Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Moving On

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The last time I had a doctor’s appointment, I went without a mask. It was a few days after the Covid public health emergency was lifted in May, and masking in medical settings was no longer required. This felt strange, but liberating. I asked the medical assistant who took my vital signs how it felt to her. After three years of having to mask for work, she said, it was both odd and freeing. She found herself feeling for her mask to be sure it was in place and realizing it wasn’t there.

Don’t get me wrong. I think that masking has been an essential step toward reducing the spread of Covid and has helped to save lives. I’m sure it also kept me safer from other viruses. But I’m glad that we’ve moved on to be able to choose safely, for ourselves and others, when to mask and when it’s no longer necessary. So far, I’ve stayed healthy (knock on wood) despite not masking in a medical setting. I stopped masking in restaurants months ago, and in stores, and even on a long flight home from Germany in March, and still stayed well. Thank goodness.

I also got my second co-valent booster the first week it became available again for seniors. So that certainly helps give me an extra layer of invisible protection. And I remain meticulous about using hand sanitizer after touching public door handles, touch screens at check-out counters, elevator buttons, and using public restrooms. I did that before the pandemic, and I have never stopped. That’s just common sense.

Recently I noticed that Covid is no longer necessarily spelled with a capital C in news stories. I’m not sure if this coincided with the end of the public health emergency. It looks a bit odd, and I’m not quite yet ready to adopt that transition in my own writing. The virus has a long shadow. But perhaps this is just one more way that the pandemic has become endemic, like influenza, which is never capitalized and even has its own nickname, flu.

Covid is actually an abbreviation, already, of its full descriptor, corona virus disease. During the worst of the pandemic, I’d seen it shortened to ‘rona’ in casual texts and social media posts. Someday, perhaps, we’ll check off the annual rona shot on our fall medical to-do lists, along with flu shots.

Whatever you call it and however you spell it, all I can say is, to the best of our knowledge, thank goodness this very long, dark chapter has come to a close. As Dr. Sanjay Gupta wrote recently, while we still need to remain vigilant, now is the time to apply the hard lessons of the past three years, stay home when sick, be proactive about our health, and invest in staying well and living healthfully.

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: Vera Davidova

Turnover

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Last Friday I met my new infectious disease specialist, Dr. A. He’s very knowledgeable and experienced, chief of ID at one of our city’s major hospitals. I’m relieved to have found him as my partner for managing all-too-frequent infections in my digital ulcers, since my former ID specialist, Dr. W, retired about six months ago.

Dr. W and I had an understanding for decades that I would keep a supply of antibiotics on hand, and whenever I felt the tell-tale pain and saw the swelling and redness of an infection, I would start the meds and let him know how I was doing. Finding another experienced specialist who would agree to the same arrangement was not guaranteed, and when Dr. W retired, there was no hand-off to a colleague. So, with some help from my PCP and a number of phone calls, I was able to get a consult with Dr. A. We clicked right away, and I’m very grateful to have him as my new partner in managing this disease.

Transitioning to new physicians has become a theme of the past few years. There’s no guarantee of finding the right match. So far, I’ve been lucky.

First, my long-time rheumatologist here at home retired. He was the one who saw me back in 1985 when my symptoms emerged and was my anchor for many years. He arranged upon his retirement for me to be seen by the rheumatology department chief for our health care provider. Then came my long-time rheumatologist at Boston Medical, a gem, who also arranged for a transition to his successor before he retired. While my relationships with my new rheumatologists are still a work in progress, they are both top notch and personable, which is an essential combination. And the major advantage of the switch has been a fresh review of my medical history and some necessary diagnostics.

Next to retire was our primary care physician, who had been my doc for all the years I’ve lived here, and was Al’s, too, since we’ve been married. This time, there was no transition plan in place. In fact it was downright chaotic for a few months, until we were able to get an NP through our provider’s excellent geriatric care department. She is wonderful, and best of all, the whole practice is based on house calls. Such a pleasure to see her, together, at home, several times a year.

