Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

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

Oscillations

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It’s that time of year here in New England when the temperatures ripple like a sine wave. One day it’s in the 40s, then we slide into the 30s and even the 20s, then up to the 50s. As I write this afternoon on President’s Day, it’s a relatively balmy 54°F. Later this week we’re expecting snow showers, and the weekend promises to be frigid.

Al is more sanguine about this than I am. “It’s winter,” he says, with a shrug.

So I layer up my sweaters and shed them as warranted. My fingers are cracking, like a sidewalk that shrinks and expands with winter’s thaw. I’m using up more bandages, as I always do this time of year.

The transition to spring is always the toughest on my digital ulcers, harder than in the coldest months, when the cold is more constant. At least, it used to be. With climate change comes more temperature ups and downs. A geographer friend once told me that our weather here in Massachusetts will become more like Virginia’s, and Maine’s will become more like ours used to be. His prediction seems prescient. So far, we’ve only had one short stretch of Arctic temps this season and hardly any snow.

I am profoundly concerned about the implications of a warming planet and am devoting volunteer hours to my city, helping to mitigate the effects of climate change locally. But, I must admit, my hands don’t mind. It’s selfish of me, but these milder winters are just easier to manage, without our having to move south. The transition to spring and summer will always be a challenge, because it’s the relative temperature change that plagues my ulcers. But shorter spurts of bitter cold? Less snow and ice? I’ll take it.

Life is a series of adjustments. Some we can predict. Others, we can’t. The older I get, the more I realize that staying nimble in the face of all that we can’t control is crucial to resilience.

And so, with just one more week of February ahead, as daylight grows notably longer and the switch to Daylight Savings Time looms on the horizon, I will continue to layer up and shed and layer up again, tend my fingers, and make sure I have a full inventory of bandages and other dressings. I can’t change the weather, but I can surf the sine waves.

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: Pittigrilli

Almost Autumn

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With Labor Day behind us and schools here already in session, it’s starting to feel like fall. The maples on our street began to drop leaves, a few at a time, in mid-August. A week post our vacation, the days are noticeably shorter, with sunset at about quarter past seven.

I find this time of year bittersweet. It’s hard to let go of summer, even as it’s a relief to be out of the 90+ degree Fahrenheit heat wave and soupy humidity of the weeks before our travels. At the same time, with schools in session, everyone back from vacations, and the Jewish New Year right around the corner, fall is always about new beginnings. Even as trees go bare, they are storing sugar for the long winter ahead and forming new buds.

We have one more big family celebration coming up this weekend, and then it’s time to focus, once again, on work and writing and election season, on putting away summer clothes and getting back into layers, on birds migrating south and trees hardening off. I’ve gotten away with only my thumbs in bandages for several months, and I know that is about to change as the temperatures drop and more ulcers appear. So it goes.

To everything there is a season . . .

(Click the link, above, if you can’t see the embedded video of Turn! Turn! Turn! with Judy Collins and Pete Seeger.)

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.

February Thaw

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I was finally able to take a walk Monday afternoon around my neighborhood. The sun was bright, the sky a robin’s-egg blue, temps in the mid ’50s, and my thumb had healed enough so that I could swing both arms without the pain of gravity’s pull on a swollen finger.

All good.

The snow from a recent storm and subsequent snow showers had mostly melted, sending water trickling through storm drains. A mourning dove cooed plaintively from a nearby rooftop. As I walked, the too-tight muscles in my back began to relax. Annoying chatter in my mind quieted, and I focused on what I saw, heard, smelled . . .

Hints of green amidst bleached grass.

A watchful dog’s bark.

A power drill’s whine.

A passerby’s hello.

Tiny buds on tree branch tips.

Hockey sticks slap slap slapping.

Overhead a private plane’s purr.

Wood smoke’s tang.

Sparrows’ chatter.

Sneakers’ scrunch.

Spring can’t come too soon.

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.

In the Weeds

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Last week did not go as planned.

I’d been successfully managing two infected finger ulcers with my usual skin care regimen, plus an antibiotic that normally clears up any such issues within a few days. On Tuesday, I was on Day 10 of that medication and thinking I could probably discontinue it by Day 14. (My docs trust my judgment, given four decades of managing this disease.) But by that afternoon, the ulcer on the inside crease of my right thumb began to smart.

At first, I thought that my dressings had simply dried out and needed to be redone. But after my evening shower, I discovered that my thumb was not happy—not by a long shot. It was swollen and so painful that I ended up taking hydrocodone to try to control the cycling nerve shocks (you really have no clue how many nerves are in fingers until something like this happens). The pain woke me in the middle of the night, requiring a second pill. Even still, the pain persisted in the morning.

Now, I really hate the side effects of narcotics. They make me woozy, my mouth even drier than normal, and I just feel off. And in this case, the hydrocodone didn’t help all that much. Fortunately, by Noon I was able to reach my ID specialist, who prescribed another antibiotic that I’ve used before, which attacks a different spectrum of bacteria. Clearly, I had picked up something, somehow, that was new.

I was able to manage the pain during the day by alternating acetaminophen and ibuprofen, and took two doses of the new antibiotic by the time I went to bed. More interrupted sleep, but I was determined to not take anymore narcotics because I had to drive to Boston the  next day and see my rheumatologist for a long scheduled appointment.

During the exam, we discussed pain management, and my issues with hydrocodone and related drugs. He mentioned that a number of his patients have had good results with cannabis medications to control pain. This had never occurred to me. Armed with that new idea and a prescription for lidocaine ointment, I went home.

A small drop of the lidocaine helped block the pain when I changed my dressings that night. I had a better sleep. But by morning, the pain came roaring back. I have not experienced anything this severe since I had major ulcers several years ago. Even with the ointment, I could not stop the nerves from zapping. I was really at a loss after bandaging my thumb.

Then I remembered a jar of hemp oil ointment that Al had gotten a while back for some joint pain. I’ve used it successfully for lower back pain on occasion. So I dipped a cotton swab in the jar and painted a line of hemp oil around the base of my thumb, just below the bandage. Within minutes, the intractable pain ceased.

Really, it was a miracle. And it lasted all day.

Needless to say, I’ve been applying it the same way since Friday. Between that, the lidocaine, and my usual skin care, plus the new antibiotic at last kicking in, my thumb (knock on wood) is finally healing again. I also discovered that the hemp ointment helps with another occasional discomfort—phantom itching of my right middle finger, about an inch above what’s left of it after surgery several years ago. It’s an extremely odd and annoying sensation, because I can’t scratch it to relieve it. There’s no there, there. But a little of the hemp ointment completely eliminated the itchy feeling. Who knew?

Which is a long way of saying that I am extremely grateful for CBD therapeutics and my wonderful medical team.

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.