Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hand surgery

600

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There’s something to be said for persistence. Or maybe just a well-honed habit. Whatever the reason, this is my 600th post on Living With Scleroderma. As of January, I will have been writing this blog for 12 years.

My body has aged and changed since that first post. Most notably, my hands required serious revision surgeries in 2017 and a long recovery. I developed Type II Pulmonary Hypertension in recent years (though I probably have had it, undiagnosed, for much longer). My mind is not as supple as it was when I started this project. My eyes require considerable tending for Sjogren’s dryness. I drop stuff too often. I need more sleep to function. And my hair is certainly grayer. Regardless, the fact that I remain healthy enough to keep writing is a profound blessing.

Here’s what I value about this blog: By giving voice to my experiences with this complex disease, I’ve become much more grounded. I no longer feel embarrassed when someone asks about my odd looking hands or stares at them. I no longer shy from talking about scleroderma with others. I no longer feel ashamed or awkward about it.

The other piece that I value highly: Hearing from you, Dear Reader, and how my weekly musings have helped you in your own life, with or without this disease. That’s the real reason I keep writing.

And so, my best wishes to you and yours for good health and joy this holiday season. That’s something we all need in the coming year. 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: Daniel Lloyd Blunk-Fernández

On Managing Pain

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About six years ago, I developed deep, intransigent ulcers on five fingers that eventually caused irreversible damage to both hands. It was quite an odyssey, which involved two hand surgeries and 60 dives in a hyperbaric oxygen (HBO) chamber to heal. My 2017 account of the saga begins here.

I was in severe pain as my hands literally fell apart, which I was able to manage partly with medication. But I also used a meditation routine that I found on Headspace to help. The process involves focusing on sensations just beyond the locus of pain and gradually learning to isolate the specific spot that is causing such discomfort. It remains an important lesson in how pain generalizes, can be deceptive, and is exacerbated by fear and stress.

Surgery and the HBO therapy resolved both the acute and chronic pain issues, but perhaps the strangest outcome of all this was some phantom pain in my right middle finger. As part of the surgery, the top joint was amputated. But I still had sensations that hovered in the air where that fingertip used to be. It wasn’t pain, so much as a weird phantom itching. I would rub the blunted end of my middle finger, but it wouldn’t stop the itching entirely. It actually has taken all this time for that phantom discomfort to now be a very rare occurrence, as my brain has rewired to understand how my finger has permanently changed shape.

I share this because I recently listened to a fascinating podcast about pain management that explains my experience. In an interview with Ezra Klein, Dr. Rachel Zoffness, a pain psychologist at the University of California at San Francisco’s school of medicine, discusses the complex interactions between mind, body, and social cues that create the sensation of pain. She is very clear that pain is our body’s warning system of danger and physical damage, but that pain is also a function of our brain’s map of the body, and that the brain does not always truly know when danger is no longer present. This can be a significant factor, particularly, in managing chronic pain.

Pain management is a skill set for living with scleroderma, certainly, but also for life. So, here is the interview and a transcript. I hope you find it as illuminating as I did. 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:  Santiago Ramón y Cajal nerve cells ca. 1900

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

Unnecessary Procedures

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For well over a year, I’ve had a piece of grey calcium protruding from the pad of my right thumb. As I wrote back in February, I finally saw my hand surgeon and worked out a plan for him to remove it—the challenge being that it’s only the tip of a long chain of calcium that runs down the entire thumb. It gets in the way, hurts when I bump it, and generally makes me drop things.

Surgery was originally scheduled for this spring, but, of course, the pandemic put that plan on hold. I got a call at the end of May, as the hand surgeon’s office began to reopen, to see if I wanted to reschedule for June, but I declined. It just felt too soon—a good thing, as it turned out, because I got an infection in the left thumb that has taken weeks to clear, and I know he wouldn’t have operated under that circumstance, even if the opposite thumb was the problem.

The situation in the past few weeks has gotten really uncomfortable. With the clearing infection on the left and protruding calcium on the right, I was having greater and greater difficulty doing basic tasks. I had a note in my calendar to call the hand surgeon’s office this week and was now ready to get on his schedule as soon as possible.

Then, Sunday night, as I was changing clothes to get ready for bed, I felt a sharp twinge in my right thumb. Then I noticed some blood on my nightclothes. Sure enough, that nasty chunk of calcium had finally, finally, broken off of its own accord. It left a hole in my thumb, about an eighth of an inch deep. The tip of the rest of the calcium chain was barely visible and far enough beneath the surface to remain inoffensive, for now.

I was thrilled. No more need for surgery, no more risk of exposure in a medical setting to infections or Corona, regardless of precautions. From long experience, I knew the hole would quickly close up on its own. So I rinsed it with peroxide, bandaged it with antibacterial ointment, and went to bed.

By Monday morning, it was already half healed. Warm weather certainly helps. Best of all, I can finally use my right thumb again.

This is not to say that, if I’d had no relief, I wouldn’t have gone ahead with the procedure. But our bodies do have a way of healing themselves. I kept hoping this would happen on its own, which is why I took so long to see my hand surgeon in the first place. As if to drive the point home, in Monday morning’s New York Times was this article about how people who have had elective procedures postponed during the pandemic are actually staying healthier than expected.

Complex trade-offs. Grateful that the scale of options swung in favor of non-invasive, this time.

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: Roman Kraft

Chain of Command

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For about a year, now, I’ve had a pit of calcium sticking out of the pad of my right thumb. It looks like a very small, gray pebble, but it will not budge. If I press on it or accidentally bang it, it smarts. It’s also an open wound that I have to tend very carefully to avoid infection.

Usually, when a bit of calcinosis finds its way to the surface of one of my fingers, I can either pull it out or it will pop out on its own. Not this one. Recently, when I tried twisting it with a pair of tweezers, the top broke off, but there remained a needle-like protrusion that is just as stubborn.

So, I finally gave up and saw my hand surgeon last Friday. One look under the fluoroscope, and we had the answer. That pit is the tip of a chain of calcinosis that stretches all the way down my thumb. I’ve known for years that I have a veritable Milky Way of calcium pits floating in both thumbs and other fingers, but never seen anything quite like this.

We discussed options and agreed that he would debride it in an outpatient surgical center. It would be foolhardy to try to clean out all the calcinosis, because (a) it will probably grow back and (b) the risks to my thumb’s ability to function are far too high, especially in my dominant hand. So he’ll just remove a bit at the top of the chain, so I can use my thumb with less pain. We also agreed he’d put me out rather than use local anaesthesia. Too much digging around in my thumb would make me too anxious.

He ribbed me that I always bring him difficult challenges, and I teased him back that I didn’t want him to get bored. This is the same surgeon who saved my hands two-and-a-half years ago from horrific ulcers that lifted up to reveal bone and two broken knuckles, so I trust him completely. Back then we built a great rapport and mutual respect. He told me I should teach a course on wound care.

Now I await word about a date for the procedure, as well as confirmation that the surgical center he recommended is in-network for my Medex BC/BS plan. There’s a back-up, if that doesn’t work out. Always essential to check, first.

So, once again, my hands are in good hands. I wish I didn’t need to see my surgeon, but I’m very grateful that he’s 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: Sonny Ravesteijn