Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

Too Darn Hot

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This past week here in Massachusetts has been hot. Really hot. And humid. As much as I like warm weather, temps in the 90s and high dew points are not my preference. Low 80s with a light breeze and sunshine is my favorite kind of day. Just right for my Raynaud’s, no need for air conditioning, which is a whole other topic (as in, I hate it unless it’s a sweltering 90+ degree day with high humidity).

As it was, I had to break down and put on one of our heat pumps, which doubles as an air conditioner, or I would not have been able to function. The heat pump in our living room is powerful enough to cool the entire first floor. Later in the day, I would turn on the pumps in two of the upstairs bedrooms to reduce the heat that had risen to the second floor. Our attic fan helped, too.

Overall, pretty effective strategy. But the heat still left me feeling drained.

On Monday, I learned that there was another reason that the weather left me dragging. I had a check-up with my wonderful Boston Medical cardiologist, and in the course of our conversation, he told me that one of my medications, a calcium channel blocker, Diltiazam, which has worked miracles for my heart issues, can also make you feel light-headed in high heat. The drug lowers blood pressure, so if you perspire a lot and don’t drink enough fluids, your BP can drop even further.

I never got to the point of feeling faint, but I definitely felt off during the heat wave (and we have another few days on the way). I’m always drinking seltzer, so I never was really dehydrated. But on one day in particular, when I misjudged the humidity and left windows open overnight, I perspired a lot, which I rarely do, and felt more draggy. So, now I know better.

Which brings me to my main point: In extreme heat, which is becoming more common in summers as our planet warms, it’s really important to know how your meds can affect your body’s ability to regulate itself. Here’s a good overview from Scientific American.

So, Dear Reader, please be informed, stay hydrated, and stay as cool as possible during what promises to be another record hot summer. And, when the temps look daunting, here’s a Broadway cast recording of Too Darn Hot by Cole Porter, from the musical Kiss Me Kate, to help you chill. 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. Please view Privacy Policy here.

Image: Library of Congress

Best Laid Plans Department

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And so, despite my best efforts, I did get Covid last week, after all. In fact, I tested positive on Tuesday afternoon. At first, I thought it was just allergies. All the trees have finally bloomed here, and pollen is in the air.

Just to be sure, though, I took a test. When I first looked at the results, I thought I was still okay, but there was the faintest positive stripe. So I repeated it. Same thing. And by evening, I didn’t really need to doubt it. I was starting to get chills, and my throat was swelling.

By morning, I felt truly rotten. No fever, but all the symptoms I get with a virus, especially severe Raynaud’s and joint aches and headache and sinus congestion. My hands felt like blocks of ice, and it took at least a half hour of huddling under blankets and meditative breathing to regain feeling. I called our primary care nurse practitioner’s office, and by midday I’d gotten the go-ahead to start Paxlovid.

This is the second time I’ve caught Covid. Last time was two summers ago, right before we were supposed to go on vacation, causing a total reorganization of travel plans.

This time, it hit right before my 70th birthday and Passover, which begins tonight. So all plans for both had to be scuttled and rethought.

Thanks to my wonderful daughters and husband, my birthday turned out to be a lovely celebration, despite being sick. The Paxlovid kicked in enough for me to feel somewhat better when I woke on Thursday—and discovered in my email a gift certificate from the family, orchestrated by my daughters, for an Air BnB writing retreat, good for anytime I want to go. In addition, my younger daughter had created a fantastic 70th birthday video with greetings from family and friends, including some people I had lost touch with over the years. It gave me a great boost and is a wonderful keepsake.

Al brought home flowers, and later, he picked up a nice dinner from one of our favorite restaurants to eat at home. So, I felt fully celebrated and grateful—and resilient. Take that, Covid!

