Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sjogren's syndrome

Sounds of Silence

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I should be over my rotten cold by now. It’s been more than a week, for crying out loud! For those of you who read last week’s entry, I’m happy to report that my childhood friend was happy to get together for a rare Boston visit, despite my emerging symptoms. But by Thursday, I tanked. Not only was I sneezing and coughing. I lost my voice.

The timing couldn’t have been worse. We had a big weekend, celebrating one of my brother-in-law’s 70th birthday, with family visiting from all over the country. And I wanted to be there, and I could not just sit there. So I whispered and croaked through conversations. We hosted my other brother-in-law and one of his daughters as house guests, and both Mindi and Emily were home, too. It was great. Except I really shouldn’t have been using my voice, and I probably set myself back several days.

So now I’m doing my best to keep silent. This is not easy for a woman who is very verbal. On the one hand, it’s been a blessing to have a quiet house to work in so far this week. I can express myself via email and text messages and writing for clients, as well as through my own creative writing.

On the other hand, I can’t talk on the phone with anyone or conduct a meeting or get together with a friend or have a simple conversation with Al. Every time I speak, he tells me (with more than a hint of pleasure) that I need to rest my voice. He’s right, of course. There is no way to heal laryngitis other than silence. Even whispering is damaging (as Emily informed me via an article from Scientific American).

So over dinner Monday night, I wrote Al notes on a yellow pad and he spoke in response. Interesting way to communicate—totally different rhythm. At least I didn’t have to repeat myself. I wish I knew sign language.

I’m experiencing silence at another level, as well, because my left ear is blocked up. Even as my sinuses are finally clearing, my ear is not, yet. So external sounds like music on the radio are a bit muffled, although certain soft noises are quite clear (a dripping faucet, crinkling paper). And eating or brushing my teeth is amplified—as well as my tinitus. The ringing is really loud.

Scleroderma adds a layer of complexity, of course. Since I have Sjogren’s syndrome, I have to think very carefully about how to use decongestants, trading off the boomerang risks of nasal sprays with the discomfort of making dry mouth worse at night. Too much oral decongestant sets off my Raynaud’s. Adhesive nasal strips at night help my breathing but can irritate the delicate skin on my nose. Most of all, I need to do whatever is necessary to get a good night’s sleep. On and on it goes. Hard to be patient.

Fortunately (I certainly hope), my voice and hearing loss are transitory. But it surely makes me appreciate the challenges that those who live with permanent speech or hearing impairments have to deal with every day. I’m also very grateful to be able to work for myself at home and not lose income because I can’t report to an office setting when I feel this way.

Okay, enough complaining. Thanks for listening, Dear Reader, and may you avoid a rotten spring cold of your own. Be well.

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: David Di Biase

Turtling

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I wish I could just roll out of bed and get ready for the day in fifteen minutes. Of course, this has been an impossibility for the better part of thirty years that I’ve had scleroderma. But for whatever reason, lately, I’ve been getting more impatient with the amount of time it takes me to get up in the morning.

box-turtle-1409099-640x480Maybe it’s the tease of spring in the air, or the fact that I’m so ready for longer days and shorter nights (at least Daylight Savings Time starts this Sunday).

Or maybe it’s the fact that I have seven digital ulcers right now, which drags out my morning routine.

In any case, there seems no way around the fact that I have to plan at least an-hour-and-a-half, and sometimes two hours, just to get ready for the day.

It starts when my alarm goes off. I don’t wake easily, no matter how well I’ve slept. So I have to plan for a half-hour from the time I set my alarm to the time I actually need to get out of bed, just to give my brain enough time to come to.

After the first of far too many trips to the bathroom (my internal plumbing needs time to wake up, too), I make the bed. It’s how I start moving and stretching and setting everything in order while I clear my mind for the day ahead.

Next I have to wash my tear ducts, first with warm water and then diluted baby shampoo. This is essential so my tears don’t get blocked during the day, a complication of Sjogren’s Syndrome, a secondary autoimmune disease that can accompany scleroderma. It always feels good, and washing my face with warm water followed by skin moisturizer also relaxes my facial skin. (I used to shower in the morning, but it added even more time onto my routine, so now I save that for evening.)

