Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

anxiety

Deep Dive

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I began hyperbaric oxygen therapy this week. I was nervous on Monday, but for anyone considering this treatment, I can now, based on my first adventure, assure you that it’s not as scary as it sounds.

One of my biggest worries has been figuring out how to do my finger dressings using materials that are acceptable inside the HBO chamber. Based on a meeting last week with Wound Center staff, as well as the fact that I had decided to take advantage of the earliest morning option, I realized that I needed to come up with a solution that I could do the night before. Switching my dressings takes at least an hour on the days when I don’t need to change the bandages for my grafts; on the alternate days when I deal with the grafts, it can take as long as two hours.

Unfortunately, the ointments that I have been using, as well as the bandages, are off-limits for this treatment. You have to use 100 percent cotton products and no creams, ointments or gels. The gauze that my surgeon had given me for the grafts includes a petroleum ointment, so that’s a nonstarter. I’ve also observed that this dressing is creating too dense a moisture barrier on the skin surrounding the grafts, causing some of it to turn white. Not good.

Fortunately, the Wound Center staff gave me a couple of good alternatives: a silicon gauze film that is tacky but does not adhere to the grafts — a big bonus for managing the sutures. They also gave me rolls of cotton gauze to try. Sunday night was a two hour production, but I finally figured out how to provide good coverage, with some help from Al.

Unfortunately, I did not sleep well. I was uneasy, my gut was reacting to a very rich dessert that I shouldn’t have eaten, and rain was pouring outside. Finally eked out three hours, but I was not in great shape when I woke up. Thanks to Al, I got to my appointment on time at 7:00 a.m.

Understand that I am not a morning person. But going any later in the day would mean I’d have no time to get any work done in the afternoon. (The entire dive lasts about 2 hours and 20 minutes.) The hospital was quiet, and the Wound Center was not yet bustling with activity. Indeed, other than the latest headlines on one of the overhead video screens, it was actually quite peaceful. Ruthie, my tech, got the other three experienced patients ready and into their chambers, so that she could spend more time with me doing intake.

First, I had to change into hospital pants and a Johnny top. She gave me the “smallest” size they have — which would have fit at least two of me, if not three. Fortunately the pants had a good drawstring. Next, I got settled on the stretcher that fits into the cylindrical HBO chamber. It rides on a track; the stretcher is positioned at one end of the open chamber at the outset. Your head is slightly raised, and you can request a sheet and up to three blankets to stay warm. I decided on two blankets to start.

After taking my vital signs and reviewing the long checklist of prohibited materials (no, you cannot take your smart phone with you), Ruthie attached a small metal square to the inside of my wrist with a strap that covered it — this was a grounding device to avoid static electricity. Remember, they fill the chamber with 100 percent oxygen.

Following one last trip to the bathroom (ugh), I was ready to take my “dive.” They use this metaphor because once you’re sealed inside the chamber (glass top so you can see out and around), pressure increases as if you’re doing a deep ocean dive. This was the hardest part for me. Both my eustachian tubes are partially blocked, chronically so, and the increasing pressure was at times painful. Ruthie kept talking to me via a telephone receiver, guiding me through the process and explaining how to pinch my nostrils and blow through my nasal passages in order to ease the pain. I had an odd side effect (naturally): as the pressure increased on my ears, it made me dizzy to speak.

Finally, after maybe 20 minutes, I got through the pressure change and reached equilibrium. At this point, I was receiving 100 percent oxygen. It is very easy to breathe 100 percent oxygen. Ruthie turned on the DVD player with my CD book, a collection of linked short stories by Alice Munro. I was pretty drowsy, and the first disc was not as engaging as I’d hoped, so I dozed a bit. By the second disc, the storyline had picked up, and I was feeling more at ease, not minding the occasional vibrations of the chamber or sense of confinement.

Al stopped by a couple of times — before he started work for the day (he’s a social worker at the hospital) — and a couple of hours into the dive (he greeted me on the phone receiver with “Hello, Cookie Dough!). To my surprise, it was soon time to reverse the pressure, which took about another 15 to 20 minutes. This time, my ears didn’t hurt, although they bubbled and crackled, which is apparently quite normal.

I was relieved when Ruthie pulled my stretcher out of the chamber. “I survived!” I exclaimed. “You did!” she answered. All three of the other patients had come and gone, there were new patients in the midst of their dives, and the place was hopping. I got changed and then spent another hour in a private changing space that wasn’t in use, redoing all of my bandages with my normal silver alginate dressing, creams as appropriate and bandages. My fingers looked nice and pink. They paged Al for me, and he took a break from work to drive me home and set me up for lunch, because I was pretty tired by this point.

