Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Odd Things

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I thought it was a spider bite. A week ago Saturday, I had taken a leisurely afternoon nap on our couch, and when I took a shower later that evening, I noticed an odd red patch on the right side of my waist, with a few random bumps in the middle. I hadn’t felt anything while asleep, but it was the only explanation I could think of. It was mildly itchy, so I dabbed on some benadryl ointment.

There were other odd things going on with my body, too. The Wednesday before the mystery rash appeared, I had woken up feeling dopey. Couldn’t explain it, other than, perhaps, just not enough sleep. I went to my Pilates reformer class that morning, and after a series of tiring leg exercises, was unable to step up onto the reformer platform for the next set. In fact, I lost my balance and fell, to my instructor’s dismay. I was okay, just a little bruised. I expected a sore back, and sure enough, got one—especially on the right side.

Then there was a dull ache in my right abdomen that began around that Wednesday and did not resolve. I always have a base level of aches and pains, and plenty of rumblings in my gut, but this wasn’t shifting location. By last Monday evening, I was starting to worry. Al convinced me to get some answers, so I called my internist the next morning and got an appointment for Wednesday, a week after all the weirdness had started. When I spoke to the nurse to describe my symptoms, all I could tell her was that it felt as if something was torn on the underside of the skin that covered my belly.

I’ve known my internist for almost four decades. He is compassionate and a good listener. The exam room was freezing, and he apologized and let me skip changing into a johnny for the exam. As he pressed here and there on my abdomen (nothing really hurt), he noticed another pink patch with little bumps. “It could be shingles,” he said. The rash was in position along a dermatome, which is a band of skin above nerves that radiate from your spine to your front—a defining trait of the virus, which locates on one side of the torso.

What??? Shingles? I never had the vaccine, because the original version was not particularly effective, and I was leery of the new one, despite reports of better outcomes. I certainly did have chicken pox as a kid. I have vague memories of lying in my mom’s bed, watching black-and-white cartoons or game shows, covered with scabs. Both my daughters had horrible cases when they were young, and I never reacted. Of course, I was only in my thirties then, and shingles is most likely to attack adults over 50 who carry the Varicella-zoster virus. No one knows the cause, according to my doctor. There have been plenty of theories, but nothing proven.

In any case, my doctor gave me a prescription for an antiviral medication to ease the rash and other symptoms. These are long white pills, and you have to take five a day. I was still skeptical, but decided to go ahead and give them a try. What did I really have to lose, other than annoying side effects?

Good thing, too, because by evening, I found a huge patch on the right side of my back. I felt totally off after taking three of the pills, but by the next day, I was doing a bit better. Especially because I had no more new patches. As of Monday evening, when I am writing, the rash has continued to recede, and I have very gratefully avoided the worst symptoms (so far) of extreme nerve pain. No weeping sores, no scabs. So I’m not contagious, either, thank goodness. There’s been one fleeting sensation of needles and pins at the site of the abdomenal patch, but nothing since. That weird sensation in my abdomen seems to have eased up. Perhaps it was a sign of the nerve being attacked by the virus. The medication is supposed to be most effective when the virus is caught early, and I think I have lucked out (fingers crossed).

Chances of contracting this again are slim, but I need to do more research about the vaccine, to decide if it is worth it when I’m healed. I’ve read and heard varying opinions. The vaccine does not eliminate your chance of getting shingles; it only reduces the odds.

In any case, I also discovered that the first sign of shingles is often mistaken for a spider bite. If there is a next time, and I certainly hope there isn’t, I will know better.

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. Please view Privacy Policy here.

Image Credit: Pietro Jeng

Lacrimoso

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My grandfather’s violin is 108 years old. I learned to play it when I was in grammar school, and it has accompanied me everywhere I’ve lived for more than fifty years. This week, I am donating it to our public school system. Here’s why:

It was the summer between third and fourth grade when I first placed a violin under my chin. Our community was blessed with a robust summer music program. You could pick any instrument, borrowed from the school district, take lessons and play in a music ensemble. To the best of my knowledge, my parents only paid for private lessons. The rest was covered by local tax revenues. A long, long time ago.

I was among the shortest kids in my grade, and the violin I borrowed was a half-size. It was a hot summer, and I practiced those first scratchy notes in our unfinished basement, trying not to knock over my rickety collapsible music stand onto the concrete floor, playing for my father’s drill press, tool bench and table saw. Supposedly this was a way to stay cool, but I suspect my mother also didn’t want to listen to my novice efforts. It was creepy down there and not conducive to developing a love of the instrument, but I was an obedient kid and stuck with it. Plus, my older sister had already learned to play the flute, and I was not about to let her outdo me.

