Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

The More Things Change

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Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. 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.

Courier Service

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A few weeks ago, I had a series of pulmonary function tests—a routine, annual procedure, just tracking my lungs’ status. I’ve been doing these tests at a local hospital for decades, now, so I continue to do the procedure there to keep a comprehensive record.

Only one problem: the hospital’s electronic medical records do not speak to my providers’ electronic medical records, either here at home or at Boston Medical. So, I have to track down my test results each time, get a printout, and bring them to my Boston Medical pulmonologist for our next appointment.

Now, you might wonder, why not have the tests done at Boston Medical? Their EMR speaks to my local providers’ EMR, and vice versa. And the answer is: I don’t want to have to make yet another trip to Boston for yet another test.

HIPAA regulations do not make this process any easier. As of this PFT appointment, the respiratory tech could not give me any printouts. I signed a bunch of forms to be sure the results got to my local rheumatologist, who had ordered the series for me. I also signed forms to send them to my Boston Medical rheumatologist. But, having learned to be a skeptic about the efficiency of medical systems sharing information with one another, I decided to get a hard copy to bring with me, just in case.

Where to start? Seems like the obvious place would be the hospital’s medical records department. I looked up the number online and placed a call, only to get a message that the number was no longer in service. No info about whom to call or how to get any help. Not encouraging. I contemplated going to the hospital in person, but reconsidered. I was not in the mood to beat my head against the wall.

I knew the results were available, because I had received a message in MyChart to that effect. But when I went to look in my electronic medical record, all I found was a blank page. Aargh.

So I called my local rheumatologist’s office and asked if they could get me a hard copy. Fortunately, I spoke with a very helpful nurse who could see the actual results online (only viewable by the provider, not the patient, for some dumb reason). She put in a request to my rheumatologist to get me a printout.

Lo and behold, a day later, I got a message that the results were waiting for me. All I had to do was drive over to their office and pick them up. I could have had the printout mailed, but I wasn’t sure I’d receive them before my Thursday appointment. And so, on a sunny Monday afternoon, I took time out of a busy day to get my test results, which were, as promised, waiting for me in an envelope with my name on it.

Dealing with a chronic illness requires a lot of managing—not only your own health, but also coordinating all your specialists and keeping track of a ton of information. I’ve been at this for many years, and I take it mostly in stride. But I always wonder: Why does it have to be this complicated? And why can’t I see any test result that is my own when I want to? And why must EMRs from different systems be unable to share my information, even if I authorize it? In 2024?

Sometimes, it feels like yelling into a rain barrel.

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: Lobby Card from the 1925 film “The Pony Express” via Wiki Commons

Spring at Last

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On Sunday, I walked outside without a coat for the first time this year. What a blessing, especially after feeling so cooped up 10 days ago with Covid. It’s been spring on the calendar for more than a month, but this was the first day that really felt springy.

As far as I can tell, I’m done with the virus. Whatever lingering sinus congestion (mild) is now attributable to allergies (the downside of spring). When I went for a routine pulmonary function test on Friday, at first the respiratory tech was not sure if she could administer it to me, given my recent Covid experience. But fortunately she was able to check with the hospital’s chief of infectious diseases, who agreed with my expectation that, given revised CDC protocols, I was free and clear.

(In case you’re not aware, the new guidance basically says that after 24 hours free of fever without OTC meds and no symptoms, you can go out masked. After five days of masking, you no longer need the mask, which is where I was on Friday, eight days from no symptoms, thanks to Paxlovid.)

I completed the test, which is never easy at this point, but the good news was that my diffusion rate (not stellar) had not really changed—which has been the case for several years now. So that was encouraging.

And a relief after my other health debacle last week—skillfully scratching my cornea in my right eye on Thursday when I was putting in my scleral lenses. I wasn’t sure, at first, why my eye was bothering me with the lens in place, because it bathes my eye in saline. But once I removed it, my eye continued to smart, and going outside in bright sunshine was truly uncomfortable.

Don’t try driving with a scratched cornea. I did okay, but my eye was tearing and I could barely keep it open. Bad idea. Very bad idea. Back home, after flushing my eye with drops, I used some eye gel and covered my eye with gauze and paper tape for several hours, which made it tolerable.

Fortunately, on Friday, before the PFT, I saw a specialist at the local college eye clinic, who assessed it and thought I was on the mend, though he was prepared to do an emergency debridement if need be. Thank goodness that wasn’t necessary. And I was fine by the weekend.

So, all the more reason to be glad to walk outside without a coat or a jacket or even a sweater on Sunday. No more Covid. No more eye pain. Just sun and flowers and blooming buds on our new cherry tree. A good way to begin a new week.

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.

Snow Day

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On Sunday we had our first big snow of the season, 15.5 inches, officially. Thankfully, the power stayed on despite the heavy, wet snow, although the pole that holds our bird feeder snapped under the weight. Al shoveled our drive and walkway three times, more than earning a good night’s sleep. I clomped through deep snow in our backyard to rescue the feeder and hang it by the back deck, so the birds could still find some food in the storm. Inside, our home stayed warm and cozy, as the world around us slowed down.

I always love this kind of snow, early in winter, before it turns grubby and sloppy and monotonous. The transformation is stunning. Snow outlines lacy tree branches, drags down evergreen boughs, and covers roofs like thick layers of buttercream frosting. Side roads stay white, even after plowing, with high borders lining both sides. Only a few cars venture out, and no planes drone overhead. Quiet reigns.