An hour’s nap helped, and then I found my way back to my computer to do some writing and editing. I get to do it all over again the rest of the workweek, for the next six weeks — but, I sincerely hope, with much improved sleep. Onward.

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.

Image Credit: David Talley

Sticking Point

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Now that I’m starting to get back into a regular schedule, it’s a relief to be able to focus on work and other writing, and forget about my hands for a few hours. They do have a way of reminding me, however, that they need attention. As in beginning to tingle and twinge within a half-hour of time to take my pain medicine. Who needs to set a cell-phone alert? It reminds me of how our dear departed golden retriever, Ginger, used to bop my fingers off the keyboard with her nose when it was time to take a walk.

I wish it were still her, and not my fingers, calling the shots. One of the hardest aspects of this whole ordeal is simply having to accept the fact that I cannot escape it. I can’t make my fingers heal any faster than they are able. I’m certainly not going to cut them all off. And I’m not about to roll up in a ball and hibernate until it’s over. I can only sit with it, minute by minute, hour by hour, day by day.

I boost my spirits by celebrating small victories — the ability to make a few notes by hand, regained stamina to sit at my desk for another hour, a creative solution to cracking an egg and separating the white from the yoke without messing up my bandages.

Scleroderma is a disease that makes you feel stuck in your own skin. I remember that sensation all too well from the early years when my illness was still in a very active phase. About three decades ago, my skin had tightened halfway up my forearms, and I was beginning to have discomfort blinking. The veins were not visible on the backs of my hands. My skin felt like leather that had been wet and then dried in the sun. It was terrifying. Mercifully, treatment with D-Penicillamine, since discredited in the research literature (but I am convinced it saved me), reversed the tightening. Although my skin is not normal, it has been decades since I’ve felt so trapped within it.

Now, I feel stuck in a different way — stuck in what feels like an endless cycle of doctors appointments, dressing changes, pills upon pills, and the sheer inability to do what I want to do the way I want to do it. That, plus the discomfort and pain that is just what I have to live with for who knows how long. It is very frustrating. Meditation and good, healthy distractions, like getting back to my creative writing, are among the best solutions. Hugs from Al help a great deal, too.

When I dip into the news, a practice I am trying to limit to reading reliable sources and listening to thoughtful podcasts in order to keep my sanity, I feel a different intensity of stuck-ness. How is it possible that we are actually seriously discussing the possibility of nuclear war with North Korea? What can any of us do to stop it? I can still remember Cold War air raid drills when I was in grammar school, kneeling between classmates in the school hallway with one hand under my forehead and the other on the back of my head. As if that was really going to save any of us from the A-bomb. The fact that reckless, macho-on-steroids quips and put-downs are defining this path we are on, rather than serious diplomacy, boggles the mind.

In a very strange way, my hand saga provides a welcome distraction of stuck-ness from all of this. How ironic. At least, when it comes to my own health, I have some degree of control over the outcome. God willing, the adults will take charge and walk us all back from the brink of an unthinkable fate.

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.

Image Credit: Nick Abrams

Clued In

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All day long, I think about words. For a writer, they are my lifeblood. Sometimes, my head feels so full of words that I need to do something, anything, nonverbal. Walking helps. So does weaving or sewing—making something with my hands, however challenging that may be.

But one of my favorite ways to relax is to immerse myself in words and more words—doing The New York Times crossword puzzle. I used to limit myself to the Sunday crossword because we have a print subscription to the big, hefty weekend edition. Then came the 2016 presidential election. I decided I needed to support a free press more actively and bought a digital subscription to the Times (as well as The Washington Post).

My Times subscription came with an added bonus—a reduced digital subscription to the crossword app. Why not? I thought. I need a break from all the bad headlines.

Doing the daily crossword has now become something of an addiction. There’s the Monday crossword, an easy start to the week that I can finish in about ten minutes. Tuesday is usually a snap, too. The puzzles get harder by midweek and can be a real challenge by Friday. Saturday’s puzzle is almost always a stumper. Sunday is a crapshoot. Sometimes I get the theme right away; others can take a few days to finish.

Aside from being a welcome distraction from upsetting news (which I certainly understand better, now that I’m reading more comprehensive coverage, but wish this weren’t such a disheartening civic responsibility), the crossword’s digital version has an added bonus: It’s so much easier to complete with a stroke of my laptop keys than to write in with pencil. My hands don’t get as tired. I don’t have to struggle with a smudgy eraser (no, I’m not one of those pen-wielding crossword purists).