We’ve had to upend our Passover plans, because we are just barely clearing the hurdle of having to mask in public (five days after you feel better, have no fever and no symptoms). So we are doing a Zoom seder with our immediate family for the first night, and just me and Al, the second. It’s a small and quiet holiday this year. Given my energy level post Covid, that’s just fine. Cooking for just the two of us on Sunday wiped me out.

The one bright side of this, as my Boston Medical rheumatologist said to me weeks ago when we were discussing pros and cons of a spring Covid booster shot, now that I’ve had the latest variant, most likely JN.1, I’ve gained some protection against it. At least, I sure hope so. This virus is not to be messed with, especially for those of us with compromised immune systems.

And so, Dear Reader, I hope you stay well and avoid Covid. But if it nabs you, be sure to ask for Paxlovid. It significantly reduces risks of the virus and really made a huge difference for me. The most recent research says chances of rebound are slim. It makes your mouth taste bitter, but that’s a small price to pay.

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.

Routine Exam

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Monday afternoon found me in my hometown rheumatologist’s office. I see her twice a year, so that I always have a specialist nearby who knows my history, in case I need help pronto without driving into Boston. She is chair of the rheumatology department for our local health care organization, very thoughtful, compassionate. She also respects my long experience with scleroderma. Mostly, she listens.

We went over the usual check-list: Blood pressure looks good. How are your hands doing? Any prescriptions need refilling? Has anything changed? I reminded her that I needed her to schedule pulmonary function tests at the hospital, because my Boston Medical pulmonologist needs them when I see him in May. She sent in the order.

When she asked about my breathing, I told her I’d had an echocardiogram at Boston Medical a couple of weeks ago. She looked in MyChart. Although my exams from both local and Boston docs are visible in the online medical record, she could not access the Boston test results, something to do with HIPPA regulations.

Fortunately, I was able to get into my BMC account on my phone and pull up the information for her to review (one of those times when an internet search came in very handy). All normal, pulmonary pressures stable. I asked her about medical terms in the report: What is mild tricuspid regurgitation? Nothing to worry about, everyone has some, the echo is very sensitive. Nice to get that explanation in real time.

I filled her in on the mammogram kerfuffle. I asked her if the fact that I have some calcification in small vessels in my left breast is any indicator that more calcinosis in breast tissue could occur. She shook her head. Never seen that in 30 years of practice. I’ll take it.

I shared the good news that after several months of calcium pits emerging from my right thumb, the fifth shard finally emerged on Sunday, and it seems to be done, for now. (When I pulled the last pit out that evening, I showed Al: Look, it’s just a hole! And the hole, per usual, is finally closing on its own.) That must feel a lot better, she said. Yes, definitely.

I told her about my struggle with dry eyes from Sjogren’s and the great help I’m getting from my optometrist at the local college dry eye clinic. When I saw him last week to report back on new eye drops he’d given me (successful) and have him replace the dots on my scleral lenses that indicate how to orient them in each eye, he reminded me that I need to start allergy drops again, that it’s going to be a bad allergy season this year—the likely reason my eyes keep getting goopy.

We discussed the trade-offs of an infusion for osteoporosis (which I have had for years, like my mom and her mother). Despite not having infusions for over a decade, my bone density remains stable. My original rheumatologist, the one who saw me when all my symptoms erupted, had felt the infusions weren’t really necessary if bone density hadn’t changed.

At issue is whether those infusions can exacerbate bone resorption in my teeth. The unanswered/unaswerable question is whether the risk of losing more teeth and getting very expensive implants in a difficult procedure is worse than the risk of bone fracture if I fall. She said she would defer to my dentist. So I need to follow up with him. (And check the latest research about the effectiveness of bisphosphonates in reducing bone fractures. The answer is—it depends. Here’s info from NIH.)

And that was how we left it. It’s a lot to keep track of, but after all these years, it really does feel routine. Thank goodness, I’m holding 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. Please view Privacy Policy here.