After my eyes are done comes the longest step—hand maintenance:

  1. Remove overnight bandages from my fingers and wash my hands and digital ulcers thoroughly.
  2. Wipe away any adhesive residue with baby oil and wash hands again.
  3. Swipe my fingers with an alcohol wipe. I also clean any mushy ulcers with a dab of hydrogen peroxide.
  4. Prepare all my bandages and cut pieces of absorbant calcium algenate silver dressing to size.
  5. Bandage fingers. Each ulcer takes three layers: Aquaphor ointment, dressing and bandage on top.

Sometimes I’ll do this in silence, as a meditation; other times, I’ll listen to music. Lately, I’ve been reading or listening to election coverage on my iPad while I take care of my fingers. The whole process of bandaging my ulcers takes about a half-hour.

Once I’ve cleaned up all the bandage wrappers and reordered the basket that holds my hand supplies, I take my medications and eye drops. Then I brush my teeth with prescription tartar control toothpaste, an hour before I eat (another maintenance step recommended by my dentist, related both to Sjogren’s issues and trying to hold onto my teeth as long as possible despite root resorption from scleroderma).

Then it’s time for a ten-minute series of stretches that help me to work out any kinks from the night and limber up for the day. Sometimes I’ll listen to music, sometimes not. I try to sit and meditate for a few minutes at the end of my routine, to get centered.

Now it’s finally time to get dressed and put on my makeup, comb my hair, clean my glasses and finish up. This includes using ammonium lactate cream on my feet before I put on socks, to protect my skin from abrasions. The amount of time involved depends on whether I’m just wearing relaxed clothes for work in my home office or dressing up to go to appointments. Skirts or dresses with stockings take longer to put on than a pair of pants and a top. Jewelry can be tricky, since it requires more coordination; I’ve become a scarf aficionado because scarves are easy to put on, colorful and warm.

Downstairs in the kitchen, while heating water for tea, I use a sinus rinse in the adjoining bathroom—another step in Sjogren’s maintenance. And after breakfast, I take my Ibuprofen, for managing joint pain, with some yogurt, which helps my GI tract function better.

It’s a lot to do, a lot to remember. I have my routine worked out as best I can. I wish it weren’t so complicated and often tedious. Sometimes I wonder how I’ll be able to manage all these tasks when I’m older and frailer and need help. Other times I wonder if I’d actually be able to save time if I had some help. But being able to take care of my own needs remains my priority for as long as possible.

So, I keep on plugging. Every morning, I feel like a turtle. Slow and steady, slow and steady.

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: Bill Sarver

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

Orange Moon

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With August now behind us, signs of fall are everywhere. On recent walks I’ve noticed that our neighbor’s sugar maple is just beginning to shed a few leaves. Nights are cooler. It’s already getting dark by 7:30.

photoBut I’m not quite ready to let go of summer. So it was a gift on Sunday—a beautiful, sunny, warm day—that Al and I made it to one of our favorite beaches on Block Island, just off the Rhode Island coast.

As a child, I loved to swim in the ocean. Our family would vacation on Cape Cod, and I’d always beg to go to Nauset Beach, part of the National Seashore on the Cape’s eastern coast. There I would play in the waves until I turned blue and my teeth chattered. Nothing could stop me from swimming and body surfing.

Decades later, I still love the ocean, but it’s been many years since I could get in the water. Most of the time, it’s simply too cold and not healthy, given my Raynaud’s. But even when the water is warmer (yesterday at Block Island it was 73ºF, pretty comfortable for the Atlantic up here), I can’t risk immersing my finger ulcers in the sea. Too high a chance of infection. One year, when the girls were young, I tried fastening latex gloves around my wrists with duct tape so I could swim, but the water still seeped in.

