Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

medication side effects

Getting a Boost

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I got my Covid bivalent booster vaccination last Thursday—Pfizer this time, as opposed to Moderna up until now. I scheduled the shot for mid-afternoon, knowing I could set aside Thursday evening and Friday for down time if I got sick, as expected from past experience.

While I did get draggy and had some achy joints, I was very pleasantly surprised that, this time, the aftermath was not debilitating. No rash at the injection site. No real brain fog (other than my normal age-and-scleroderma baseline). I was able to sleep through the night. I modified my morning exercises to accommodate my sore left arm, but otherwise went about my day, editing a blog for a client, writing more in Novel 2. It was only by late Friday afternoon and evening that I ran out of energy. But by Saturday morning, most of the aches were gone.

I don’t know if this is because I went with Pfizer. From what I’ve read, the two versions are effectively equivalent and highly successful in reducing risk of severe disease from both earlier Covid variants and Omicron BA.5. Maybe there has been something in the Moderna vaccine chemistry that wallops me. In any case, the FDA says it’s fine to mix-and-match the vaccines, so I decided to try Pfizer and see if I could tolerate it better. That seems to be the case.

I chose not to pair the booster with my annual flu shot, because I wanted to get over whatever side effects I’d have from the former before adding in the latter. Now that I’m over 65, I get the super-duper flu shot (a friend called it “the old geezer shot”), and I need to pace myself. So that’s scheduled for this coming Thursday.

Fortunately, it is super easy to get vaccinated. Both shots are free and readily available at many local pharmacies. One piece of advice: don’t count on a walk-in. I thought that would be possible, given all the reports that there has been no run on the bivalent booster, but found out when I arrived without an appointment at my local CVS that I definitely needed one. The online appointment scheduling is simple and takes only about five minutes.

I hope your experience with the bivalent booster goes well. Please don’t wait. Flu season is upon us here in the Northeast, already intensifying in the southern U.S., and new, wily Omicron variants have also hit our shores. We have the tools and a lot more experience than we did two-and-a-half years ago.

Stay safe out there.

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: Vinzenz Lorenz M

The Nose Knows

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One of the odd and frustrating complexities of my scleroderma is the production of calcium deposits. Typically these grow under my finger tips, at pressure points. And every so often, they rise to the surface—sometimes painfully, sometimes not—until they break through. Their consistency ranges from toothpaste to a pebble. The calcium can ooze out or poke like a pin beneath the skin.

No fun.

maya-1214706-639x424Especially when the calcium forms on the bridge of my nose. This has become a chronic issue for the past dozen years. About every two to three years, I’ll develop a lump of calcium large enough that I have to have it surgically removed in order to avoid the risk of a skin break and infection.

And so it was, a week ago Monday, that I went back to my ENT plastic surgeon to have a lump of calcium removed, once again, from my nose. I used to have a theory that the condition was exacerbated by my glasses (my eyes are far too dry from Sjogren’s Syndrome for contact lenses), and I have gone to great lengths and expense to get only the very lightest weight frames. Certainly these are more comfortable. But after this fourth excision, I’m beginning to think that the bridge of my nose is a little calcium deposit factory, and this is just an inevitable maintenance issue that I’ll face again.

I had felt the calcium lump growing for about a year—not huge, just large enough to poke up and stretch the skin. But our insurance policy was not great, and my specialist was in the second tier, with a big deductible. We couldn’t afford the procedure. Then, thank goodness, Al’s health coverage at work changed for the better (not in small part due to a lot of employee complaints and talk of unionizing). So the first week of January, I called for an appointment. Even though I knew I’d have to heal in cold weather, I couldn’t let it grow any larger without risking a skin break.

Al was able to take the day off and go with me to Boston. After about a half hour wait (during which time a woman sat near us in the busy waiting room and began to play her smartphone music without earphones—and no one in charge said a word), I was called in.

Despite the fact that I had specified what I needed done when I made the appointment (with a referral from my rheumatologist), however, no one seemed to know that I wanted my doc to take the thing out that morning. I made my intentions clear, and we got the ball rolling.

My specialist stepped in to see me, recognizing me right away, even though I haven’t seen him in three years. He checked my nose and started explaining the options, but I stopped him and said I wanted to take care of it now. Then he said, “All right, I’ll have one of my associates take care of you.” I looked at him, a bit stunned, straight in the eye, and said, “I really want you to do it.” So he agreed. I don’t know what was going on with communications there, but thank goodness he’s a good guy and a brilliant surgeon. I absolutely would not trust anyone else.

