Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

cellulitis

Delayed Reaction

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A week ago Friday, I checked an item off my health care to-do list when I got my pneumonia vaccination. For older adults, mine was Pfizer’s Prevnar 20, which stands for Pneumococcal 20-valent conjugate vaccine, in case you’re wondering. Basically, it covers a slew of bacterial strains, and as of current practice standards, I won’t need another pneumonia vax, ever.

It barely hurt, and I only had minor aches in my left shoulder for maybe 48 hours. No big deal.

Meanwhile, I’m still nursing nasty multiple ulcers in my left ring finger that have cost me a nail and considerable discomfort for at least six weeks, now, even as it slowly heals.

Thursday evening, after my shower, I noticed an odd, blotchy rash on my upper left arm. At first, I thought it could be hives, which I occasionally get from taking a shower. But the rash did not clear. In fact, it seemed to be spreading a bit.

Now, I have a history of cellulitis when I get infections in digital ulcers. Haven’t had an episode in quite a while, but this was my immediate concern. If you’ve ever dealt with this kind of superficial skin infection, then you know that it can get very dangerous if left unattended, with the potential, if it gets into the bloodstream, of causing sepsis.

Typically, when I’ve developed cellulitis, it spreads in a thick, red line from the ulcer up my forearm. I once had the experience of watching it spread at a rate of about an inch an hour. That landed me at the infusion clinic of my hospital, getting IV antibiotics.

So, even as this rash was in no way connected to my ulcer, I was still worried—indeed, worried enough to have trouble falling asleep, and rising to check if it was spreading several times. That is, until about 2:30 in the morning. I had traced the outline with an eyeliner pencil about an hour earlier and the rash hadn’t really moved. So I took a minocycline pill, which I always have on hand, and convinced myself to get some sleep. No way I was going to the ER to deal with it unless it seemed aggressive.

When I woke up Friday morning, there was no change in size, though the rash had filled in and was definitely warm. It suddenly occurred to me that this might be a reaction to the pneumonia vaccine. During Covid, I had twice developed a rash in my injected arm from the Moderna vax, though never from Pfizer. But this was a totally different shot. Sure enough, I found a few research articles online about delayed reactions to the Prevnar shots, though it’s quite rare (of course—I always get rare complications).

At 8:00 I called our geriatric practice and explained my concern, that I needed someone to determine if it was cellulitis or the vax reaction. I was prepared to spend half a day at Urgent Care, if necessary. So, here’s why I love our geriatric providers: they make house calls. And, it turns out, that even as our NP was not available, they could send a mobile urgent care team to our home. Which they did.

The team was great, and they confirmed my second hypothesis, that I was reacting to the shot, even as the rash was several inches below the injection site. The solution? Zyrtec. Which I started that day, and the rash is subsiding.

To say I’m grateful is an understatement. Fortunately, after four-plus decades of living with scleroderma, I know enough to know what to watch out for and how to get help. And I’m lucky to live where excellent help is available, right in my own home.

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: Louis Reed

Theory of Relativity

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Just over two weeks ago, we were in Ireland. How can that be? I feel as if a month has passed, already.

IMG_0438It’s so hard to hold onto that transformative sense of being elsewhere, once you’ve re-immersed in your everyday life. We have pictures and stories of our travels, and we’ve been sharing with friends and family, but with each day that passes, the details are a little less sharp. The minutiae of the moment clamor for attention.

Part of the reason the trip seems so distant is that I was in Chicago on business last week. This worked out better than expected, given that a mere seven days separated our European journey from my flying halfway across the U.S. on my own. After we had traveled all over Europe in two weeks, going to Chicago and even switching hotels once in three days was a snap. I was so relaxed about packing and flying that I surprised myself. Usually, I’m stressing about every detail. This time, I hardly did any preparation in advance. And I didn’t have any health complications along the way, thank goodness.

So even if our vacation seems like a long time ago, the travel experience has changed me. I know I can manage a lot of details on the fly. I know I can manage a health flare while far from home. I know I can do a lot of schlepping, get very tired, but recharge and keep going.

All of this is very encouraging. I would love to see more of the world before I really am too frail to travel.

In the days leading up to our Europe vacation, I felt as if I were jumping off a cliff. What if I couldn’t handle it? What if one of us got really sick on our journey? What if we lost our passports or they were stolen? On and on.

I’ve had so many episodes of strange, scleroderma-related health problems–infected ulcers, a resorbing tooth, spontaneous cellulitis–while on short trips not far from home, that I really didn’t know what to expect. The fear of illness in a foreign country has kept me from considering a bigger trip for years.

