Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Design Flaw

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Last Friday it was really hot, in the 90s, the kind of sudden temperature spike that causes spring to fast-forward. The kind of day that makes dough rise quickly, as was the case in my kitchen, because Passover was over and I needed to bake some challah for Friday night. By late afternoon, the dough had plumped high in its bowl. Even with the back door and porch slider open, the kitchen was uncomfortably warm.

So, I opened our two solar-powered kitchen skylights to let the heat out through the roof.  They operate by remote control, and if it rains, close automatically. Quite the technological innovation, compared to our old leaky skylights with their clunky crank that required a wobbly pole to open and close.

Cleaning up after dinner, I picked up the remotes (each window has its own) and clicked the button to close each skylight. The left one immediately began to shut. But not the right. I switched out the AAA batteries and tried again. No luck. I tried the remote for the left skylight. Nope. Temperatures were sinking overnight into the 50s, and the skylight was wide open. I said to Al, “We have a problem.”

Now, Al, by his own admission, is not Mr. Handyman, and although I can see what needs to be done, I cannot often do it if the task requires some manual dexterity. Also, when I get stressed, I have trouble with word-finding. This is a problem that developed after I hit menopause, and it is extremely frustrating, which only makes the problem more pronounced. I know what I want to say, but I have to talk around the subject to get to the words I want. “Thingy” is one of my fall-back nouns. Not great for giving directions to my dear husband.

I had no idea where I had put the instructions for the skylights, so I began searching online for our skylight brand and problems with the remote. I soon learned that the issue involved resetting the wireless signal between the skylight and the remote. That made sense. Just one problem. You had to remove the insect screen from the skylight in order to do the reset, because the sensor was in the skylight frame. “It’s easy,” reassured the YouTube video. “All you need is a paperclip.”

Really? Now, I don’t about you, but as far as I know, skylights are located in ceilings. And in our kitchen, the ceiling is high, maybe 12 feet. I imagine that other people install their skylights in even higher ceilings. So you need a tall ladder to reach it. Which we do not own. On the rare occasions when we have a chore that requires one, we borrow from a helpful neighbor up the street. However, at 10:30 at night on a Friday, I was not about to call him.

Al’s first thought was to go up on the kitchen roof and try to make the adjustment from outside, an idea I emphatically vetoed. Even though the one ladder we own would make that possible (the eaves are lower than the peak of the roof), it was dark and too risky. Plus, as we later discovered, it would not have worked.

But he did convince me to let him try to bring that old rickety ladder inside and see if he could reach the skylight screen. He managed to prop it up safely enough, with me holding it steady and spotting him, to climb up and, by standing partly on the ladder and partly on the kitchen table, remove the screen from the skylight.

With Step 1 accomplished, we moved on to Step 2. This involved finding the tiny hole in the skylight frame that accesses the reset device. My ability to explain this to Al while I was getting more and more agitated because I could not find a working flashlight and we had to resort to using Al’s iPhone for him to locate this little pinhole in the skylight frame while I was replaying the YouTube video on mine was, shall we say, impaired.

However, we did locate the hole. Here’s where the paperclip comes in. You have to unbend a paperclip, insert it in the hole for 10 seconds, and then the skylight will move. Yes, a paperclip. Why not a button? Why not a switch? I have no idea.

Al inserted the unbent paperclip. Nothing. Now I was really getting frantic. How were we going to close it before the temperature dropped? Al suggested trying a larger paperclip, since he didn’t think the first one went in all the way. So I dumped all my paperclips on the table and found a bigger one, which I unbent and gave him. And, voila! The skylight began to hum and close. Thank goodness.

There’s a third step involved, which we postponed: sticking yet another paperclip into a hole on the remote, after you do the 10 second routine on the skylight frame, to re-pair the remote with the window. That will wait for a sunny day when we can borrow our neighbor’s ladder and not worry about a temperature drop.

After we put everything back in place and tidied up the kitchen, I was relieved. This was not how I had intended to spend Friday night, but we had managed to solve the problem, together, without breaking anything or getting injured or having an argument.

I was also incredulous. What genius thought it made sense to design a skylight that cannot be closed manually if it fails electronically, without climbing on a tall ladder to do so? And why a paperclip? This presumes not only that you have a tall ladder, but also that you have a stash of paperclips, which, in a world evolving away from using paper for documents that need to be clipped together, is becoming an anachronism.