His resident took care of the local anesthesia. One shot, right where the lump lay. I was actually surprised, because the last time I had this done, I think it took at least two shots, and one was in the nostril, itself. Not a pleasant memory.

Only one problem. As soon as she gave me the shot, I began to shake. My heart started racing. Then I felt a pain in my lower gut, which quickly moved to my lower back. When I closed my eyes and tried to steady my breathing, I could see the light behind my eyelids pulsing with my very rapid heartbeat. When the resident came back in the room (she had stepped out for a few minutes), I asked what was in the shot.

Turns out it was Lidocaine plus epinephrine, a combination I have never had before. (The two are combined to make the Lidocaine “stay in place” and work more effectively.) Fortunately, the side effects passed as quickly as they came—but it definitely threw me. Some people are sensitive, my specialist commented. Yup.

Five minutes later, he had popped out the calcium, a pebble about five millimeters in diameter, and stitched me up. “You have a soft nose again,” he said. I was relieved. With a piece of surgical tape over the incision, I walked out into the waiting room and found Al. I was really glad he was there, because the aftereffects of that shot were still making me feel off kilter.

Anesthesia works through my system very slowly. It took about seven hours before it wore off completely, during which time I tried to sleep, couldn’t, even with a Vicodin, I’m sure because of the epinephrine lingering somehow. I did get to sleep, finally, that night, and was nearly back to normal the next day. By Wednesday, I felt like myself again.

The small incision is almost completely healed, a week later. The stitches are absorbing. I have been able to go without any bandage for 24 hours, even as the temperature has dropped into the teens and we’ve gone from springlike conditions to snow storms over the past seven days. It’s great to have that damn calcium pebble out of my nose.

I made notes so I’ll remember what happened and what to watch out for the next time I deal with this. And whenever I require a local anesthetic, you can be sure I’m going to find out what’s in it, ahead of time. Living with chronic disease means being vigilant, informed and a strong advocate for exactly what you need, when you need it. Nothing less will do.

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: Tamer TATLICI

In the Belly of the Beast

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There’s no such thing as a non-invasive test. Some are just more invasive than others.

Last week I found myself inside a clanging, banging, buzzing, bleeping MRI machine, undergoing a 25-minute diagnostic that was probably unnecessary, one of those just-in-case procedures you occasionally have to endure because one of your specialists needs to validate a hypothesis and define a baseline.

I’d had an MRI once before, at Boston Medical, lying on my back with a pair of headphones, listening to Ray Charles. The procedure was longer, but the music was good enough to distract me from the machine’s clanging, so the time passed relatively quickly.

Not so last week at an outpatient facility near home. First of all, the position was uncomfortable. I had to lie on my stomach, head in a padded masseuse-like cushion, arms forward, another pad pressed against my abdomen, ankles draped over some kind of wedge, like a swimmer frozen in a dead man’s float. Secondly, the music was lousy—a choice between two stations I dislike (pop rock versus easy listening) on headphones with poor reception. So equipped, unable to see around me, with an IV in my arm and a rubber squeeze ball to grasp in case of emergency, I slid backwards into the MRI’s gullet.

Buzzing soon commenced. Through the headphones, I could hear the tech’s voice alerting me that this first scan would take five minutes. BEEEEP. BANG-BANG-BANG-BANG. I could barely hear the music because of all the static in the headphones, let alone all that banging and clanging, and the song wasn’t anything I really wanted to listen to in the first place, but I hung onto the notes so as not to start feeling claustrophobic.

CLANG-CLANG-CLANG-CLANG. The music ended and the announcer started jabbering, followed by a lot of commercials that sounded like gibberish. I tried to figure out how many more of the five minutes were left by counting the number of ads. Finally, a moment of silence inside the machine.

BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. Another series of scans. I did my best to keep breathing without moving anything I wasn’t supposed to move. This was not easy, especially with the pad compressing my diaphragm. I practiced Pilates breathing, expanding the sides of my rib cage. I wondered if either of the techs had ever gone through this procedure. I decided this should be part of every MRI tech’s training.

The tech’s voice in my headphones informed me that she was now going to insert the contrast dye through the IV. I might feel a cool tingling, but if I took a few deep breaths, the sensation would pass. BEEEEEEEEEEP. BANG-BANG-BANG-BANG. Somewhere in the background, I could hear Billy Joel’s “Just the Way You Are.”

I tried to monitor the progression of the slightly cool dye through my veins. I have an allergy to certain contrast dyes, but I had been assured this was very safe. BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. So far, so good. I tried to focus on the barely audible lyrics as the machine moved through a series of five scans, grateful for the brief silences between each cacophonous set.

