Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Reprieve

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The windows are open and James Brown belts “I Feel Good” on our local NPR station as I write at the dining room table this Monday evening. Earlier today, I took a walk without a coat, without a jacket, without gloves or a hat. All the trees on our street are leafing, the magnolias are in full bloom, joined by forsythias and rhododendrons, tulips and violets.

NYC SkylineIt actually hit 79 this afternoon when I was out running errands, although my Prius recorded the outdoor temp as 64. I think it was as shocked as I, that it finally looks and feels like spring.

Even better, I’m down to only four bandages on my fingers. Still on oral antibiotics to ensure that one very persistent infected ulcer continues to recede, oh so slowly. Both thumbs will also take more time to heal and a chronic spot on the inside of my right ring finger has acted up. But compared to where I was just a month ago, it feels like my hands are nearly bare.

This is all the more amazing, given that I did a lot of traveling last week. Business took me to Manhattan for an overnight and then a train ride back to Boston for another overnight, to conserve my energy for a writer’s conference the following day. I schlepped my wheeling carry-on bag around Midtown and Chelsea, down and up subway stairs (why are there so few escalators and elevators?), over curbs and streets and sidewalks being torn up and repaired, in and out of hotels, up and down train platforms. One very considerate New Yorker (yes, they do exist) helped me carry my bag up a second flight of subway stairs, but I did much of the hauling myself.

My hands, for the most part, did okay, since I was extremely careful with how I grasped the bag’s padded handle. But my right arm began to protest by the end of the trip. What a relief to discover that there’s a working escalator from the Amtrak platform to Boston’s Back Bay Station (not so for commuter rail tracks) when I arrived late Thursday night—and only a three minute walk to my hotel.

I was also compulsive about wearing gloves and using hand sanitizer throughout the trip. It paid off. No new infections.

I’m getting better at travel logistics. Definitely easier to pull this off as the weather improves. My new coat was just the right weight and protection for cooler, 60ish temps last week. And the travel blanket I carry with me provided the extra layer of warmth I needed on the train, which was way too air conditioned, per usual.

Coming home on the commuter rail to our home station, after a stimulating, rewarding few days, I was wiped. No energy left to read much or write on the train, just watched the scenery fly by. I was grateful I wasn’t driving. I was very glad to see Al, standing near the platform, as we pulled into the station. We enjoyed a lovely Shabbat dinner together at home. I slept soundly.

Tonight, the windows are open and its still 70 degrees. Soul Serenade is wrapping up with “Lord, I Feel Like Going Home.” It’s finally spring.

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.

Thawing

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Winter’s grip is at long last loosening. The icy ruts on our street mostly melted as temperatures rose into the 40s on Monday. The sun shone all day. Snow drifts are slowly, slowly shrinking. Buds are visible on the Callery pear in our front yard.

And somewhere under all that snow, I’m sure there are crocuses waiting for the sun to warm the frozen earth just enough for their tender leaves to push up and free.

Hard as it is for my internal clock to adjust to that first Sunday when we jump forward to Daylight Savings Time, it’s a delight to have the days feel longer again (even as I know it’s just an artificial shift in how we perceive when the day begins and ends).

March can be a deceptive month here in New England, promising spring and then dashing hopes with a late snow storm. But I’m feeling optimistic. According to the weather reports, the Jet Stream has finally moved farther north, which means we’re in for an easier, sunnier spell.

We’re certainly due after all that record-breaking snow and cold. My hands have taken a beating this winter. I’m finally weaning myself off a long round of antibiotics to clear up two infected ulcers, and I have five fingers swaddled in bandages as intransigent ulcers gradually heal. Spring can actually be my toughest season, though, so I’m hoping these will continue to improve.

Even still, there’s just something about seeing the promise of new leaves on the trees and watching water bubbles slide beneath the icy crusts along the street that I find reassuring. No matter how bitter the winter we’ve endured, the snow will melt, the temperatures will warm and the world will turn green once again.