But I digress. The one bonus of this adventure, if you’ve read this far, is it gave me a ridiculous story to tell. And we all need a good dose of ridiculous these days.

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.

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

Namaste

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Staying in shape during the pandemic has been, shall we say, a challenge.

The nearby college gym, where I walked an indoor track and rode a stationary bike, shut down to non-students for months in 2020. Even when it reopened for members like me the following year, I didn’t want to risk Covid exposure. Same story for the studio where I took Pilates classes.

I tried some online classes, but that didn’t work. So, I fell back on my favorite form of free exercise, walking my half-hour route around our neighborhood. But, of course, cold weather and rain and ice presented plenty of excuses to cocoon inside.

Other than my daily morning and evening stretches, which have spared me from becoming totally inflexible, I have definitely lost muscle tone and strength. I’ve been somewhat better about taking my walks in good weather, but now that we’re entering winter here in New England, I’m having a harder time pushing myself out the door before it gets dark.

Given my recent diagnosis of Type II stress-induced pulmonary hypertension, however, something had to change. And so, after procrastinating and feeling more creaky as a result, I finally decided to sign up for an easy yoga class to build strength, flexibility, and stress-management skills.

The studio is 15 minutes from home in a lovely, historic carriage house near downtown. As soon as I walked into the space, with its soft lighting and lavender scent, I felt calmer. I introduced myself to the instructor and explained my limitations (can’t flex my wrists, limited range of motion, balance issues, stiff ankles and toes). She was welcoming and immediately helpful, setting me up with a thick yoga mat, knee pad, blanket, and blocks for support, and gave suggestions for how to modify some of the poses. Then, to my surprise, a friend showed up, so I had a buddy.

The hour passed quickly, and the pace was slow enough for my skill level. I’m pretty good at figuring out how to modify poses, although my muscles were definitely trembling with some of the balancing and downward-facing positions. But I made it through. And the most amazing thing—my back felt great afterward, a major bonus.

I returned last week with my younger daughter, who was visiting for the holiday weekend. She has more yoga experience than I do, and she really enjoyed the class, validating my assessment that the instructor is excellent and it’s the right level for me. And, it was great to be able to go together.

So, I’m going to do my best to continue. It feels good to be back in a studio setting with an expert instructor who really cares to help me succeed. It’s also great to realize that I’m not as out of shape as I thought. And finding a much-needed weekly oasis of calm? All the better.

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: Zoltan Tasi

Beautiful

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One of the scariest aspects of a scleroderma diagnosis is to realize how deforming this disease can be. Everyone is different, and how your body changes will be unique to you. Early on in my progression, the skin on my face became so tight that I began to have discomfort blinking. For some, this facial tightening can make it impossible to close lips over teeth. It can reduce your hands to look clawed. At its most virulent, it can make obvious the skeleton beneath.

For all those who live with scleroderma, this is a terrifying prospect. For women, especially, among whom the disease is four times more prevalent, and especially for young women, it can be a harsh sentence in a culture that puts such a premium on youth and physical perfection, narrowly defined.

I have been extremely fortunate that, over the forty-plus years I’ve lived with scleroderma, my skin loosened. I credit the use of D-penicillamine, with which I was initially treated. Six months after I started taking the medication, I began to once again have face wrinkles. Therapies have advanced significantly since then.

Nonetheless, my skin is still not normal on my face, particularly around my mouth and eyelids, and in my fingertips. It has been a long adjustment to aging prematurely. That is why I found this interview with Chloé Cooper Jones, author of the recent memoir Easy Beauty, to be so apt and powerful.

Cooper Jones, who was born with a rare congenital condition called sacral agenisis, has spent her life living with reactions to her visibly disabled body. A writer and philosopher, she explains the difference between the kind of beauty that seems obvious (a sunset, a Monet painting) and that which is more complex and difficult. Her conversation with sociologist and writer Tressie McMillan Cottom delves into the ways we define beauty, what makes beauty intrinsic, and how we view and live with disability.

It is insightful and inspiring. It’s given me some needed perspective as my body continues to age and I contend with my own scleroderma. I hope it does for you, too.

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: davisuko