Recently I also had to find a new ENT plastic surgeon, because the calcium deposits that lodge on the bridge of my nose have grown back to the point of needing removal. Last time I had this procedure was five years ago, but I’ve waited until the pandemic passed to take care of it. My prior specialist moved on from Boston Medical at some point during the pandemic, and so I met my new specialist a few weeks ago. He is also head of the department, so I’m good hands with him and his team, especially since the procedure looks to be a bit more complicated this time around. He almost tried to talk me out of it, given how the skin on my nose is not that flexible, but we reached a meeting of the minds and a solution involving a skin graft. So that’s next month.

This kind of turnover is inevitable when you’ve had a chronic disease as long as I have, for more than four decades. Many of my docs were close to my age or just a few years older when we originally met. We’re all getting older. Many of my new specialists are younger than I am, though not all.

But the pandemic has definitely made transitioning from one physician to the next more difficult. Many physicians have burned out from the stress and strain on our medical system. Others seek better pay and a more manageable work-life balance than they can find here in the Northeast, where I’m told that medical salaries lag behind other regions in the country. In the Boston area, GI specialists, in particular, are apparently in short supply.

Right now, I think I’ve rebuilt my team so all bases are covered. It will take more time to build the trusting relationships I had with their predecessors. Here’s hoping they don’t move on for at least the next five years.

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: Gratisography

Greening

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At long last, it finally feels like spring here in Central Massachusetts. Over the weekend, the sun came out, the temperature climbed to 70°F, and all the trees that had been waiting for the signal unfurled their leaves.

We are once again surrounded by green. And so, Al and I went for a hike on Sunday. He took me to a beautiful forested park with trails around a cascading stream. I hope these photos give you the aahhh sensation I felt while hiking. 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.

Chopin to the Rescue

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Last Thursday, I drove two hours in heavy traffic to Beth Israel Deaconess Medical Center in Boston to participate in a three-hour clinical study. As I wrote back in November, not long after I had a heart catheterization stress test, one of the cardiologists asked if I’d be willing to participate in a study to find a non-invasive alternative. I agreed, because the test was very unpleasant. If I could help to spare someone else that ordeal, I was willing.

So, after ignoring my GPS, which led me to the wrong side of the hospital, I finally found the parking garage and headed inside. (If you’ve ever been to the Longwood Avenue complex of medical centers in Boston, you’ll appreciate that this was no easy feat.) A pleasant research associate greeted me and reviewed the study protocol, which I had read in advance, so I knew, approximately, what I was in for: a six-minute walking test to establish my baseline, followed by an ECG, an IV insertion, a blood draw, then being hooked up again to an ECG for a 20 minute MRI, followed by up to 10 minutes peddling a recumbent bicycle, followed by a contrast dye infusion and another 30 minutes in the MRI. Not a cakewalk, but still better than the invasive procedure.

Now, I’m no fan of MRIs, which are loud and claustrophobic, and I was trying not to get anxious, anticipating THE BIKE. Last time I did this, I lasted three minutes before I felt really awful, because my pulmonary pressures skyrocketed. I was hoping that my new medication, more exercise in recent months, and better diaphragmatic breathing would all help.

So I really appreciated it when one of the researchers kindly asked if I’d like some music while in the MRI. I requested classical. “What kind of classical?” she asked. Really? You get a choice? I went for Chopin piano etudes, a favorite, and some of the most soothing music I could think of on the spot.

The walking test was easy. They set up two cones in a hallway of the research patients’ floor, and I kept a steady pace, back and forth, for the full six minutes with no issues. Ever the A student, I was pleased to know I was among the fastest walkers in the study, so far.

Then came the MRI. Lots of equipment to attach and adjustments to make as I lay on the bed that slides into the maw of that noisy monster. And, of course, it took two sticks to get a working IV in my arm, which is always the case. The final step was a set of earplugs to lessen the bangs and beeps, plus the headphones, and adjusting the volume so I could still hear Chopin. I hung onto every note of the beautiful melody as they slid me into the MRI and the study began.

The piano etudes were interrupted every few minutes by a recorded voice that instructed me when to breathe in, breathe out, then hold until I could breathe normally again. Beeeeep-bang-bang-bang-rumble-bang-bang-beep-beeeeep-bang. Ahh, Chopin.

I was glad when they rolled me out of the MRI, until the research tech told me that we weren’t done, yet, because the research software had crashed. Help was on the way. Fortunately, rebooting the computer solved the problem—and we were able to pick up where we left off. “Three million for the research software, but we’re still on a Microsoft platform,” he quipped.