More commercials. Next up, “I’m Never Gonna Dance Again.” Yuck. The voice in the headphones said this was going to be the last set, a two minute scan. Thank goodness. BLEEP-BLEEP-BLEEP-BLEEP-BLEEP.

All of a sudden, I felt flushed and unable to get a full breath. I tried to calm myself, but my breathing was too shallow. I squeezed the rubber ball several times. The tech and her assistant were both in my headphones, slightly annoyed. This was the final scan, just two minutes left, what was wrong? “I feel like I’m going to faint,” I said, twice. The machine stopped. A door opened. I moved forward. Someone took my hand, probably the assistant. The tech reassured me it couldn’t be a reaction to the dye, I’d had it seven minutes ago and been fine, it was like aspirin, it would just pass through my system. The weird sensation lifted, and I was able to breathe fully again. Back into the belly of the monster.

BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP. Not a procedure for anyone with a propensity for migraines. I told myself it would be over soon and marveled at how anyone in their right mind could think all these decibels should be tolerated for the sake of more medical data points.

At last, blessed peace. The awful radio music ended, too. I could feel myself moving out into the open air of the room. As the tech removed the IV catheter, she noticed my bandaged fingers.

“Are you a nail biter?”

“No, I have scleroderma.”

“Oh.” Silence. She had no clue what I was talking about.

I sat up, slowly, feeling groggy. The assistant brought me a bottle of apple juice. I took a few sips and wondered aloud why the machine was so noisy. The tech explained that it had to do with the various levels of magnetic resonance. Then she added, “A man made it. That’s why it doesn’t work right.”

I was still a little woozy getting dressed, but relieved to slip my wedding ring back in place. Fresh air felt wonderful. I took another sip of juice as I relaxed into my car seat, Symphony Hall playing on my satellite radio, then realized I’d forgotten to ask when the test results would be available. But I didn’t really care. I’d hear soon enough.

Down the street was a car wash. No one was in line. As my Prius drifted gently into the dark, automated cavern, I lay back, listening to Brahms, drinking my juice, and watched the clear, fine spray wash the last traces of late winter’s grime from my windshield.

Photo Credit: digital cat  via Compfight cc

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.

24

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Twenty-four years ago yesterday, I was sitting with my 91-year-old Grandma Elli on her upstairs front porch in Cincinnati, overlooking a tree full of ripe apples. It was the Shabbat before Rosh Hashanah, and we were talking about life. I didn’t know this would be the last time I’d see her before she would die that December of congestive heart failure. And I didn’t know that back in Massachusetts, a fair-haired baby girl with big blue eyes had just arrived, a baby who would transform our world.

Al and I had been trying to adopt an infant for nearly eight months. The previous April, a year-and-a-half earlier, we had proudly announced to our family around the Passover seder table that I was about six weeks pregnant. Within days I began to bleed and had a miscarriage. It took weeks to get over the loss, but I was determined to keep trying.

Over the summer, however, I began to experience a weird sensation in my wrists, like a rubber band stretching whenever I flexed. My rheumatologist called it a friction rub and told me we needed to stop trying to get pregnant. He was concerned that my scleroderma, suspected but not yet confirmed, was getting worse and that I was at risk of kidney failure in the third trimester. I trusted him, but I didn’t want to believe him.

We decided I should get a second opinion. I went to the University of Pittsburgh Medical Center to see a scleroderma expert. She was compassionate but forthright—I was on a dangerous trajectory with scleroderma and needed to go on medication that would cause birth defects if I got pregnant. I came home scared and distraught. But there was no other rational choice except to take the best shot at saving my health.

The High Holidays came and went. Al found me a fuzzy black puppy with a white star on her forehead and white sock paws. We named her Sukki, and she gave me comfort. But I was still depressed by the progress of my disease, which was crippling my hands and causing much fatigue.

One evening that winter, while I was lying on the living room couch, staring at the wallpaper, Al sat down next to me. We should try to adopt, he said. I wasn’t sure. I didn’t know what would be involved. How could we afford it? How would we find a baby? How long would it take? Would I be able to handle being a mother with my scleroderma? I felt like my body was failing me in so many ways, and I was terrified.

In my gut, though, I knew he was right. We began the adoption process shortly after, on Tu B’Shvat, the Jewish New Year of the Trees. Months passed with no leads. When Passover came around again, six months after I’d begun my prescribed course of D-penicillamine, I noticed that creases in my forehead had reappeared. I joked that I was the only 34-year-old woman in the world who was happy to have wrinkles.

