Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Home Alone

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Al is away this week, in Israel, volunteering on an archeological dig. It’s a dream he’s had for at least a year, and he’s having the time of his life. It’s also an activity that I cannot share. We agreed that my hands are simply not capable of the sifting and digging involved. There’s a heat wave there, with temperatures over 100 degrees Fahrenheit by afternoon. The group has to get up by 4:00 in the morning to arrive at the dig site by 6:00. Work for the day finishes by noon, to avoid the worst of the brutal sun. Not my kind of schedule.

So I’m very glad that we were able to make this work for him. And fine being here on my own. But this is the longest stretch we’ve been apart—nine days—in six years, the last time involving another trip he made to Israel to visit our older daughter when she was living in Tel Aviv.

It’s an adjustment. I have good friends and neighbors that I know I can count on if I need any help. But I’m not about to call for assistance with all the little ways that Al fills in for my hands on a daily basis.

On Monday morning, for instance, the ants decided Memorial Day was the perfect time to march into my office, which is a renovated porch. The inner wall is the back of our chimney, and I noticed a tell-tale pile of fine dirt along one edge where the brick meets the carpet. A few industrious, tiny brown ants were scurrying hither and yon. There were also a few flying ants (not termites, I checked) that had chosen this very sunny day to flit about.

This is an annual spring phenomenon, so I was more annoyed than surprised. I brought up the portable vacuum from the basement, put the hose pieces together carefully so as not to bang my fingers, and sucked up the dirt (and a few ants, no doubt), then sprayed some Raid around the base of the brick wall.

The next problem, once the ants appeared vanquished (I won’t know for a few days if the swarm is over), was dealing with the fumes from the insecticide. I had a lot of writing to do, and I didn’t want to be forced out of my office by the smell (and sitting with those chemicals all day). Only problem is that the sliding door to our deck in my office is hard to open, but even harder for me to latch shut. Al always does this for me. So that option was out.

There is a bay window that has two panels you open with a crank. I never open them, because the cranks are not easy for me to manipulate. But I didn’t really have a choice. I cranked one window a few turns, only to realize that the top was stuck shut. So I cranked it closed and tried the other side. Same problem. The only other window in my office has no screen, and I couldn’t force it open, anyway.

As they say, necessity is the mother of invention. Out I went, into our side yard, armed with a tack hammer, planning to use its pronged end to leverage open the upper half of the window. I didn’t want to damage the vinyl frame, so I worked my tool carefully up the length of the stuck edge. It only took a few easy tugs, and the window opened its full length. I must admit, I was pretty proud of myself.

I spent the rest of the day writing, with plenty of fresh air and no more ant activity. The only problem with the open window on a sunny holiday was that my next-door neighbor, whom I rarely hear, was out gardening for several hours, chatting with some other folks who were helping or visiting, I couldn’t quite tell. Certainly her right, on a beautiful day, but (grumble, grumble) I would have preferred less of a distraction.

This is where working in a newsroom years ago comes in handy. I can still screen out other people’s conversations when I’m deep into my writing. And that’s basically what I did. By the time I came up for air, it was after 6:00 p.m. I made good progress. When I cranked the window, it closed easily.

I’m leaving the vacuum upstairs until I’m sure the ants are gone. I’m hoping that’s the worst of my problems this week. (Friday morning, the day before Al left, he discovered that our hot water tank in the basement was leaking, a problem that involved a seven hour plumber’s visit, a new tank, and a lot of money. Fortunately this happened while Al was still here, or I would have been a lot more upset.)

My next challenge: taking out the garbage without screwing up my hands or breaking the bag. I think I can handle it. But the recycling can wait until Al gets home.

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: Vlad Tchompalov

Readymade

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As the weather finally warms up here in Central New England, I decided on Sunday to take advantage of sales and buy a pair of summer pants. Off to the mall I went, hoping for some good luck. I really don’t enjoy shopping for clothes much anymore. I’m particular, it’s difficult to find something that fits properly, and the mirror and neon lighting can be quite cruel. In addition, all the dressing and undressing can be quite tiring on my hands. But I had some free time, the sales looked good, and I was in the right mood to give it the old college try.

The first store I tried was a disappointment. None of the pants fit properly—either too baggy or too wrinkled. As a seamstress, I know how pants are supposed to fit without “smile lines” in the seat. I also look for quality fabric and workmanship. No luck. I did, however, find a nice summer sweater on markdown, so the visit wasn’t a total loss. (Never can have enough sweaters, year-round!)

So long as I’d made the trek, I decided to check out one more store. They, too, had a good sale on pants. This time, I found a pair that fit perfectly, right off the rack. Only one problem: I couldn’t zip up the zipper all the way. This wasn’t a matter of fit; it was a matter of workmanship. The pants had a left side invisible zipper with a small pull tab, and I could not grasp it firmly enough to pull it above the waistband seam. The seam was just a bit too bulky for the zipper to easily slide past. The pull tab hurt my fingers. And there was no sense in buying pants that I couldn’t fasten properly.

Fortunately, the same style was also available in several other fabrics, and a pair of navy blue pants not only fit, but also the same type of invisible zipper worked easily. So I bought them, happy with my find at a 30 percent discount.

As I drove home, I once again thought that I really need to finally figure out how to sew a basic pants pattern that fits and just use that for the future. I had tried this several years ago, but gotten discouraged with the results. Maybe this summer is the right time to try again. Sure would solve a lot of problems.

Meanwhile, I’m glad I found what I needed within an hour. And that I can zip the zipper.