I prepared as best I could for all contingencies, including buying a good travel insurance policy that covered us for serious health complications. I carried an ample supply of antibiotics, which paid off when I did, indeed, suffer a bout of cellulitis in my right foot at the beginning of our travels. I planned our itinerary to build in opportunities to rest (not enough, but at least I tried).

In the end, I learned that I’m stronger than I thought. And I also discovered that a half-week business trip in one city is easy compared to a two-week vacation in seven. It’s all relative–a matter of experience, testing your limits and finding out what you’re really capable of, as opposed to what you’re afraid you cannot do.

Onward.

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 Shot in the Arm

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There are some advantages to seeing your doctor often. Mainly, you get to know each other as real people. And you get to know the support staff—receptionists, nurses, aides—as real people, too. This helps. A lot.

Last week, I had one of my quarterly visits to my rheumatologist at Boston Medical. It was an 11 o’clock appointment, which, by definition, knocked out at least three hours from my workday—including driving, parking, waiting and the appointment itself, plus whatever other tests he might order.

I was doing fine on the Mass Pike until I got to the Pike Extension closer to the city. Suddenly, traffic slowed to a near halt. I spent many years commuting to Boston and know the patterns pretty well, so it was a surprise to hit a jam in late morning. I called the clinic to let them know I was stuck.

“You have a 15-minute window,” said the voice on the other end, someone unknown to me. “After that, we can’t guarantee your appointment.” I had already been driving over an hour. I tried to explain that I had no control over traffic. She just repeated the company line. I hung up, thoroughly annoyed, and decided that no matter when I finally got there, I’d insist that they check with my doctor and fit me in.

I hustled around more slowdowns and construction, finagled my way through local traffic near the hospital and lucked out with a parking spot on the garage’s fourth level. When I reached the Rheumatology Clinic, slightly short of breath, it was just past 11:15. The two receptionists that I know were there, totally fine with my arrival time. And, as is often the case, my doc was running late, anyway. I settled in with my Kindle and started reading.

About a half-hour later, when my rheumatologist arrived in the exam room, I related my travel woes. He said in the future, not to worry. “I often run late,” he admitted. “If everyone has to wait for me, it’s only fair that I would fit you in.” Thank you, thank you. Not only is he a great diagnostician, he’s a mensch.

When we finished reviewing my latest episode of cellulitis (he laughed when I quipped how it inspired my blog post the week before) and the rest of my status report, I asked if I could get my flu shot. As he left the room, I promised to send him images of my finger ulcers using my new iPhone, the next time I changed my dressings (we agreed it was a great way to save time and wound exposure in the office visit).

A few minutes later, one of the nurses appeared at the door carrying a hypodermic needle and an alcohol swab in a foil packet. “Evelyn, it’s so good to see you!” she said with a laugh. “It’s been such a long time. You look great!”

A big woman, she opened her arms and gave me a huge hug. This is the nurse who handles all medication refills and who did battle with our former insurance company to be sure I was able to continue with a very expensive prescription when the insurer didn’t want to cover it without insisting I go through an invasive procedure. She won.

We caught up a bit, and then she gave me the flu shot—just a slight pinch, no pain. We said our goodbyes, I collected my stuff and left the exam room. As I set my next appointment for February, I commiserated with the secretary, who knows me by sight, about how neither of us wanted to think about the winter to come.

Maybe it was the hug, but my arm barely hurt the next day.

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.

Waiting for Sandy

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Rain drips off the ridge of the bay window outside my home office. Leaves tremble and branches sway. One long, thin lilac branch waves back and forth like a pointing finger. The sky is the color of soaked cotton balls. I can hear no birds, only the patter and plop of rain drops falling off the tree limbs overhanging our roof, and the wind’s sigh.

It’s strange and curious and unnerving, this waiting for Hurricane Sandy, billed as the worst storm to hit the Northeast since the Hurricane of 1938. I wonder where the birds and squirrels go, how they will protect themselves when the gale batters their tree-top homes. We live within the red-lined high wind warning zone in Massachusetts, expecting gust of 40 to 70 miles per hour at some point later today. Maybe overnight. And there will be rain. Lots of rain.

I worry about the trees that sustained so much damage in last year’s freak October snow storm, when the night was filled with the gunshot of cracking branches. Our neighbor’s old Silver Maple toppled into our back yard, blocking our kitchen door and missing the roof by inches.

And I worry about losing power for days. This is my biggest concern. I can’t withstand the cold, even as the weather is mercifully well above freezing this time around. The utility companies have promised speedy, efficient repairs to downed wires. They’re anxious to repair their damaged reputations from last year’s storm that left thousands without power for days and even weeks. We were lucky and provided hot meals and showers for neighbors who went without heat. But will our luck hold again? If everyone loses power to this monster storm, where can we go?

