus on wheelchair accessibility. Some also address the broader issues of traveling with a disability that is less visible—and therefore more readily dismissed by people who should know better. I’ve selected a range, here, to help you get started on your own travel adventure:

Lonely Planet Accessible Travel Online Resource: This free PDF includes a wealth of information, from a huge list of online resources to tips for traveling with access issues. Lonely Planet guides are a favorite of mine, and the fact that they make this one a free download is a big plus.

Rick Steves’ Tips for Travelers with Disabilities: You may know Rick Steves from his PBS travel program. This blog post list basic, common-sense tips for planning ahead, especially if you need a wheelchair accessible hotel room or wonder how to find accessible bathrooms in a foreign country.

Society for Accessible Travel & Hospitality (SATH): Founded in 1976, SATH offers travel resources, information for travel agents, plus travel tips and access information for people living with a wide range of disabilities.

Travelling with Scleroderma: This PDF download from Scleroderma Australia provides a great summary of how to travel with oxygen if your lungs are compromised.

Disabled Traveler/ SmarterTravel: Another useful blogpost with a roundup of online resources.

“What We Get Right About Accessible Travel” from CNTraveler: From my favorite travel podcast, here’s an episode featuring Alysia Kezerian, founder of the Instagram account Wheelies Around the World, and Traveler contributor Julia Buckley, author of Heal Me: In Search of a Cure. Both women travel extensively; both have disabilities. Kezerian has relied on a wheelchair since a spinal cord injury in her twenties, and Buckley lives with a rare disease that causes joint dislocation. Well worth a listen, for practical advice and a lot of inspiration.

Happy trails!

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: anxiety, managing chronic disease, resilience, travel, vacation

Waiting for Skylar

Evelyn Herwitz · March 13, 2018 · Leave a Comment

Once again, for the third time in two weeks, we await a major Nor’easter here in New England. This one’s name is Skylar, and it promises to dump at least 8 more inches on Central Massachusetts today, more on Boston. In the meantime, at least half of the 16-plus inches we got last Wednesday has melted. And by the weekend, it’s supposed to hit the 50s, thank goodness!

In preparation, I ran around for a couple of hours on Monday to complete errands before the storm. And did a lot of waiting. First, I had to wait a half hour to see my ENT, a follow-up visit after he had removed my ear tubes last month, post HBO therapy, to be sure everything had healed. Indeed, my eardrums are back to normal, which he confirmed in a five minute check-up. We commiserated about the approaching weather (his home had just regained power from the last storm) and I went on my way.

Next stop was Home Depot for a quick errand. I had to wander around to find someone who could direct me to the right aisle, but at least I had picked the proper section of the superstore and was able to get out of there in about 15 minutes.

Then I headed to the bank to make a deposit. Plenty of cars in the parking lot and another wait in line, as everyone else seemed to be on a mission ahead of bad weather. (Yes, I’m one of those people who do not trust taking a picture of my check on my smartphone and sending it electronically to the bank—not interested in expanding my digital footprint in that way.) The teller and I wished each other a safe day on Tuesday.

On to CVS to pick up some prescriptions. The clerk had trouble finding the second order, finally located it, then noted that our insurance hadn’t covered it. This required some follow-up (we’ve had a recent change in our insurance) and everything was straightened out, after more waiting. And waiting for the updated receipt to be checked into their system. All of this took about a half hour.

Finally, my last stop: blood work at the clinic near our home. I have to have a liver function test done monthly for one of my medications. I’ve been on this drug for many years and never (thank goodness) had a negative test. It seems like a huge waste of time and money. Even my rheumatologist thinks it’s ridiculous. But it’s required. Fortunately, I got right in. The phlebotomist wondered aloud if they would have to come in during the storm. “You’d be amazed how upset people get if their doctor’s appointment is cancelled,” she said, “even if it’s not safe to drive.”

Over the course of my two hours of running around, the sky changed from blue with bright sunshine amidst puffy white clouds to silvery gray. You can feel it in the air that snow is coming. Mother Nature has a way of forcing us to hurry up in order to slow down. Just enough time to take care of my to-dos before Skylar’s arrival. Then I’ll hunker down and simply watch the flakes fall.

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, managing chronic disease, resilience

Short Is Beautiful

Evelyn Herwitz · February 27, 2018 · 2 Comments

I’m down to two bandages on my fingers—one on each thumb—and it’s the end of February. Highly unusual. Friends have commented to me in recent weeks that my hands look better than they’ve seen in quite a while. That’s saying a lot, considering how the hand surgery reshaped my fingers.

I have a theory, and it’s based on a conversation that I had with one of the hand surgeons who examined me last August. I’ve noticed over the years that my right index finger, which was significantly shortened decades ago to correct a severe flexion contracture, rarely—if ever—gets an ulcer. I wondered aloud if the fact that it’s shorter somehow made a difference.

The hand surgeon confirmed my suspicion. A shorter finger means that the remaining blood vessels serving that finger are larger in diameter. That’s because blood vessels become wider toward the base of each digit.

I’ve had chronic ulcers in my finger tips for many years since they receive oxygen via the most damaged, narrowest capillaries, which can only provide a reduced blood flow. If what’s left, post-surgery, are the larger diameter blood vessels, then blood flow to the shortened fingers is improved.

I’ve lost the tips of three fingers. I’ve also lost two knuckles, which were the other problem areas in my hands. Essentially, now that the most frequently damaged parts of my fingers are gone, it appears that what’s left has better circulation.

Who knew?

Of course, now that I’ve written this, I have a nagging fear that I’ve jinxed myself. There’s a long way to go with the see-saw temperatures of late winter and spring, my worst season for ulcers. That’s when all the trouble started last year.

But at least, for now, I can enjoy the fact that I only need to bandage two thumbs—always sensitive at the tips where there is a motherlode of calcium pits under the surface. It only takes about 10 or 15 minutes to take care of them in the morning and evening, a far cry from the two hour marathon sessions over the summer for so many painful ulcers as my hands deteriorated.

Fingers crossed—what’s left of them, anyway—that my hands will remain in relatively good shape as the temps ebb and flow over the coming spring. Meanwhile, I’m stuffing 10-hour heat packs into my wrist warmers every cold day to stack the odds in my favor.

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: Joel Filipe

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Filed Under: Body, Mind, Sight, Touch Tagged With: finger ulcers, hand surgery, hands, managing chronic disease, Raynaud's, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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