Speak for Yourself

"Cat and Mouse" (1975) by Robert A. Nelson, on exhibit at the Worcester Art MuseumOne evening last week, during a seemingly endless stretch of hot, muggy days, I was reading at the dining room table with the widows wide open when I heard a cat crying outside.

Our neighbors have two cats, and they often prowl around our back yard now that Ginger is gone. I looked out the window and saw the yellow tabby curled contentedly in their upstairs window, enjoying the meager breeze, silent.

Mrroww, mrroww, mrowww, cried the mystery cat.

Where could it be? This didn’t sound like your ordinary cat commentary. I went out the kitchen door and looked around. No cat.

Mrroww, mrroww, mrowww, cried the mystery cat.

I walked up the path to our front drive. No cat. I walked back to the kitchen door. No cat.

Mrroww, mrroww, mrowww, cried the mystery cat.

Then I realized that the cry seemed to be coming from our garage. I opened the back door. There was our neighbor’s white cat, hiding among my older daughter’s furniture, in storage until she moves to a new apartment in September.

It did not take much to coax the cat out of its self-imposed prison. I have absolutely no idea how it got in, since I’m not parking in the garage while the furniture is there. A mystery, indeed.

The cat ran back home, and I was quite thankful that I’d been around to hear its cry.

So, you may wonder, what does this have to do with living with scleroderma? Well, Dear Reader, it’s all about speaking out when you need help. That kitty knew how to get attention (how long it waited to complain, I have no idea—it probably snuck inside somehow to escape the heat) and kept asking for attention until someone paid attention.

Speaking up for yourself when you need help, without any shame or embarrassment, is a crucial skill when you live with any kind of disability, including the physical limitations that are part and parcel of scleroderma. In this Sunday’s New York Times, Rosemarie Garland Thomson articulates it beautifully in her essay, “Becoming Disabled”:

As we manage our bodies in environments not built for them, the social barriers can sometimes be more awkward than the physical ones. Confused responses to racial or gender categories can provoke the question “What are you?” Whereas disability interrogations are “What’s wrong with you?” Before I learned about disability rights and disability pride, which I came to by way of the women’s movement, I always squirmed out a shame-filled, “I was born this way.” Now I’m likely to begin one of these uncomfortable encounters with, “And these are the accommodations I need.” This is a claim to inclusion and right to access resources. . . .

Becoming disabled demands learning how to live effectively as a person with disabilities, not just living as a disabled person trying to become nondisabled. It also demands the awareness and cooperation of others who don’t experience these challenges. Becoming disabled means moving from isolation to community, from ignorance to knowledge about who we are, from exclusion to access, and from shame to pride.

Unlike Garland Thomson, I wasn’t born with my disabilities. I can still remember what it felt like (barely, it’s been so many decades) to have fully functioning hands. It’s taken me many years of living with scleroderma to assert myself with strangers when I need help. But I’m no longer afraid or ashamed to ask. Much as I want to do for myself, I also realize my limitations. It’s good to know, more often than not, there’s someone willing to open that door, pop that tab on a soda can, or hoist that carry-on bag to the overhead luggage rack—who’s glad to be of assistance.

If a cat knows how to get the help it needs, when it needs it, then surely, so can I.

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: “Cat and Mouse” (1975) by Robert A. Nelson, on exhibit at the Worcester Art Museum

Gold Standard

All those perfect bodies. It’s impossible to watch the Olympics without marveling. Sculpted muscles, tight abs, toned thighs—these premier athletes look every bit like the marble statues we saw everywhere in Italy this summer—except, of course, they are living, breathing humans who accomplish seemingly superhuman feats of strength, coordination, balance, speed, grace.

the-athlet-1423333-640x480The Summer Olympics, especially, always set me daydreaming—what would it have been like if I’d had the ability and training to compete as a gymnast when I was that young and healthy? What does it feel like to be Simone Biles, dancing, bounding and twirling through the air, always landing soundly on her feet?