Persistence (and a dollop of sibling rivalry) paid off. By the time I had grown enough to manage a full-size violin, my father gave me his father’s instrument. Inside was a small, yellowed label that recorded its creation by one Samuelis Henricus Scheib in Nashville, Tennessee, on February 11, 1910. I played many pieces on that violin, auditions, solos, in chamber groups, All County Orchestra, and as first chair in our school orchestras as I got older.

For my sixth grade graduation, I played a solo accompanied by my teacher, Mr. Errante, on the piano, Meditation from Thaïs by Massenet. Near the end of the piece, there is a pause following a high harmonic, played pianissimo. The audience of parents, faculty and students broke into enthusiastic applause, and I can still see Mr. Errante beaming at me from his seat at the baby grand. I started laughing, but I managed to get through the final phrase, to a second rousing round of appreciation.

There were other memorable performances on my grandfather’s violin, including the first movement of Vivaldi’s Concerto for Two Violins and Strings in A Minor, played with my friend and orchestra seat-mate, Judy Parker, one summer with our student orchestra. I loved the bowing on that piece, a real workout.

Eventually, when I became concert mistress for our high school orchestra, Mr. Errante let me borrow the best violin that the school owned, and I set my grandfather’s violin aside. The tone was so far superior to what I had been able to produce on the family heirloom that I didn’t want to play it anymore. My senior year, I worked my way up to Mendelssohn’s Violin Concerto in E Minor. And that is as far as I got.

One of the reasons I chose the University of Rochester for undergraduate studies was my dream of taking violin lessons at the Eastman School of Music. But I never followed through. I played my grandfather’s violin in a chamber group on the River Campus a few times during my first semester, then set it aside. There were many complicated reasons why, including a romantic involvement with a guy who disdained the humanities as a waste of time—one of my great regrets. But I lacked self-confidence and was far too easily swayed by his strong opinions.

Even though I wasn’t playing it anymore, however, my grandfather’s violin travelled with me, a vestige of my former identity as a talented musician, a promise that I could always pick it up again. From Rochester to Pittsburgh to Springfield, Illinois, to Worcester, Massachusetts, it has moved with all the other trappings of my life and rested in its blue-velvet-lined case under my bed.

Over decades of neglect, the tuning pegs loosened, the bridge fell and the sound peg rolled around inside. When Al and I got engaged, he had it repaired as a gift. That was the last time I tried to play. Soon after, scleroderma claimed my fingers, and it was too late.

Still, I’ve held onto it, along with my favorite sheet music, for decades. It was just too hard to let it go—until Al recently made a decision to have his father’s viola, another family heirloom, repaired, for donation to the public schools through our local NPR affiliate. We’ve been listening to their PSAs for years, promoting the idea of giving unplayed instruments to the school system for students who can’t afford their own and want to learn. Nothing like a good role model.

Even still, I was hesitating to follow his lead, until one day about a week ago, when I woke up and looked at my post-surgery fingers and decided the time had come. We had it tuned with a set of student strings and the bow re-haired. When Al brought it home last week, I gently plucked the strings and held it under my chin one last time. Then I set it back in its case and said good-bye.

What’s the point of holding onto an instrument that makes no music? I have no more delusions that I will ever play the violin again. It’s time for my grandfather’s violin to find a new home. I hope it goes to a student who would otherwise never have had the chance to learn. And I hope whoever sets it beneath her chin will take good care of it, and pass it on when it’s 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. Please view Privacy Policy here.

Phantom

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Seven months have passed since my hands were “revised” with skin graft surgery, nearly five months since I completed 60 dives in a hyperbaric oxygen chamber. The weather is warming, the trees are in full leaf, the scent of lilacs lingers. And for unknown reasons, I have begun to experience phantom sensations in my partially amputated right middle finger.

Not pain. Just itching. It’s as if my finger is tingling in a non-existent tip. Quite peculiar. I want to scratch it, but there’s no there, there. Instead, I rub the bulb-like stump that remains, with its confused nerve signals that tell my brain I’m touching the side of my finger when I’m actually feeling what is now the top.

Usually, if I rub the stump for a few minutes, my brain reinterprets the sensation and the itching goes away. I wonder how long this will go on.

There are no ready remedies for phantom limb pain (fortunately, my experience is more benign). Non-invasive therapies include mild nerve stimulation with a TENS device, acupuncture and the mind game of a mirror box, which involves doing symmetrical exercises using the mirror image of your intact limb as a cue, while imagining that your amputated limb is mimicking the same movements.

My phantom itching is so intermittent that I doubt if exploring these or other options is worth the time. But I find the whole experience most curious, albeit annoying. How is it that my brain still thinks I have an itchy finger tip? The location of the itch is always the same, about a half inch above my stump, where the top joint used to be. The finger was actually longer before the surgery. Why that specific location in nothingness?

