Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hand surgery

In Transition

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Dare I say it? Finally, spring has arrived. “I thought it would never get here,” one of my neighbors remarked as I walked by his house Sunday afternoon. I commiserated.

Despite last week’s snow (yes, snow), a few tulips, daffodils and hyacinths adorn gardens along my route. In our own shaded rock garden, cheerful miniature daffodils greet me as I enter the back door to our kitchen. Buds on our Callery Pear are swelling, and there is a reddish mist on the maples down the street.

Best of all, I am starting to shed my warm layers. I even walked with my coat open on Sunday. Without gloves. Miraculous.

In a burst of my own creative energy, I decided to start a new sewing project. I haven’t considered anything that hand intensive for about a year, now. The project is a light-weight, unstructured coat for transitional weather. I found it online, a pattern you download and print. It took me a few hours after I returned from my walk to piece together the tiled segments, then cut out each piece and mark with sewing construction notes.

On Monday, a few fabric swatches I’d ordered arrived in the mail. They are luscious, lovely wool tweeds, but I’m not yet certain if there will be enough yardage available for the coat (end of season bolts). So I will keep looking.

What pleased me the most, so far, is that the process of assembling the pattern pieces—aligning and cutting and taping—was both manageable and fun. No hand problems or pain. I know this is going to take some time to finish. I hope it won’t be fall before I’m done. But that’s the beauty of sewing a coat for transitional seasons; even if it takes me all summer to complete, I’ll be able to wear it when I’m finished.

As with everything I do now, I have to refigure how to use my hands post-surgery. Pacing myself through a sewing project is essential. I don’t want to mess up my hands in the process. But I also don’t want to avoid one of my favorite creative hobbies for fear of hurting myself.

Spring has arrived late this year. We may still have some chilly set-backs. I can’t recall when I last pulled out my sewing machine and serger—at least a year has passed. With longer days and warmer weather, I’m ready to try again.

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

Nuts and Bolts

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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

Special Treat

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I am getting really tired of winter. I know, it’s only a month into the season, officially. We’ve had one real storm and another day of snowfall; not so bad, so far. But it’s the extreme cold of recent weeks and the fluctuating temperatures that I’m finding exhausting. At least the days are getting noticeably longer, once again—a saving grace.

So it was this weekend that I decided to beat the winter blahs and treat myself to some new clothes. I have been wearing the same sweatpants, turtle necks and long sweaters, in varying combinations, for months, now. And I have not gone clothes shopping in a very long time—not since my hands began to deteriorate last spring. The idea of trying on outfits was anathema. I couldn’t manage it. Now that my hands have healed, a shopping spree was a real option.

It didn’t hurt that end-of-season sales were in full swing (ironic, since the season is far from over!). I gave myself a full afternoon, so I wouldn’t feel rushed, to check out some stores at a nearby mall. This, in itself, was a change of tempo, since I’ve come to rely on the Internet for the majority of my purchases.

I picked a good time, because the mall was not crowded. The stores I chose had only a few customers; sales staff were pleasant and helpful. And I scored big: a pretty and practical wardrobe for transitional temperatures, with coordinated layers that I can mix and match. All soft, comfy and relatively easy to put on and take off. And all within the modest budget I’d set for myself.

Most amazing, I actually had fun shopping! This has not been the case for a long time. Dressing, undressing and dressing again has been a huge hurdle. I haven’t been happy with how clothes fit. But I’d done enough homework to pick the right stores with options that fit my taste and pocketbook. In two hours, I was done, buoyed by success.

In addition, I realized that my vision, which has been blurred for weeks due to the hyperbaric oxygen therapy, is beginning to clear. When I had ventured to a mall several weeks ago for a small errand, the signs were so blurred that I felt dizzy. As I left the mall on Sunday, it suddenly occurred to me that I hadn’t noticed or felt disoriented by my inability to see objects that were farther away. So, more progress.

Snow on the ground will be gone by Tuesday evening, thanks to a day of heavy rainfall (fortunately we’re in a short warming pattern, or we’d be buried again). At some point, the crocuses will peak out of our garden. And I continue, thank goodness, to heal.

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.

Sideways

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I had my first visit with my new occupational therapist last week and learned a few things. I learned that it takes about 18 months for your nerves to rewire after the kind of surgery I’ve undergone on my hands—but that most of the change happens in the first 6 months. I learned that my skin grafts will never have full sensation, although I can sense more than I realized. And I learned that I’m not imagining how the skin flap on my middle right finger is sending confusing signals to my brain about what I’m actually feeling and how my finger is oriented. More on that in a minute.

My OT works in my hand surgeon’s office, so she has a ton of expertise when it comes to my specifics. This is a great blessing. She explained that even if some of my nerves don’t regenerate, others may learn to compensate. To get a baseline assessment, she had me lay my hands outspread (as much as I can) on the table, palm down and then up. I had to close my eyes while she tapped different spots on my fingers with a series of plastic filaments, from a hair’s breadth in width to the thickness of a pencil lead. When I felt something, I let her know.

This took a while, but what we discovered is that my ability to sense touch is better than either of us expected (a good thing) and that my grafts have both deep pressure sensation and the ability to detect heat and sharpness (a very good thing). So, at least, I should be able to avoid burns and serious cuts. It’s not a free pass, but reassuring.

My right middle finger, in turn, has good sensation except for the flap’s seam. Basically, skin on the right side of that finger is now folded over the top and connected to the left side, with the top third amputated. It looks odd and stumpy, but it works well enough. What’s curious is how I think I’m still touching objects with the side of my finger when I’m actually feeling with what is now the rounded tip.

My OT explained that the nerves in what used to be the side of that finger are specialized, and my brain is still registering sensation as if my finger is moving sideways. Combine this with the fact that the finger is now a third shorter than it used to be, and it’s no wonder I can’t quite figure out where it is relative to objects I’m touching. Fortunately, she said, this will resolve with time as my brain rewires. Fascinating.

More sessions to come over the next few weeks as I learn how to use my hands again. My homework is to practice curling what’s left of my topmost knuckles before I bend my lower knuckles to approximate a fist. That way I achieve more of a grip. I’ve discovered that it helps to practice this while holding the steering wheel of my Prius, which is thick and padded and just about the right curvature.

Mostly, however, I need to be more mindful of how I reach and manipulate objects. I suppose this will become second nature with time. But it doesn’t hurt to bring a sense of purposeful awareness into simple movements. A good lesson there, too.

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: Hunter Harritt