The gold medalists, especially those who’ve distinguished themselves as Biles has in gymnastics with her extraordinary athletic prowess, are walking Rorschach tests for our imaginations—as well as our biases.

There has been plenty of press regarding the ignorant comments by NBC sportscaster Al Trautwig about Biles’s parents—her biological grandparents, who adopted Simone and her sister when they were very young. “They may be mom and dad but they are NOT her parents,” he tweeted last Sunday. Those comments raised a huge furor, rightly so. As an adoptive parent of our older daughter, I found the initial reporting offensive and appalling. I was very glad that Trautwig not only retracted his statements eventually, but also apologized. Shared DNA is not the defining ingredient of parenthood.

But there is another bias projected onto Biles that has not been flagged—and that involves how she is described in terms of height. Like many female gymnasts, Simone Biles is petite. She stands 4-feet-8-inches tall.

For some reason, however, the sportscasters are compelled to describe her as a “4-foot-8-inch giant.” This is intended as high praise—small in stature, but a huge presence. I get it.

However, my younger daughter stands 4-feet-7-inches tall, and over many years, we have discussed the challenges of living in a society that tends to be dismissive of individuals who are shorter than average. Short stature is associated with being childlike, being “cute” (as in not taken seriously), being less capable of leadership. It’s an insidious stereotype that has no more to do with what an individual is capable of than the color of her skin, religion, gender identity, physical limitations or any other distinguishing characteristic.

By describing Biles as a giant, the sports world is underscoring the perceived irony of such a small woman looming so large over other gymnasts. The implied assumption: better-than equals bigger-than. But why isn’t it enough for Simone Biles to be the world’s greatest female gymnast—period? Why does her height have to figure into her sobriquet? Does anyone dwell on swimmer Michael Phelps’s height when describing his amazing 23 gold medal record? Of course not. He’s 6-feet-4-inches tall.

The Olympics are all about achieving athletic perfection. Wouldn’t it be wonderful if those who set the bar for how we talk about these breathtaking accomplishments strived to set a gold-medal standard for appreciating the precious uniqueness of each individual—rather than marveling at how they’ve defied expectations based on stereotypes. Imagine how that might shift dialogue and perception far beyond two weeks every other Olympic year.

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: Oliver Gruener

Forgetful

It was 9:30 this morning when I suddenly realized that I’d forgotten to write my blog for today. This has only happened a few times in the four-and-a-half years that I’ve been posting, and those other times, I caught it earlier in the morning so there was no apparent lapse.

I’m getting older. And memory lapses are becoming more frequent.

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I’m well past the stage when it felt novel to walk into a room and not recall what I was trying to find. The only reason I can locate my keys before I leave the house is that I force myself to put them in my purse or on the kitchen table when I come home—and I don’t always remember to do so.

Last Friday I went grocery shopping and wandered around the parking lot for what felt like a good 10 minutes before I located my car. For a fleeting few seconds, I wondered if it had been stolen.

I’m getting worse at recalling names—occasionally, even of people I know well. It’s as if a curtain goes down in my brain, hiding the information. The more I strain to remember so as not to embarrass myself, the thicker the curtain becomes. Over the weekend I read an article that explained why our brains aren’t wired to remember names as well as faces—which provided some relief, or, at least, a good excuse.

Amidst the flurry of preparations for our recent trip to Italy, I tried doing a load of laundry and was completely bewildered by the fact that our reliable washing machine refused to start properly. Why? Because I was pushing the power button instead of the start button. (This I figured out after I read the trouble-shooting section of the user manual, which, fortunately, I keep on top of the washer.)

Then there is the challenge of taking all my medications on time. I know, I know, I should use a pill minder. I hate them. I don’t know why. Maybe because they are a reminder that I can’t remember. It’s an act of defiance (or sheer ego) to take my pills morning and night without having to rely on some device other than my brain. But there have been far too many times when I can’t recall if I took them or not, and I realize, much as I don’t want to admit it, that timely medications are too important to mess with.