I’m looking forward to wearing something other than the same sweaters, in varying combinations, and foregoing multiple layers—leg warmers, wrist warmers, two or three tops, wool pants, neck scarf, down coat, outer scarf, wool hat, insulated gloves, boots (have I forgotten anything?)—every time I go out the door. As it is, two of my good cashmere v-necks, which I’ve had for years, finally wore out with holes at the elbows. Maybe I’ll figure out a way to shorten the sleeves.

Most of all, I’m looking forward to walking outside with my coat open and a warm breeze on my neck and the sun warming my face.

Spring officially arrives a week from Friday. Oh, yes, I’m ready.

Photo Credit: dsearls via Compfight cc

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.

Into White

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This is quickly turning into a record-breaking winter here in Massachusetts. On Monday, Ground Hog Day, we got another foot-plus of snow on top of our record nearly three feet from last week. And it looks like there’s more to come.

I feel like I’m stuck in an endless loop of snow storms.

It wouldn’t be so bad if I didn’t feel so confined by the mounds of white stuff. I can’t shovel, and I can’t use a snow blower, even if we had one. I simply can’t stay out in the cold that long, and the temperatures are sinking into the single digits, with sub-zero wind-chill.

The (thankfully) warm but dry air in our home is wreaking havoc on my digital ulcers—up to eight on as many fingers. I’ve been on antibiotics for more than two weeks, now, as two messy ulcers slowly clear. Last week, I ordered a shipment of 1500 bandages (that’s 15 boxes of 100 each), but I’m now wondering if they will arrive before I finish my last box, given all the snow and inevitable delays.

All of this prompted me to do some research about long-term weather forecasts. Not that it will make any difference.

It doesn’t look good for February.

According to meteorologists who follow world-wide weather patterns, at least two factors on the other side of the globe are controlling our snow fall and temperatures here in New England:

  • A pool of warm water that started off around Hawaii three years ago and migrated to the Gulf of Alaska is now gradually shifting into the extreme eastern Pacific. This pumps warm air up into the atmosphere (if I understand this correctly), which then forces arctic air down across Canada and into the U.S.
  • Then there’s the amount of snowfall over Siberia. Apparently, there was a lot more snow cover in that part of the world than normal last October—more than an additional million square kilometers—and that affects the amount of snow we get in this part of the world, right around this time of year.   

There’s a lot more to it than that, but I won’t even attempt to summarize, especially if you don’t share my weather geekiness. Basically, it all comes down to physics, and the fact that our lives and circumstances are much more intertwined around this planet than we realize.

Bottom line: Our average annual snowfall here in Central Massachusetts is 64 inches. We’re now up to 57 inches, just in the past 10 days. And we’re supposed to get more snow on Thursday and again on Sunday to Monday.

A part of me wants to scream and head someplace sunny and mild (assuming I could actually get a flight despite all the snow). But this is New England, and we’re supposed to be hardy. So I will do my best. I will take necessary safety precautions and try to enjoy the journey into white. And I will continue to remind myself that—long range forecasts notwithstanding—the most important lesson from a winter like this is that control is an illusion. The only thing we can manage is the moment we’re living in, one snowflake at a 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.

The Right Tools

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My dad had a saying: “Any problem can be solved if you have the right tools.” He was something of a tool geek. In the basement of our home, hanging on a pegboard over his workbench, he had every kind of tool imaginable: crescent wrenches, socket wrenches and pipe wrenches, neatly arranged from small to large; flathead and Phillips head screw drivers; a carpenter’s hammer, tack hammer, ball peen hammer, rubber mallet; an electric hand drill with a full set of wood and dry-wall bits; rulers for every task.

Then there were his electronics bench, with its oscilloscope, soldering iron and various pliers; the table saw, with a variety of sharp-toothed steel discs hanging nearby; the drill press; the radial saw. Wooden shelving he’d built was filled with nuts, bolts, screws and nails in baby food jars, each labeled and ordered by size and type. And that’s just the short list.