So I’ve learned to appreciate the ocean in other ways. While Al swam yesterday, I finished reading a novel. We took a long walk up the beach, examining pebbles and rocks, searching for sea glass. I dipped my toes in the water. I took some pictures. I listened to the mesmerizing sound of the waves. And I breathed in the wonderful moist air, which does wonders for my too-dry nose and scarred lungs.

The water is an endless source of fascination, ever changing. Then there are all the birds to watch. One particularly bold—or indifferent—white-and-gray herring gull strutted past me as I read, its yellow eye scanning the sand for leftovers, close enough for me to touch it if I’d dared. (I didn’t.)

As the afternoon shadows grew long, I bundled up in the various layers I’d brought—sweater, sweatshirt, blanket, hat. We left the beach, reluctantly, around 5:30, and walked back into town to find a place to eat dinner. It was still warm enough, away from the shore breeze, to dine outside.

Later, on the ferry back to the mainland, we sat on the top deck and watched the dark shapes of the island’s dunes slip by in the night. Even with the breeze created by the ferry’s forward motion, I was able to stay up top and enjoy the stars. As our boat neared Point Judith, we turned around to see the nearly full moon high over the horizon, casting a glistening shadow across the water. It was huge and orange, the color of summer sunsets and fall harvests.

I couldn’t have asked for a better ending to a great summer.

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.

Fine Tuning

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During this past week, amidst so much bad news—the spread of Ebola in West Africa, the sudden eruption of Japan’s Mount Ontake that killed dozens of innocent hikers, the escalation of air strikes against ISIS in Syria, wildfires on the West Coast and more—I have been singing.

I highly recommend this as an antidote to scary headlines and other depressing thoughts.

In particular, I sang alto in a quartet accompanying our cantor and choir for Rosh Hashanah last Thursday and Friday. We’ll sing again this coming weekend, when Shabbat coincides with Yom Kippur. So we have another rehearsal this Thursday night.

This is a good thing. It’s wonderful to have the beautiful melodies of the High Holiday liturgy circling around in my head, blocking out all the bad stuff.

Services were lovely and uplifting, but it took quite a few rehearsals for me to feel really good about singing again. It’s been at least 10 years since I participated in a High Holiday choir, and I’ve never been part of the quartet. So it was a bit of a shock when we began rehearsals about six weeks ago to realize that I had gotten quite rusty. Despite more than a decade of playing instruments and singing in choirs, when I looked at the sheet music, I could not recall the names of all the notes.

Understand that I played violin for 11 years and was concert mistress in my high school orchestra.

What was happening to my brain? It actually scared me. Early signs of dementia? Age? Fatigue? Some crazy aspect of scleroderma? I didn’t know.

With practice, thank goodness, the notes came back, and by our second rehearsal, I began to regain my ability to sight-read.

A second challenge, however, was tied to scleroderma and its nasty partner, Sjögren’s Syndrome. Although I can still vocalize well, my range is more limited than in the past (I used to be able to sing second soprano as well as alto), and sometimes the notes come out warbled or off by a half-step, because my mouth is dry and I can’t always control my swallowing or how my throat opens.

I figured out how to compensate for some of this by remembering to breathe from my diaphragm, rather than straining my throat to sing louder. But I do have limits. I need to breathe more often, breaking phrases, because my lungs just won’t hold enough air. And if the group goes flat, I cannot hit the low G. Impossible.

I was feeling a bit awkward about all this, wanting to hold my own in the quartet. But then I realized that I had better fill in people, so they would understand and I could do my best for the group. Both the tenor and bass are physicians, and all are friends, so when I took the leap and explained about my health-related issues, everyone was quite supportive. This was a relief. I no longer felt self-conscious, and I certainly enjoyed singing all the more.

We received many compliments after services, how our voices enhanced the experience for the congregation. And we loved singing together. Once we learned the music, we enjoyed the added, serendipitous benefit that our four voices have natural resonance. Truly a delight to harmonize.

So I’m looking forward to our Thursday night rehearsal and to singing once again this weekend. And I hope our quartet will find more opportunities to sing together. The world is overflowing with bad news, and I don’t want to lose those notes 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.