There is also the strange confusion of how I’m actually touching objects. All these months after surgery, the fact that skin from the side of my finger was used to cover the remaining stump still signals to my brain that I’m brushing objects with that side, even as the skin is now effectively oriented in a 90-degree angle to its original position.

I’m trying to teach myself how to consciously reinterpret what I’m sensing. How odd, to be dealing with this most basic way of interacting with the world at a time when so many assumptions about what is real and true are under siege.

Sensations are hard-wired. Or not. Sometimes they merely shimmer.

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: Sebastian Spindler

Eureka Moment

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As plastic supersedes cash for more and more transactions, it seems that those self-service credit card dip machines are ever more prevalent—and frustrating. I am not referring to credit card interfaces that you use to swipe or insert your chip card for payment at the checkout counter. Those are ubiquitous, but relatively easy to use.

No, the bane of my existence are those parking meters, train ticket machines, garage payment terminals, gas pumps and ATMs with slots that require a nimble grip and coordination to dip your card most of the way in and pull it back out. Some of these contraptions have little friction and are relatively easy to use. But the ones that grip your card are simply a disaster for my hands.

This was true even before my surgery. Now, with even less of a grip, I struggle to stick the card all the way into the slot, let alone pull out the card fast enough to spare myself a voided transaction.

A couple of weeks ago, I was trying to add value to my Charlie Card (for those of you unfamiliar with the Boston T, these are plastic cards that you tap at the subway turnstile to gain entry). I had no cash on me, so I had to pick the credit card alternative. And the machine had one of those dastardly tight credit card grips. I tried at least three times to dip my card, but the transaction failed to register. I was really aggravated.

Not knowing what else to do, I stepped aside to reorganize my wallet. Then, in a necessity-is-the-mother-of-invention moment, I had an idea. What if I used my nail clippers, the kind that you unfold into a V and squeeze the ends to trim your nails, as a way to grip my credit card? The card is too thick for the clippers to damage.

After a bit of fumbling to retrieve the clippers from my purse, I waited for the line at the ticket machine to clear and stepped up to try my experiment. Sure enough, one dip and my transaction went through! I was very pleased with myself.

Back home, I described my victory to Al. He had an even better idea: use a bulldog clip to hold the card. These are those metal clips with wings that you can flip up to squeeze the clip open and flip down when the clip is secured. They come in all different sizes, so it’s just a matter of experimenting to achieve the right balance of required finger pressure and fulcrum length.

So, there you have it. I hope this works for you, Dear Reader, if you share my struggle with credit card dipping. And if anyone out there has an even better solution, please let me know.

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.

Devil in the Details

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I have a small pharmacy’s worth of wound care supplies in our bathroom closet. Various types of gauze, bandages, dressings, ointments, tapes, heating pads, you-name-it, it’s there, the cumulation of decades of experimenting. For my very sensitive finger ulcers, I’ve found one particular brand of bandages that work best—Coverlet. They make a range of sizes, and my favorites are 3/4″ x 3″. They come in boxes of 100, and I order 10 boxes at a time.

Usually, I manage to order more before I run out. But not this past week. I haven’t needed to use as many bandages daily since my hand surgery (fewer ulcers because all the trouble spots have been amputated), so I’ve gotten a bit lax about reordering. I also mistakenly thought I still had some left, because the boxes were stacked on top of some other Coverlet boxes of different sized bandages that I rarely use.

Oops. Big time.

The issue is that these bandages are made of very soft fabric; I have never found anything like them in stores. They breathe and are comfortable all day long. As soon as I realized I had used my last bandage on Friday morning, I ordered another set of 10 boxes and grudgingly paid a steep rush fee. But the soonest I could get a guaranteed delivery was by this Tuesday.

What to do? I spent about a half hour online, researching fabric bandages. Fortunately, I found some decent substitutes at Target. Years ago, I used to buy generic fabric bandages from CVS or Target, but then they changed the specs and the fabric was coated with some kind of stiffening compound that rendered them useless for me. It seems that, in years since, these generics are no longer coated. The offending substance apparently was Latex, which many people are allergic to.

A couple of small boxes of the generic bandages did the trick over the weekend, although my thumb ulcer was not terribly happy with the alternative; the surrounding skin seemed more irritated. Fortunately, my shipment arrived early, on Monday morning, just after I had finished getting ready for the day. It was well worth the extra time to remove the substitute dressings and replace them with my good bandages. Immediately, my thumb felt better.

Before I stored the boxes in the closet, I marked the bottom two: “Second to last/Reorder” and “Last Box!”

Sometimes, the smallest details make the biggest difference.

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.