Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

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.

Something Completely Different

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The sun is bright overhead as I write on Monday afternoon, a few hours before the solar eclipse is set to begin here in Central Massachusetts. We’re expecting that the moon will block about 90 percent of the sun at 3:28 p.m. I have my two pieces of cardboard to create a camera obscura, a pinhole in one piece through which I can project the eclipse’s image onto the other, so as not to fry my retinas.

On a day of a rare celestial phenomenon, it seems all the more appropriate to break from my routine here and share some good news that has nothing to do with scleroderma. I’ve occasionally menioned on this blog about writing my yet-to-be-published work of historical fiction, Line of Flight, set during the First World War. It’s the story of a mother’s journey to find her estranged daughter, who has run off to France with her beau to volunteer for the French ambulance corps. The good news: within the past few weeks, two excerpts from Line of Flight have published on two separate online literary journals.

And so, in an act of shameless self-promotion—and if you’d like to read something that will take your mind off this nasty disease and related medical concerns, or any other stress in your life—I share a few links:

  • The opening of Line of Flight appears in the April 2024 edition of Embark, which presents openings of ten unpublished novels, twice a year. This happens to be their 20th issue, and I’m in good company. You can read my novel’s opening here.
  • A chapter called “The Sinking” is in the spring 2024 edition of The Writing Disorder, an aptly named literary journal for those of us afflicted by this form of art. The action takes place on the fated last voyage of the Lusitania on May 7, 1915. Read it here.
  • I’ve started a Substack newsletter, History Making, that digs into lessons learned from researching and writing historical fiction, as well as other works of historical fiction that I admire, the long and winding road to publication, and related topics. I’m publishing a post twice a month, and subscriptions are free. So, if you’re curious about the writer’s life and this genre of fiction, you can find it all here.

I said none of this has anything to do with my scleroderma—but that’s actually not quite true. When I was growing up, my hands were extremely dexterous. I could make any kind of art or craft, and I played numerous musical instruments. Once, when I was perhaps ten years old, I recall lying in bed and thinking about what it would be like to lose one of my senses. I decided I would never want to lose the touch of my gifted hands.

That was not to be. But I have realized over the decades of dealing with this disease that writing is my art form, my way of creating images and making music. It took me eight years and twelve drafts to get my manuscript to the point where I feel ready to seek publication. And I’ve been seeking an agent and/or publisher for the past two. That involves a lot of patience and persistence and a refusal to give up—all skills I’ve honed through living with scleroderma.

So, getting this far with my novel is a major milestone, indirectly inspired by managing a complex and chronic disease. And, with any luck, my manuscript will get into an enthusiastic publisher’s hands sooner than the next total eclipse of the sun.

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: Jongsun Lee

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

On Getting Older

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In just over a month, I will turn 70. That number doesn’t feel so old to me anymore. In fact, it feels about right.

There’s an old saying that you’re as young as you feel. Can’t say I feel young—at least, not physically. My body has been aging prematurely since I developed scleroderma in my late twenties. In some ways, I don’t really know what it’s like to be thirty or forty, or even fifty, since I was always ahead of the aging curve. I’ve been living for decades with aches and stiffness and body parts that don’t work and a sense of physical vulnerability that normally wouldn’t arise until late middle age. I used to envy friends who were healthy and energetic when I couldn’t be. I wondered what that would feel like.

Not anymore. Everyone’s caught up. Meanwhile, my decades of experience with premature aging have made the onset of the normal range of physical limitation that come with this time of life just another blip. Aches and pains when I wake up or rise after sitting for a while. Check. Need to manage my energy. Check. Lots of specialists appointments. Check. Need to manage multiple meds. Check. Harder to walk than before. Check. Eyes too dry and tire more easily. Check. Hands giving me problems, hips, feet, knees. Check, check, check, check.

It adds up, and I certainly understand how distressing it is when all this starts to happen, whatever your age. But I never expected scleroderma to give me an advantage. It has forced me to learn how to pay attention to what ails me, problem solve, adapt, get proper medical attention, manage my health care, and most importantly, focus on what I can do rather than on what I can’t. After forty-plus years of living with it all, turning 70 doesn’t really seem like a big deal.

In fact, it feels like an accomplishment. And I’m looking forward to 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.

Image: Volodymyr Hryshchenko

 

The Pits

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Over the weekend, I pulled yet another calcium pit out of the inside joint of my right thumb. It is the third tiny shard that has emerged in the past month-plus. And although I’m not certain, it feels like another one is surfacing.

This makes grasping objects complicated. These tiny charcoal-gray bits of calcium are quite sharp. The slightest pressure, as they work their way out of my skin, is quite painful. And there is nothing to be done but wait until enough is showing that I can grasp it with a pair of tweezers. Not a fun procedure.

Several years ago, I discussed this with my hand surgeon. We looked at X-rays that revealed chains of calcium pits in each of my thumbs that run the length of both digits. He advised against trying to remove them, because of the collateral damage it would cause, but offered to extract one if it became too painful and difficult for my to deal with on my own. The one time I actually scheduled an appointment with him, the offender popped out on its own, which was a relief.

This whole issue is complicated by the fact that I can’t turn my hand around enough to see the opening in my thumb. Not enough rotation in my wrist. So I rely on a mirror, but that’s tricky, too.

No one knows know why these calcium deposits form in scleroderma. There is at present no treatment, only remedial steps to ease the discomfort. According to the Scleroderma Research Foundation, increased blood flow to extremities may help, and lesions may respond to antacids, bisphosphonates, or calcium channel-blockers. But there is no cure.

So, my main goal is to protect my thumb as best I can and keep it clean to avoid an infection. As I type, I am experimenting with wrapping my bandaged thumb in Coban, which is a self-adhering mesh tape that provides some extra padding. Not sure if it’s helping the hole in my thumb, but it feels a bit better when I strike the space bar on my computer—a good thing, because calcinosis often forms at pressure points, and I think another spot may be forming where my thumb hits the keyboard.

Basically, it’s a damn nuisance. Nothing to do but wait it out.

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.