Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

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.

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.

In Transition

· · 2 Comments

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.

A Matter of Distinction

· · 2 Comments

A friend asked me the other day, “What’s new?”

“It’s my birthday on Wednesday,” I replied.

“Oh, are you going to be 65?!” he asked, intending it as a jest.

“No, 64. But 65 would be great, because then I’d finally be eligible for Medicare,” was my rejoinder.

I certainly am looking forward to being relieved of the stresses and uncertainties of employer-based health insurance. But in the meantime, I’m also looking forward to my birthday tomorrow.

Al and I decided to celebrate this past weekend, staying overnight close to Boston for a special dinner out on Saturday night, a great performance by Berlin-based Max Raabe & Palast Orchester at Berklee College of Music, a wonderful brunch Sunday morning with Mindi, and on to an afternoon at the Museum of Fine Arts. I came home feeling celebrated and refreshed.

This, despite some really nasty, cold weather that precluded any chance to wear festive springlike clothes for the occasion. Instead, I decided to decorate my hands.

I haven’t worn any of the beautiful heirloom rings that belonged to my mother and grandmothers in many years. Why draw attention to my fingers? They’re so distorted, especially now, after all the surgery last fall. Or so I’ve told myself.

But Saturday afternoon, as I packed my bag, I reconsidered. Why not? The jewelry reminds me of women that I loved. Both my grandmothers were very elegant, with incredible fashion sense and strong, individual taste. My father’s mother always wore a beautiful opal ring, set like a flower with small opals as petals.

As I child, I wondered why she didn’t have a diamond ring like every other married woman I knew. But now I can really appreciate how distinctive a statement she was making.

So that’s the ring I chose to wear for my birthday weekend. I could only fit it on my left pinky, next to my wedding ring. The gold of one does not match the other. I didn’t care. It simply made me feel good to touch its detailed surface and remember her. It also felt good to assert to my own sense of style.

My fingers are certainly distinctive. And I have ring to match.

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.