Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Spotlight

· · 1 Comment

This past Sunday, I sang a solo. Our congregation was celebrating our beautifully renovated synagogue. I’m the alto in a quintet that sings on the High Holidays and for special occasions. One of our numbers was a barbershop mix set to the tune of Billy Joel’s “For the Longest Time.” I had the lead.

What a great piece to sing! And it’s rare for an alto to have the main melody. We’ve been practicing for weeks.

But, of course, despite all that preparation and encouragement from my fellow singers, I was nervous. Not just the typical oh-my-gosh-I’m-performing-in-front-of-hundreds-of-people nervous. It was scleroderma-related.

Years of lung scarring have made it harder for me to inhale a full breath, and it definitely affects my ability to hold notes and breathe with appropriate phrasing when I sing. I also have dry mouth from Sjögrens, and when I sing, I never know if I’ll either (a) have to cough at an inopportune moment or (b) collect so much saliva in my mouth that I can’t pronounce clearly. On Sunday, I was constantly clearing my throat before it was our turn—just this side of feeling like my throat would guck up.

Then there was the senior-moment-side of nervous. As many times as I’d reviewed my words, I was afraid my mind would freeze and I’d forget. Since the words were in Hebrew, they were harder to remember, even as the phrases were familiar (the opening prayer of the blessings after meals). Lately, I find that when I’m more self-conscious, my brain can go on the fritz for word recall, as if a file drawer gets stuck and refuses to open until I relax.

As a fallback, I had my music in front of me. But I wanted to make eye-contact with the audience.

Finally, it was our turn to sing. Two of the other members of the group are experienced barbershop singers, which was a good thing, since we were performing a capella. My nerves eased as we swung through the tune. In fact, our voices blended beautifully. I had enough breath, I didn’t cough, and I didn’t lose my place. A good sound system really helped. I felt great. We received many compliments afterward.

Most importantly, we had a wonderful time and added just the right bounce to an already upbeat morning. Music has a way of bringing joy into the world. I may not be able to play an instrument any more, but I’m so grateful I can still sing.

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: Israel Palacio

Time Out

· · 2 Comments

Sometimes I feel as if my head is going to explode from our nation’s vicious politics. So it was a great pleasure and privilege to go with Al to one of our favorite getaways on Sunday, Block Island, just off the Rhode Island coast, for a relaxing Father’s Day. The weather was perfect; the sky, azure with wisps of clouds; the water, emerald and sapphire. I stayed away from my news feeds. Best of all—no crowds. Public school is not yet out, so it was the calm before tourist season begins

I read, watched Al brave 58°F water, walked the beach, took photos and collected stones and sea glass. I got my feet wet, too, even if my toes turned purple. (Added bonus: walking barefoot on wet sand helped me to remove a nasty corn from my left foot that had re-emerged shortly after my podiatrist took it out a couple of weeks ago, a huge relief and boost in my ability to walk without pain.) After supper and some shopping, we sailed back to the coast on the ferry’s upper deck, enjoying a beautiful sunset. Just what the doctor ordered.

Here’s a taste of our visit. Enjoy!

                    

 

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.

Odd Things

· · 4 Comments

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

Tone Deaf

· · Leave a Comment

Monday morning, I picked up our wireless landline phone to make a call. No dial tone. It sounded as if one of us had accidentally forgotten to hang up. I checked around the house, but our other two wireless phones were in place, and none had a dial tone. So I made the call on my cellphone, then forgot about it until later in the day, when I wanted to make another call.

This time, I called Verizon on my cell. And got stuck with the automated “assistant.” It asked me a few questions to determine the extent of the problem, tested our line remotely and set up a repair visit. The earliest date? Thursday.

Now, I’m fortunate to have a mobile phone. What about people who don’t? Plenty of folks rely on cell phones for all of their telephone communication. But not all. If I didn’t have a cell, and I didn’t have Internet, I would have no way to get in touch with Verizon to report the problem—or any other problem, for that matter, like a medical emergency.

Not long after I set up the repair visit, I decided to check the phone line. By a miracle, the dial tone had returned! So I went online and canceled the repair visit. Picked up the phone to make a call and . . . heard a high-pitched busy signal. Aaargh!

So, back on my cell, I called Verizon. Of course, now they had a record that I’d called and resolved the prior repair issue. “We’re sorry that you’re still having problems,” oozed the automated voice. It recommended trying to test the system ourselves, to save the cost of a service call, because now their remote test indicated that the problem involved internal wiring (before, the issue was external). I was getting more and more frustrated. The steps involved unplugging all our phone jacks, and then systematically testing them with a “corded phone.”

Who has a corded (aka old fashioned, non-wireless) phone lying around the house, these days? Fortunately, yours truly is a pack rat, and I actually had one stashed away in my closet. We tested the line. Still the annoying busy signal. I marched back to my desk and once again called Verizon on my cell. This time, I was literally yelling at the auto assistant, trying to get it to send me to a human being. After another five minutes of annoying questions, the same routine I’d gone through twice before, it connected me to a nice customer service rep in Albany, N.Y. (I assume he told me his location to assure me I wasn’t being farmed out to an international call center, a fascinating response to current politics—but I digress).

While he couldn’t really give me any more information than the auto assistant, at least he was pleasant, attentive, and able to hear the annoying busy signal when I held the land line up to my cell. He also could answer my questions about charges for any repair visit. Still had to wait until Thursday, but so be it.

Within about an hour of that call, our phone rang. The line was crackling, but it worked. Another hour later, it rang again, with a Verizon recording to see if our phone issue had resolved or if we still needed the appointment. The line was crystal clear. I cancelled the repair.

Thank goodness it’s fixed. But I still wonder about the person who can’t wait three days to have phone service restored, if the issue can’t be fixed remotely. What about older adults who may not be adept with mobile phones or able to afford them? What about people with health challenges that can’t wait? I wonder if the line was repaired remotely within a few hours only because I pushed back against the automated system to get through to a flesh-and-blood service rep?

Customer service is no service at all if it ignores the real needs of the customer. Are you listening, Verizon?

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.

Lacrimoso

· · 10 Comments

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.