Image: Mathew Schwartz

Enter Fall

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It is rainy and chilly and dreary as I write on Monday afternoon. Here in Central Massachusetts, we were fortunate to avoid the worst of Hurricane Lee over the weekend, and the rest of the week looks sunny. But I’m feeling the chill in my hands today, knowing that fall officially begins this Saturday.

Already, the days are notably shorter, the transition even more striking since we came back from the Baltics, where the sun sets later because it’s farther north.

And so, it’s time to make my annual adjustment, mentally and physically, to inevitable colder weather. I should be used to it by now, but I always hate to bid summer adieu. Time for lined leggings and sweaters and wrist-warmers, heavier coats and gloves and hats, more effort to get dressed and out the door.

Sigh.

At least there is fall foliage to look forward to. That, and crisp air, and fewer mosquitoes, and the way that autumn light etches shadows. Even as leaves begin to drop and trees harden off for winter, new buds are forming. My hands will adjust as I remind myself: Only three more months until the pendulum swings and the days grow longer, once 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. Please view Privacy Policy here.

Guinea Pig

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Over the four decades I’ve had scleroderma, I have occasionally participated in research. One of the first studies I signed up for was in the mid-’90s, a trial of medications for Raynaud’s at Boston Medical Center. It was a randomized double-blind study that involved taking a daily pill, recording my experience with Raynaud’s in a journal, and coming to BMC every so often for a check-up with the lead investigator, the late Dr. Joseph Korn. Dr. Korn was responsible for BMC becoming a research center for scleroderma, and his successor, Dr. Robert Simms, became my rheumatologist until his retirement a few years ago.

Which is to say that, even though I’m pretty sure I got the placebo in the Raynaud’s study (no improvement), the long-term benefit was that I ended up being treated by one of the top scleroderma rheumatologists in the U.S. as a result of my participation. I also realized, after driving into Boston on a semi-regular basis, that I could expand my options for work to include that city. Indeed, within about a year, I landed a job as marketing director at a small college in a Boston suburb, a position I held for a dozen years.

Even before the Raynaud’s study, I contributed tissue samples from my placenta after my younger daughter was born to researchers at the University of Pittsburgh. My hands have been photographed and written up in medical journals. For several years, I participated in Grand Rounds at BMC, to help educate young medical students about scleroderma. And I’ve served in a focus group to test intake forms for patients with scleroderma.

I’ve also given blood work for various studies over the years, though I draw the line when it comes to tissue samples from my hands. Given my history with ulcers and long healing times, I don’t want to aggravate my hands more than necessary, even for science.

Most recently, last week I received a call from the cardiology fellow who helped administer my right heart catheter stress test for pulmonary hypertension, to ask if I’d be interested in participating in a study of a non-invasive version of that test. The investigators want to know if a stress test that takes measurements using an MRI would be as accurate as the invasive version that I did. I said I’d be willing to do it, but in a few months. I just need a break from all the measuring. But I do want to help, especially if it means sparing others from the heart cath version, which, as I’ve written here, is no fun.

The other study I’m participating in currently is about cognition (related to aging, as opposed to scleroderma). This one involves playing a video game on an iPad at least once a month for a year. You have to do a variety of tasks that require you to navigate an obstacle course while capturing certain shapes. Conceptually, it’s straightforward, and I do okay. No decline, at least, in my scores. But the problem with the game itself is that it requires manual dexterity that I do not have. So it’s not really measuring my cognition as much as my ability to manipulate my fingers. I’ve mentioned this to the researchers, and they’re aware of the issue. But I’ll continue, anyway.

I write this not to pat myself on the back, but to encourage all of you who are able to take the time, to consider participating in scleroderma research. We’re a relatively small cohort, and whatever information researchers can glean from our experiences will help move us closer to a cure. It’s often easy, and the personal benefits—as I found with the Raynaud’s study— can be significant. If you are not being seen at a research center, as I am, you can find more about studies looking for participants on the Scleroderma Research Foundation website.

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: Bonnie Kittle