I was discussing this with a friend last week who is also in his early 60s, and we agreed that the real issue is too much multitasking. I forget when I’m not paying attention—to where I left my keys or parked my car, or how many cups of flour I poured into the food processor to start the bread dough, or whether I actually told Al about my schedule or just thought about it, or when I took my pills. So much of the time, I’m doing one task on autopilot while my mind is in a totally different space.

There are apps for that, of course. We can do a lot more these days because we can offload so much to our smartphones—medication reminders, parked car locators, key finders and more. But that requires remembering where the smartphone is. (Try calling it when you’ve forgotten that you left it on silent from the night before.)

The only lasting answer: Slow down, do one thing at a time, be mindful. And, above all, accept the fact that aging is inevitable.

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: Szilard Gabor Fulop

Immersion

Could it really be that Al and I were in Pisa, Italy, on Sunday? And in Venice, Florence and the Isle of Elba over the preceding two-and-a-half weeks? Air travel makes it possible to be halfway around the world in the morning and back home late the same night (depending on which direction you’re traveling). But my mind is somewhere in-between. And I want to hold onto the memories of our journey for as long as I can.

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Venice has been a lifelong dream—ever since my father showed me a series of small, black-and-white photos of the canals from his military service in Italy during World War II. Those images made a big impression on me as a little girl. So much so that in first grade, when I had to answer a test question, “True or False, All cities have streets,” I marked it false. My teacher, Miss Kelly, called me up to her desk and asked me why. I explained that Venice has canals. She laughed, and she didn’t mark my answer wrong.

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Whatever I imagined as a child, however, could not compare to the wonder of Venice—a magic puzzle box of winding pedestrian passageways, bridges and canals. Around each corner is yet another stunning, surprising view. We heard jazz and Vivaldi, saw fireworks and Kandinsky, ate delicious meals, drank wonderful wines, and continually got lost and found. We stayed six days, and it wasn’t enough.

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For four days in Florence, we marveled at art, ancient to modern. I could have stared at Botticelli’s The Birth of Venus for hours, were it not for the crowds in the Uffizi—for all the images I’ve seen, and the memes, there is nothing like witnessing a major art work in person. Michelangelo’s David, too, is breathtaking. So is the view of the city and Tuscan hills from Forte di Belevedere, across the Arno, and so much more.

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Our final stop, Pisa, has also been a source of intrigue since childhood. My sister and I had a wall map of the ancient world when we were young, which included a small drawing of the Leaning Tower to indicate where Pisa is located in Italy. How could a building lean like that and still stand? I wondered.

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Well, now I’ve seen it with my own eyes. It does lean and stay standing (thanks to some extraordinary feats of engineering), and the architecture is exquisite. There is much more to the city, of course, which is full of surprises—from the serene Botanical Garden of the University of Pisa to an exhibition of book illustrations by Roberto Innocenti at the Palazzo Blu.

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But our favorite adventure was our four days on Elba, an island off the west coast of Italy, part of the Tuscan Archipelago. Truly, one of the most, if not the most beautiful place I have ever seen. Panoramic mountain views overlooking azure seas, crystal clear water, beautiful hiking trails, salmon sunsets. It was a vacation in the midst of our vacation—calming, quiet, a time to get away from the crowds and contemplate.  

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And, best of all, I went swimming in the Mediterranean—the first time I have been able to swim in at least a decade. The water was warm and so clear and clean that, for once, I was not worried about risking an infection in my fingers. Indeed, the salt water seemed actually to help my ulcers to heal.

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All of this, plus the fact that I was able to tolerate the long plane rides, walk and walk in intense heat (high 90s most of the trip), eat new foods, get enough sleep most nights, and avoid any scleroderma complications—all of this, on top of being able to swing the trip in the first place, was a great gift.