This is especially true for the Sunday puzzle. A few years ago, the Times switched format to a semigloss paper stock, which I find incredibly difficult to write on. It requires far too much finger pressure to inscribe anything legible on it, and the light reflection off the paper makes it hard to see what you’ve written. Fine for magazine photos, not for Number Two pencils and bifocals.

The downside of the digital version: It’s much more tempting to cheat and look up answers on the Internet.

To avoid that downfall, I’ve invited Al, my crossword ninja, to do the puzzles with me. He has an uncanny ability to decipher clues. And it’s a fun way to relax together in the evening.

Who knew that “fake news” wars could have such a delightful side-effect?

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.

Oasis

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I’m finding it difficult to write about anything other than the chaos in the world, in our country, in my heart. So what I’m sharing today may seem odd. But we chose to immerse ourselves in art and floral arrangements at the Worcester Art Museum’s annual Flora in Winter exhibit this weekend. I’m grateful that I have the opportunity to do so. It is, indeed, a privilege.

Inspiration, courage, solutions, just finding the next step can become clearer when you give yourself the chance to find beauty in the world. I share these with you, Dear Reader, in hopes that you will find inspiration, too.

“The Blue Bowl” by Roger Fry

Hand-drawn mock-ups of Ed Emberley’s “Drawing Book of Animals”

“Selma to Montgomery March, 1965” by James Karales

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.

Mouse Wars II: The Empire Strikes Back

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It’s been a month since we first confronted a mice invasion in our home—during a bright full moon. Well, the moon is full again, and the problem we thought we’d solved weeks ago turns out to be a lot more intransigent than I had hoped.

4 muisjes op kaasI hate the idea of killing mice. It’s not in my nature. We never had an issue while our dear old Golden Retriever, Ginger, was alive. But Ginger died just over a year ago, and it seems that the mice are having a veritable field day somewhere inside the walls or under the floorboards of our house.

This all started when we were careless enough to leave a bag of birdseed unattended in our garage. Mice discovered it and took it as an invitation to settle in. When I finally sealed off the bag in a plastic bin, they sought refuge inside our warm and cozy home. Under a full moon, they began zipping all over our first floor.

Given that I have scleroderma and am very susceptible to infection, we decided to set traps and stop the invasion. We caught a half dozen mice. Things settled down, and I thought the mice had moved on.

No such luck. When the temperatures dropped a couple of weekends ago to -19º F, all of a sudden we discovered that we were not alone. A mouse popped up in Emily’s room while she was home visiting, to her alarm. We set a trap. No takers.

I set a couple more traps. Nothing. But the mice were leaving their calling cards all over the place—behind the kitchen garbage can, in back of a pile of books near Al’s armchair, in the upstairs bathroom, you name it. One recent morning, Al found a foil-covered peppermint patty that had been dragged from the kitchen table to the floor, the wrapper nibbled to shreds and part of the chocolate chomped away. I’ve got to hand it to them—they know the meaning of teamwork.

Last Friday I went to the hardware store and bought some bait traps. But I didn’t have the heart to set them. Maybe the mice would go away! Maybe they’d realize there really wasn’t any food lying around (no more peppermint patties, for certain) and it was time to move on!

Then I walked into the kitchen Saturday night and saw a mouse darting from the top of the computer cable box (no doubt warming itself). On Sunday, I was working at the kitchen table, too absorbed in writing my novel to get up and check out the slight rustling noise in the dining room. Later, we found a couple of calling cards on the dining room table. Ugh.

So, Monday morning I finally called the pest control professionals. Here’s what I learned: The reason we didn’t catch any more mice had nothing to do with how many mice were left. Mice are smart and they’d figured out that the traps were deadly. And the fact that we’ve found mouse droppings upstairs and down means we have a big problem on our hands.

A mouse expert is coming first thing Friday morning to do an inspection, set the bait and close off any small mouse holes. I wish we didn’t have to go this route, but from the research I’ve done, there really isn’t an alternative when it gets to this point. A mouse’s gestation period is about 20 days. We’ve gone through a few cycles, easily, since all this started, for who knows how many females.

Mice have been on this planet as long as humans. They will probably outlast us, in the end. They make cute pets. They have helped scientists discover much about animal and human behavior. They are entertaining characters in children’s books and cartoons. But they are not welcome to colonize our home.

Here’s hoping, next full moon, I’ll have nothing more to report. May the Force be with us.

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.

Image Credit: ChIandra4U