On Monday afternoon, I bundled up in a long sweater under my down coat, snow boots, wool hat, warm mittens, and sunglasses, and set out to see how the neighborhood had changed.

School was canceled to give the city time to clean up after the weekend storm, but I only saw one dad pulling two of his kids on a red plastic sled, while the other two walked alongside. One of the kids on the sled, his cheeks bright pink, licked a huge ball of snow. I used to love that wintry treat, too, when I his age. Also making snowmen, but so far, none to be seen.

Elsewhere, a few neighbors were shoveling their drives or brushing off cars. Most folks had, like Al, done the main clearing on Sunday. You could tell who had snow blowers by the wide paths along sidewalks that were already melted down to pavement. An icicle shattered on someone’s front steps. Dollops of snow, like whipped cream, clung to branches. Snow covered half of a neighbor’s roof, while the other half had melted to reveal an array of black solar panels.

Aside from enjoying the scenery, the best part of my walk was savoring the moist air that eased my winter-indoors-too-dry nose and eyes, and the fact that it was warm enough to walk with my mittened hands outside my pockets for the whole mile-and-a-quarter route. The air smelled fresh and clean. My head was much clearer when I got home. As I wrote this post, I could hear a red-tailed hawk calling somewhere nearby.

All of this will wash away by mid-week, in another storm, but rain this time. So, here’s to living in the present moment and enjoying all the beauty that surrounds us, each day. You only have to look to find it.

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 Stitches

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It’s been five years since I last had calcium deposits removed from the bridge of my nose, the fifth time I’ve endured this procedure. Usually, I take care of this annoying issue about every three years, but the pandemic put that on hold this time around—which ultimately meant that the calcinosis got worse.

Originally, I thought the problem was caused by the weight of my glasses. I get calcinosis in my fingers at pressure points, so it made sense. But I switched from wire frames to very lightweight Silhouettes years ago, and it has not solved the problem.

No one really knows why scleroderma can cause this build-up of calcium in unwanted places. My theory is that, regardless of how thoroughly my ENT plastic surgeons have tried to remove the calcium growths from my nasal bone, a seed remains that grows more calcium crystals over several years. They always biopsy what they remove, and it always (thank goodness) is benign. In any case, once it gets big enough, it becomes unsightly and increasing uncomfortable, stretching skin that is no longer very elastic.

This spring I met my new surgeon, Dr. E., who is chief of Otolaryngology at Boston Medical (his predecessor had done the last three extractions). I liked him and his team immediately. He is thoughtful and conservative about performing a procedure that is either unnecessary or has low potential for success. In fact, he was at first reluctant to take me on, given how fragile the skin on my nose has become, but we came to a meeting of the minds, with a plan to do a skin graft if necessary to close the wound.

And that is what he and his resident did last Wednesday. I’d had to postpone the procedure twice over the summer, given unexpected schedule conflicts. During that delay the calcium had pushed through the skin, so I was managing an open wound and doing my best to avoid infection until we could finally take care of it.

Nonetheless, I was not looking forward to the procedure. Getting Lidocaine shots in your face is no picnic, and neither is having the bridge of your nose cut open and calcium deposits scraped out of bone. Then there was the added complication of the skin graft, which they took from below my left ear. And sewing me back together.

I’ve learned from past experience that I do not do well with Lidocaine mixed with epinephrine, which is a preferred concoction because it limits bleeding. So, instead, with plain Lidocaine they had to use a cauterizer, which, even with local anesthesia, feels like pins and needles, and sometimes like tiny darts. And it smells like burnt roast, which is, of course, essentially what’s happening.

This all took over an hour. I did my best to keep breathing evenly through the process. Some music from the High Holidays was a welcome ear worm. In addition to suturing the graft, they stitched a rectangular piece of gauze, called a “bumper,” on top of the graft to hold it in place for a week. That comes off, I sincerely hope, tomorrow. Between the stitches under my left ear and the bumper, I looked a bit like Frankenstein’s monster when they let me see my face in a mirror.

“Can I have something to cover it?” I asked.

“What did you have in mind?” asked the resident.

“A bandage?” It seemed rather obvious. His concern was that it not pull at the bumper to dislodge it in any way, but there was no way I was going to walk around with a piece of bloody gauze stitched to my nose for a week. So he found a light blue bandage, which I later replaced with one of my good cloth bandages, and I have been carefully tending it since. I also started antibiotics the day of the procedure to avoid infection. Pain has been easily managed with OTC meds.

So, this has been the every-few-years routine. Except, Dr. E told me when he finished, there’s not a lot of bone left where the calcinosis has repeatedly invaded. He was clear that this is the last time he would do such an extraction. If it grows back, which it most likely will, then we’re talking rhinoplasty. “Well,” I quipped, “at least I have a lot of nose to work with.”

And that is where I find myself after Extraction #5. It’s a lot to process. If the calcinosis re-emerges in a year or so, I may not wait until it begins to form a noticeable bump to undertake the inevitable. I’ll be 70 next April, and if I need major nose surgery, it’s better to do it sooner than later. In the meantime, I’m glad this round is done. And the immediate benefit: I can breathe 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: Anne Nygård