Every night and every morning, I’d pray for a baby who needed us as much as we needed her or him. Summer came and went. After my return from Cincinnati, on the High Holidays, we both prayed with all our hearts for a child.

The day after Yom Kippur, a Thursday, I was getting supper ready when the phone rang. It was our social worker calling to tell us that he had found us a baby girl. As I hung up the phone with trembling hands, I heard Al’s car in the drive. I raced out in stocking feet to tell him the news.

The next four days were a blur of friends bringing over everything we could possibly need for our new baby. A crib materialized and a dresser, a changing box, clothing, toys, books, even a potty chair. Al and I took Sukki for a hike in the woods over the weekend and were so excited that we got lost, found our way to a road and hitched a ride from a kind passerby several miles back to our car.

Sixteen-days-old, Mindi arrived in a hand-knit pink sweater and bonnet that Monday, the first day of Sukkot—a festival of ancient harvests and lessons about God’s constancy in our transient existence. The pizza’s in the car, our social worker quipped as we answered the door.

And there she was, our beautiful, mysterious baby girl. We cuddled her and fed her, changed her diaper and laid her down for a nap in our friends’ borrowed white cradle. Al and I looked at each other as she slept and wondered, Is that all she does?

Little did we know.

Among the many things we have learned from Mindi over the years, perhaps the most important is this: Every child, however she becomes yours, is a human being in her own right, not a mini-Me. And this: Adoption is a challenging course. Along with the profound joy of creating a family, it brings the heartache of deep loss and an intense struggle for identity.

I have told Mindi that I am a much better parent because of her. She has forced me to stretch beyond experience, to question and discard pat answers to parenting. Always one step ahead of me, she has taught me to doubt snap judgment, take a step back and trust her to manage for herself.

Soon, she will be returning to her job and friends in Tel Aviv, with plans to come back to the States next fall for graduate school. On this anniversary of September 11, as the saber-rattling grows louder over Iran’s nuclear capacity, I’m trying not to worry. The world is a dangerous place, but we all have to let go of our adult children, ready or not, and believe in them and their ability to thrive on their own.

The Talmud teaches that parents must instruct their children how to swim. Bright, adventurous and resilient, Mindi is a strong swimmer. I’m grateful. I’m incredibly proud of her. And I’m going to miss her very much.

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.

Music of the Spheres

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I woke up around 5:30 one morning this week to the sound of intermittent electronic chirping. At first, I thought it was my husband’s beeper. Occasionally Al, a hospital social worker, is on call for ethics consults.

But the sound was coming from the hallway outside our bedroom. Alas, it was our smoke detector’s low battery alert. Important, yes, but not my favorite way to wake up. So I stumbled out of bed, grabbed our TV remote and shut off the damn thing. (And, yes, made a mental note to replace the battery.)

If only I could do the same for the constant ringing in my ears. I’ve had tinnitus for a couple of decades now, ever since I tried a course of Trilisate to relieve joint pain.

A compound of two salicylates—derived from salicylic acid (which is the basis for aspirin), derived from salicin, the natural analgesic found in weeping willows (which made willow bark one of Hippocrates’ curatives)—this anti-inflammation drug also causes tinnitus in about 10 percent of users.

I was one of the lucky few to have the medication damage the tiny hair cells in the cochlea of each ear, my right worse than my left. The result is a constant ringing that has become more pronounced and annoying in recent years.

The noise has become loud enough that I had begun to worry it was affecting my hearing until, one night, when Al was snoring and I couldn’t sleep, I put a pillow over my head and could still hear him quite clearly plus every little creak in the house, along with the ringing. So, at least for now, that’s one fear allayed.

Lying in bed, trying to get back to sleep after shutting off the chirping smoke alarm, I was instead swamped by the ringing, which (as any one of the millions who live with this condition knows) is always worst when everything around me is quiet.

So, being a writer, I decided to listen to the sound and try to describe it. Our radiators began hissing. Similar, but not quite. It’s a rushing noise, but also a ringing. But not quite a ringing. More like a a very high pitched, constant, tinny tone. But not quite constant. It ebbs and flows within a narrow range.

If it weren’t so annoying, the sound would be etherial. It reminds me of space audio—radio emissions from the planets in our solar system, collected by the passing Voyager and Cassini satellites, and converted to sound. The recordings, made by physicists at the University of Iowa, are fantastic, bizarre, eerie and cool. My ringing best approximates the sounds of a Jovian chorus, without the clicking.

And that’s how I’m trying to deal with my tinnitus. Like my scleroderma, it’s there. I can’t stop it, so as long as I have to live with it, I might as well make the best of it as an otherworldly internal concert—my personal music of the spheres.

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.