I found it fascinating. I was his little helper, handing him the right transistor to build his latest Heathkit or the proper socket wrench to adjust his tractor snow-blower.

I learned a lot about how to make things (and how to get out of his way when he inevitably made a mistake and started cussing) and a deep respect for the value and care of good tools. Although my hands don’t work well enough to be able to build my own bookcases or tables or chests of drawers, I understand what’s required and how to envision the project and its implementation.

I also learned an approach to problem solving that has carried me a long way in dealing with scleroderma. Just because my hands don’t work properly doesn’t mean I can’t do what I need to do. I just need to figure out a different approach. And, sometimes, get the right tools.

Dad died five years ago, this past week, on the fifth night of Hanukkah. And so it was exceptionally fitting that in the mail on Saturday, a large box arrived from my Virginia brother-in-law, with a Hanukkah gift—a tool I’d been needing for years.

Saul had visited us in October. While he was here, he noticed I was having trouble opening cans. It’s ridiculous, really. I know I’ve needed an electric can-opener for years, but just never got around to buying one.

Sure enough, when we opened the box, inside was a sleek, black-and-chrome electric can-opener with an easy-lift handle. I tried it out Sunday night. Voila! No more sore fingers from struggling with a manual can-opener, ergonomic design notwithstanding. The can of plum tomatoes turned quickly and quietly, the lid came off easily, and there was no messy blade to clean.

It’s amazing how this device has instantly made my life easier. Especially when I have intransigent ulcers, as I do right now, opening cans has become quite an ordeal. If my fingers slip, it’s extraordinarily painful. Sometimes I’ll turn the manual crank all the way around the can, only to have to repeat because the blade didn’t cut all the way through the metal lid. There have been many times I’ve had to use rubber gloves or a towel for extra padding on the handle, to be able to manipulate the can-opener. Sometimes I just can’t open the can at all, and I have to wait for Al to be available to help.

Why it took my brother-in-law’s thoughtful gesture to turn this around, I’m not sure. Sometimes you just get so immersed in the way you’ve always done something that it’s hard to muster the energy or awareness to fix it.

So, I repeat, in Dad’s memory: Any problem can be solved if you have the right tools. And I’ll add this caveat: It helps if you’re paying attention. Thank you, Saul.

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.

Time to Stop Typing

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I’ve been having trouble sleeping the past few nights. My finger ulcer keeps waking me up. Usually when this happens, I have an infection. But that’s not the case this time. The skin is just too raw on the tip of my right ring finger, but I need to type and do other tasks, and the ulcer keeps getting irritated.

Now, I should be grateful that, at least so far, I don’t need to start antibiotics. I hate taking them. But the good thing about infections, much as they hurt: antibiotics provide significant relief within about 48 hours.

My problem at present is that there’s no quick fix for this particular variant of ulcer pain. It’s like having a headache in my finger. The only cure is time.

Our fingers have an extremely dense concentration of nerve endings. According to a recent article in The Guardian, our fingers have so many nerve endings that our brains actually outsource some neural computations about object orientation and movement to our fingertips.

All of those nerve endings make it possible to distinguish a baby’s cheek from a scruffy beard, stovetop heat from freezer chill, a satin sheet from flannel. When you think about it, the range of our fingers’ neural intelligence is really quite astounding.

That neural density also accounts for why it hurts so damn much when we get a paper cut, or smash our thumbs with a hammer. . .or develop digital ulcers.

The only encouragement I feel right now is that I’ve had two other recalcitrant ulcers in the past few weeks that gave me the same trouble, which are now, thankfully, past the achey stage. I’ve noticed over the years that there is some kind of tipping point in the healing process, when my damaged skin cells seem to wake up and repair themselves in large enough numbers that the pain level recedes. This can happen overnight.

So I’m going to cut this short, give my sore finger a break, take some Ibuprofin and Tylenol (they work differently), redo my bandages, and—I hope—get some sleep. Maybe tonight’s the night my body will work its magic, once again.

Photo Credit: JonathanCohen via Compfight cc

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.