Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Confidence Boost

· · 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

Short Is Beautiful

· · 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

Small Victory

· · 2 Comments

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.

Nuts and Bolts

· · Leave a Comment

Picking up small objects—especially when they’ve dropped on the floor—has been a challenge for decades. Keys and coins are particularly difficult. Because my finger tips have resorbed and I don’t have much in the way of nails, it’s really tricky to grasp narrow edges and flip the object into my palm. This has prompted some creative problem solving over the years, such as using a piece of scrap paper to slip under the offending item, or pressing on its edge with my toe to leverage the other side.

It’s become all the more challenging since my hand surgery. I’m now missing several finger tips altogether, which makes it that much harder to grasp little stuff.

Or so I thought, until I underwent a fascinating OT assessment last Thursday. I had scheduled this appointment to help determine how much sensitivity is left in my hands. I met with one of my hand surgeon’s occupational therapists, accompanied by two students, who politely asked if I minded their participation in the assessment. I’m always glad to teach, and I certainly provide a rare case study, so I welcomed their involvement.

And here’s what I had to do: I sat across from one of the students, who served as time keeper and recorder. She emptied a box of small objects on the table—a wing nut, a large and small hexagonal nut, a small square nut, a washer, a key, three coins (penny, nickel and dime), two sizes of safety pins, and a large and small paperclip. My task, using first my right hand alone and then my left, was to pick up each object and place it in the box. If I couldn’t do it, I would slide the object off the table into my other hand, but this reduced my score. The test was timed.

This was tricky. I completed both tests in under two minutes, but I couldn’t pick up everything with my left hand. Still, all were impressed by my dexterity. I was surprised, too.

The next step was to repeat the test on each hand—with my eyes closed. To my amazement, I actually did better on this round with my left hand, picking up every object, and doing it faster than when I had my eyes open! Clearly, the fact that I know I’m right handed and assumed that I couldn’t do as much with my left hand affected my approach to the puzzle when I was able to see. Very interesting proof of how expectations can affect what we think we can accomplish.

The final test involved closing my eyes and having the student place each object in my palm (right hand first, then left). I had to identify the object and place it in the box. By now I knew what each item felt like, but manipulating without being able to grasp it involved some juggling, and sensing contours was not so easy without my fingertips, which I can’t bend enough to form anything close to a fist. Nonetheless, I got all the answers right with each hand.

The team was very enthusiastic. I certainly exceeded their expectations, as well as my own. The conclusion? Despite all the damage to my hands over the years, reduced sensitivity and significantly reduced dexterity due to my recent surgery, I can still sense quite a lot. I may have to approach the process of grasping things with new strategies, but the basic information is still transmitted accurately from my hands to my brain.

Thank goodness.

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: Konstantin Olsen

How’re Y’all Doin’?

· · 2 Comments

Punxsutawney Phil may have seen his shadow last week, predicting six more weeks of winter (of course, technically, there are always about six more weeks of winter after Ground Hog Day). But Al and I took a break from freezing cold at home and headed south Wednesday night, landing in New Orleans for a long weekend. On Thursday, we were walking around without coats. Even when the weather dipped into the mid-50s, it was still welcome, compared to Massachusetts.

I’d been imagining this trip for several years as I worked on the first draft of my novel. Now that I’m starting revisions, I need to know more about my protagonist, who immigrates from France to New Orleans as a child in the 1870s. So the plan was to mix research and fun, to escape winter’s frigid clutches and celebrate my healed hands. And celebrate, we did.

NOLA is known for its incredible cuisine and did not disappoint. The jazz was great, the art provocative, the neighborhoods intriguing. Most people we met were welcoming and went out of their way to be helpful. Strangers looked us in the eyes and greeted us with a friendly “How’re y’all doin’?” as they passed us by. We caught Mardi Gras beads flung from parade floats (celebrations fill the month leading up to Fat Tuesday), noodled around stores and art galleries, walked and walked and walked. Our Lyft drivers told us about life in their home town and their experiences during and recovering from Katrina. On Sunday morning before we left, we strolled along the banks of the mighty Mississippi in Crescent Park and watched a sky blue freighter steam slowly past.

My research included an immersion in selected materials at the Historic New Orleans Collection, a walk through the Hebrew Rest Cemetery, a look at the city’s oldest hospital, rambles through the Garden District and Faubourg Marigny neighborhood to photograph the many and varied styles of housing. I thought about light and heat and immigrants and masks.

Saturday evening, we discovered a vintage costume shop, filled with bling. As Al shopped for the loudest tie he could find for Purim (a Jewish holiday with its own carnival vibe), I scanned the racks and discovered a beautiful beaded overblouse. I tried it on. Lovely. But when would I ever wear it? I left it on the rack, and we went to dinner across the street.

Good as the meal was—outstanding Middle Eastern food—I wondered. Why not? If the store was still open when we finished, I said to Al, I’d like to go back. As we walked up to the door, the owner and her clerks were about to lock up. But she welcomed me inside. “You need to make your own festivities,” she said as she wrapped the overblouse in white tissue paper and placed it in a purple plastic bag.

Even with the freezing temperatures here, I’m glad to be home. We packed a week’s worth of touring into three-and-a-half days, I was fighting a cold, and I’m tired. But it was well worth every minute. My hands held up. No infections. Many sights and ideas to mull. Make your own festivities, 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.