Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Wanderlust

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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.

Waiting for Skylar

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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.

Between Storms

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Last weekend’s Nor’easter was supposed to dump up to a foot of snow on our fair city, but we lucked out with only rain and wind and no loss of power in our area. Tomorrow, however, we are in for it—possibly a foot to 18 inches, if the forecast is to be believed for Central Massachusetts.

In the meantime, Al and I managed to escape for a visit with Emily, our younger daughter, in Philly, to see her apartment and meet her colleagues at work and take in some of the city’s many highlights. So it was on Monday that we went to the annual PHS Philadelphia Flower Show, which is the largest and longest running such event in the U.S. Sponsored by the Pennsylvania Horticultural Society, it certainly lived up to its reputation.

And so, Dear Reader, to help us all escape from winter storms and stressful news of late, here are some of my favorite images from our visit. Be sure to take a close look at the last one—it’s made entirely of pressed flowers.

 

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.

 

Short Is Beautiful

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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

Small Victory

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The other day I received a gift of an Audubon wall calendar, beautiful photos of birds, one for each day of the month. It’s big and long, and I found just the right spot in my office. But then I hesitated. Could I hang it myself?

This seems a trivial question. Of course, I could ask Al to do it for me. I haven’t wielded a hammer for months, maybe a year, even. Not that I don’t know how. It’s just that my hands were too damaged for so long, that the idea wouldn’t have even crossed my mind. But now that my hands have healed from all the surgery, could I still manipulate a hammer and a nail without hurting myself?

Years ago, when my father moved from our family home into independent living and, later, assisted living, I rehung his art collection. If memory serves correctly, there were 76 paintings, photos, etchings, block prints, drawings and more, all part of what  had once been my grandfather’s art. There were many beautiful pieces, and I wanted Dad to be surrounded by it all, so that he could still feel at home in his new, downsized setting.

It was a big undertaking, but I followed the method he had once taught me:

  1. Hold up the artwork to determine where to place it on the wall and make a light pencil line above the middle top edge of the frame.
  2. Turn over the piece and pull the hanging wire toward the top of the frame; measure the distance between the high point of the wire and the frame’s top edge.
  3. Then, on the wall, measure that same distance down from the pencil line. X marks the spot where the bottom of the picture hook goes.

Sounds complicated, but it’s very straightforward in practice and works like a charm. When I finished, his apartment looked like he was living in an art gallery.

The first time I set Dad up, for independent living in 2000, my fingers were still nimble enough to manipulate the nail and tack hammer without too much difficulty. By the second time I moved him, to assisted living a few years later, I had to make some adaptations for my hands. In order to hold the nail and picture hook in place, I had to place a piece of tape around them, tap gently with the hammer, then when the nail was partway in, I could remove the tape and finish the job.

Fast forward to Sunday afternoon, when I was contemplating the much simpler task of tapping one tack nail into the wall for my new calendar. My left index finger is now fused. So I couldn’t in any way risk banging it with a hammer. Fortunately, it fused into a position that enables me to still touch the tip of my thumb. Holding a nail was still possible, but I knew I needed to be very careful.

Unfortunately, our tack hammer disappeared somewhere over the past few years. All we have are two regular hammers, quite heavy in my right hand. When I picked one up, I wondered if I was making a mistake. But I had to try.

So, I marked the point where I needed to put the nail in the wall with pencil (just a dot through the top hole of the calendar). I had to manipulate the nail a few times to be sure that (a) I had a firm grasp and (b) enough of the head was above my fingertips so I wouldn’t hit myself. I choked up on the hammer’s handle so I wouldn’t have so much weight to swing. It took a few taps and moving the nail a couple of times, but . . . it worked!

The calendar now graces the side of one window in my office. It’s pretty and cheerful. Most of all, it’s a reminder that my hands are still capable of more than I think, more often than not.

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.