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: Artificial Photography

‘Tis the Season

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April showers (and we’ve had plenty) certainly bring May flowers in my neighborhood. White-blossomed cherry trees and cream-colored callery pears, fuchsia magnolias and pink weeping cherries, along with maples unfurling pale green and purple leaves, grace sidewalks and lawns. White and violet violets speckle lawns that grow lusher by the day. The air smells delightful. With all the rain of late, pollen is subdued, and I haven’t started sneezing, yet.

In keeping with the season, another sign of spring has emerged: I have an infected ulcer in my left thumb. This spiked suddenly last Monday. Fortunately, it’s responding to antibiotics, which seem to be a perennial part of my world at this time of year. A good thing, because I’m traveling this week to New York for a mix of business and pleasure.

As my thumb became irritated, I wondered if I’d aggravated it by typing. Then I realized that I never use it to type. I’ve adapted to so many finger injuries over the decades that I automatically compensate for fingers that can’t comfortably or effectively strike the keys. Which made me wonder: How many fingers am I actually using to touch-type?

This is a bit like asking a centipede how it walks. I really have to stop and notice what I’m doing automatically, which can lead to more typos. But the answer is this: I use my pinky and ring fingers on my left hand, and my thumb, ring finger and pinky on my right. And I can still type quickly enough so that my thoughts translate almost immediately to the computer screen. It helps, significantly, to use an Apple “chiclet” keyboard, which has nearly flat keys with an easy touch, and a minimal rise so it’s easy on my wrists.

When my hands fell apart with severe ulcers two years ago (also in the spring), I learned to use Dragon dictation software to write. It was certainly a big help and enabled me to keep writing. But dictation taps a different part of the brain than writing brain-to-hands, and I will keep typing, even with only five fingers, as long as I can, because it is simply faster and more intuitive.

And so, I am dashing off this entry before I leave on my travels. Looking forward to fresh adventures—and to seeing how the flowers have grow when I come home.

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.

High Wind Warning

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Monday morning. I awake to wind, rushing and subsiding, like an angry tide. A quick check of the weather forecast on my phone reveals high wind warnings all day, with gusts over 50 miles per hour throughout the afternoon. I have to drive into Boston for an evening class. I imagine a tiring commute, fighting the wind, but am determined to go, despite plummeting temperatures.

As I make the bed and bandage my chronic thumb ulcers, I listen to the The Daily podcast by the New York Times. Today’s topic: whoever controls the incipient 5G network, which will integrate all things hooked to the Internet—self-driving cars, smart TVs, home security systems, communications networks, the power grid, artificial intelligence, our brains—will basically control the world. This is the new Cold War. The wind howls outside. I sit cross-legged on the floor, try to quiet my mind and meditate.

While cooking oatmeal and boiling hot water for tea, I call the lab that has sent me two invoices for recent bloodwork stating that we owe $150 because the claims were rejected by our insurance. This happened while our COBRA administrator had not yet told our insurance company that we had renewed our policy back in January, so I have to get the lab to resubmit.

I work my way through their phone tree until I reach the customer service line, which promptly puts me on hold. I put the call on speaker and stir the oatmeal. Winds rush through trees and around corners. I sit down at the kitchen table, sip my tea and begin to eat my comfort food. Peppy music crackles through the phone, interrupted momentarily by a male voice: We apologize for the delay. A customer representative will be with you soon. Your call will be taken in the order it was received.

Over the cycling music, another male voice cheerfully ticks off all the possible lab tests I could consider: prenatal screening with a non-invasive blood test that could inform expectant parents of any chromosomal abnormalities at ten weeks, an eight year risk analysis for diabetes, a comprehensive heart health profile. I wonder about lab test results in a world of 5G interconnectivity. Who will have access to what about me in the future? Who does already?

Eight minutes in, a woman takes my call. She asks for the invoice number, my name, address, insurance policy ID, group ID (name, rank, serial number). I answer. She goes silent. The wind rushes outside the kitchen windows. She tells me to disregard the invoices and that the claims will be resubmitted. I hang up, finish what’s left of my oatmeal, rip the invoices in half and text Al the good news.

I think about the bits of data shooting from my fingers through the Internet to his phone. I think about the digital footprint of this blog, drifting forever in cyberspace. I think about a video clip of three horses galloping away from a swirling wind turbine, seconds before it disintegrates in a powerful storm. As I type, the evergreen boughs of the yew beyond my office window chop and sway in the rushing wind.

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: Benny Jackson

Excuses, Excuses

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My desk is a mess. So is my office. Stuff is being fruitful and multiplying when I’m not looking. Honest.

I blame this cluttered state of affairs on my hands. It’s hard to pick up piles of paper and sort and file, because I’ll inevitably bang my fingers. There’s not enough room to properly store my books. I need to have that stack here and this stack there for easy reference. Right.

Then again, I like having lots of interesting stuff around me when I work. There are my little turtle statues to play with. And a bronze T-Rex that I got when I was maybe five years old at the Museum of Natural History in New York. And a cube that I can rearrange to show various paintings by Edward Hopper, depending on my mood.

Of course, I must have at least two pens nearby and a red marker and yellow highlighter and pencils to keep track of my work progress in my handy Bullet Journal. (Yes, I’m addicted.)

And how can I NOT have that pile of reference books on the side of my desk? Or those mail solicitations that I need to remember to follow up? Or those really cool beads that I bought on sale last week to string into a necklace?

Then again, it would be nice to have a clear space in front of me and to get rid of those papers I really, really need to shred, already. And move that stack of old files to the cabinet in the basement. And make some decisions about what stuff is truly necessary.

Al has offered his hands to help anytime. Maybe when I can no longer move in here, I’ll take him up on 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.