Finally the first phase of MRI scans was completed and they rolled me out again, this time for THE BIKE. No headphones for this phase. I was on my own. I peddled up to the tempo they needed to boost my heart rate and made it through the first two minutes of resistance without a problem. “You’re like a metronome!” said the research tech. “Most people slow down and speed up.” “We aim to please,” I said, focusing on my breathing.

“On a scale of 1 to 10, how difficult is this?” asked another member of the team. I had trouble answering the question as she raised the resistance to the next level. “A 4?” I answered. Honestly, it was hard to assess while I was trying to manage my breathing. After about a minute at that resistance level, I began to feel some mild chest pressure, which I reported. I was able to finish another minute of peddling, and then they ended that part of the process. A good thing, because I could sense that I was going to start tanking soon.

Headphones back on, first dose of contrast dye infused, Chopin playing in my ears, I began to relax again—until the banging started up. At one point, there was some brrp-brrp-brrping that almost drowned out the music for what seemed like an eternity. I began to feel a bit claustrophobic, but at least could feel my legs outside the machine and even, sort-of, see them. The piano notes that I could catch were my buoy.

Finally, after a second infusion of dye and more banging and clanging, I was done. I felt a little shaky when I sat up, with help, but was soon able to walk back to the changing room and get dressed. They got the data they needed, and I survived without that awful shortness-of-breath feeling. I did my bit for medical science, and, I hope, for someone else down the line who can avoid having a mask with a breathing tub clamped to their face and a heart catheter threaded down their neck while peddling THE BIKE.

On my way out of the hospital, I rewarded myself with a glazed doughnut for the drive home. And just as I got back on the Mass Pike, what should be playing on my Sirius XM station? Chopin, of course.

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: Accuray

To Mask or Not to Mask

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Ten days out from my trip to Germany, and I’m feeling fine, thank you. This, despite the fact that I stopped wearing my mask about halfway through the trip, except when on a crowded, stuffy bus or subway. I did not even wear my mask on the eight-hour flight home. I was sitting way in the back, no one around me or even up ahead was sneezing or coughing, and—most relevant—the air in commercial airplanes gets exchanged every two to three minutes, so risks of getting a respiratory virus are actually lower than in a restaurant. (This New York Times article from 2021 gives a helpful visual explanation.)

This is not to say that I was careless. On my flight to Germany, I wore my mask most of the time, to be sure I didn’t kibosh the trip. I also wore it in the airport when in a crowd and in other busy public transit terminals. The key determinant for me was always how many others were around without masks, if they were sneezing or coughing, and if fresh air was in the mix. On commuter rail, for example, when the doors opened every few minutes to let someone on or off, I felt safe without the mask.

I also did a lot of walking during my travels, between four to six miles a day. So, plenty of fresh air and exercise, plus a healthy diet and sound sleep, once I adjusted to the new time zone, all helped me to stay well. (I must also note that my feet were significantly helped by a new discovery, Orthofeet shoes, which are very well designed, comfortable, and not clunky, despite the brand name. Definitely made it possible to go farther than I expected.)

Since I’ve been home, I’ve tried to keep up with daily walks and physical activity. It’s taken much of the past week for my body to fully adjust back to DST here, but I have definitely been catching up on my sleep, at last.

As to masks at home, I’m following the same principles as I did on my trip. I’m keeping up with all of my vaccinations, always carrying hand sanitizer with me and using it whenever I use a touch pad or grab a door handle. (Actually, this has been my practice for years, given my propensity for ulcer infections on my fingers). If I’m in a crowded, enclosed space or around people who are coughing or sneezing, I always have a mask on hand, and if I’m not feeling well, I stay home. I still have a stash of Covid tests, and I’ll certainly test if asked before attending a get-together. But for the most part, thanks to vaccines and good public health practice, I feel safe going maskless most of the time.

That said, I also fully respect anyone’s decision to wear a mask, for their own safety, and I will wear one if someone asks me to, in order to help them feel safe.

Here’s hoping that Covid truly has morphed to an endemic state, and masking becomes merely a matter of personal choice, even for those of us whose immune systems need more tending.

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: cottonbro studio