It’s a stark reminder of how control is an illusion—often the way I feel about my health. A week ago Sunday, out of the clear blue, I woke up with cellulitis in my left elbow, just one hour before I was leaving for a two-day business trip to New York. Not knowing how quickly the red, puffy skin infection would spread, I took a gamble on managing with oral antibiotics that I always have on hand, per discussions with my infectious disease specialist, and headed out the door.

For the next 12 hours, on the train, at Penn Station, during meeting breaks and at my host’s home, I kept monitoring the progress of the warm redness, telling myself if worse came to worse, I was at least in a place with a high concentration of excellent ERs. “You know the cost of making a bad call,” warned the ID doc who was covering over the weekend, when I called Sunday night to report that the cellulitis had spread around the side of my elbow. “Yes,” I answered, “it could go septic.”

I promised I would go to an ER if I spiked a fever or if the infection spread any farther and prayed the antibiotics would finally kick in. Somehow, I got to sleep that night and woke to discover that the redness was receding. The rest of my meetings went exceedingly well, and I even had a spare hour to walk the High Line for the first time, under exquisite blue October skies.

That day seems a long time ago, already. Now I’m just sitting here, waiting to see if this mega-storm will be as bad as the forecasts predict, or if it will lose power as it spins over land.

We have no control over these things, of course. Whatever extreme weather we have set in motion with global warming, even if all the nations of the world finally get together and commit to reducing carbon emissions, we will all have to live with for years to come. At least we have excellent weather forecasting, unlike so many caught by surprise when the fatal ’38 Hurricane barreled over Worcester and up the Vermont-New Hampshire border. We’re also blessed with extensive emergency support. But there’s nothing I can do to stop another tree from falling or the wires from coming down. All I can do is stay indoors until the storm passes.

And there’s nothing I can do to prevent another mysterious bout of cellulitis or whatever else my scleroderma throws my way without warning. It just is. All I can do is take care of myself as best I can and not let this disease stop me from living my life fully. From where I sit, there’s no other choice.

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.

The Cruelest Month

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April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.

—T.S. Eliot, The Wasteland

My April started early this season, by a few weeks. With warming weather and spring’s promise have come ulcers and more ulcers—an inexplicable but oft observed trend in medical literature.

No one knows why, in spring, ulcers blossom along with lilacs. Maybe it’s the gravitational pull of the moon. My theory is that my skin expands and contracts as the temperature cycles from cold to warm to cold to warm again, causing it to crack like a concrete sidewalk at the end of winter and form more open sores.

Right now, I have nine ulcers on my fingers: four on the left hand, five on the right. To make matters much worse, an unusual ulcer on the knuckle at the base of my left middle finger got infected last week. The infection bloomed into cellulitis. The back of my hand puffed up and was warm to the touch—unusual for me, with my perennially cold hands—and made grasping painful.

My normal antibiotic regime made no dent within 24 hours. Fortunately, I was able to get in to see my rheumatologist on Friday afternoon (never let an infection go over the weekend—much harder to get medical attention without ending up in the ER), who consulted with an infectious disease specialist, who prescribed Rifampin, which is normally used for treating tuberculosis and to prevent the spread of bacterial meningitis, but is also used, in my case, for treating resistant strains of staphylococcus.

This was a new drug for me, but, thank goodness, it worked. I didn’t have to go on IV antibiotics, which I hate, because my veins are small and roll, making it hard and painful to insert the needle. If I have to stay on IV antibiotics for any length of time, I end up either having to be re-stuck about every three infusions, since my veins give out, or getting a PICC line under my right armpit (the left armpit veins are no good anymore, from past IV episodes), an extremely unpleasant procedure.

So now, thanks to the miracle of a more powerful oral antibiotic, my left hand is almost back to normal again, I’m IV free and feeling better.

Except for the aftermath of yet another frightening episode with infections. On Friday, waiting to see if the antibiotic kicked in, I kept monitoring my left hand to be sure the cellulitis hadn’t spread across my wrist and up my forearm. I had a bout of cellulitis several years ago when I could actually watch the redness move in a swath up my arm at a rate of about a half-inch an hour as I was driving home from work on the Mass Pike, racing to get to the infusion lab. I’ve learned since to catch symptoms early.

But even as I am meticulous with hand care and getting appropriate medical attention, an experience like this always reminds me how vulnerable I am—we all are—to sudden, inexplicable illness, flare-ups, accidents. It leaves me feeling shaken and uneasy for several days, until my body begins to heal and I realize that I’m still quite strong and able, despite the way my scleroderma can muster a stealth attack.

We all walk this earth, not knowing what comes next. Chronic disease just adds to the uncertainty—or perhaps, increases the predictability of uncertainty. If anything teaches that control is an illusion, it’s that.

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.