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I’m glad to be back home, where the scenery is familiar. I know where to find just about everything in our house. Family and friends are close by. It was very good to sleep in our own bed once again. But there is so much more of the world to see. As long as we both are healthy enough and able, we hope to keep on traveling. My “Next Trip” list is already in the works.

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.

Vacation Override

It’s been a very busy few weeks since the beginning of July. Al and I leave soon for our first-ever trip to Italy, and to prepare, I’ve been drilling through a month’s work of client projects in 10 days. Usually I pace myself very carefully and keep most evenings and weekends free of work—to manage my energy and keep a good work-life balance. But freelancers don’t get paid vacations, so late hours were necessary to make sure I met my clients’ needs and our family budget for the rest of July.

pills-1417417-639x462Now it’s done, and I have to concentrate on final trip preparations. (It’s probably been good to have had so much work to do—a distraction from inevitable nervousness about how I’ll hold up during a long haul trip.) Tops on the priority list is making sure I have enough of my prescription medication to last the journey.

Only one problem: the timing of my most recent refills works out to being a few pills short for when we’re out of the country. Three prescriptions were affected. So last Friday, I went to my pharmacy and asked what to do. They advised me to call my health plan’s pharmacy and ask about a vacation override. Since we would be abroad, there was a good chance I could get the refills authorized.

Monday morning I called CVS Caremark and explained the situation. The helpful person on the other end of the line told me to submit the refills at the pharmacy, which would be rejected as a premature request, and then have the pharmacy call them for the override, which, fortunately, our plan covers. So after I finally finished all my work, I went down to my local CVS on Monday afternoon.

And here’s where the situation got complicated. Two of the three scrips got through the process without a hitch. But a third hit a snag. For whatever reason, the insurer suddenly decided I needed a prior authorization for this particular medication, not only to get the vacation override, but also to get any refill for a med I’ve had authorized for years. It made absolutely no sense.

But this is how health insurance works these days.

So back home I went and wrote an email to my BMC rheumatologist’s nurse who handles refills and rescued me from yet another refill emergency last week—when I tried to refill an essential medication, I was suddenly told that I was correct that refills remained on the scrip, but, unbeknownst to me, despite checking last month, the scrip had expired. Unbelievable. She worked her magic and the prescription was on its way from a specialty pharmacy that afternoon. It arrived on time on Saturday.

No way to know if we’ll be able to get through the prior authorization process for this med before we leave, but if anyone can make it happen, she can. And if it takes longer than I can wait, I’ll just have to skip a few doses every other day at the end of the trip. Certainly not ideal, but not life threatening, either. Fortunately. This is a pill that helps my hand circulation, but we’ll be in a warm climate, anyway.

Time to get packing. I’ll be taking a vacation from this blog for a few weeks, too. I wish you, Dear Reader, a lovely, restful deep summer (north of the equator—to those of you down under, I hope your winter isn’t harsh). Be well.

Image Credit: Cathy Kaplan

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.

Declaration of Independence

thomas-jefferson-2-1421207-639x601Now that the fireworks are over and the grills are stilled, school is out and vacations are in, I want to pause for a few minutes to consider the word at the center of all our July 4th festivities: independence.

Not the politically-charged nuances—that’s for another kind of blog. Rather, I’ve been thinking lately about what it means to be independent as an individual living with a disease that challenges your ability to do for yourself—and whether that really matters as much as it seems.

Independence is certainly central to our nation’s psyche. Our country was born by breaking away from colonial rule under a tyrannical king. The rugged individualist, the cowboy, the inventor, the explorer—these were America’s formative heroes.

Today the self-made entrepreneur, the start-up genius who becomes a multimillionaire is idolized. Star athletes, whose success depend on teammates, are singled out and lauded for exceptional skill; they may credit the team, but their own names become national brands. The mark of adulthood in our culture is making it “on your own.”

But what does that really mean? I’m as driven as the next American to be self-sufficient, to support myself and those I love, to get around on my own in my car, to manage my finances and run my own business.

And yet, none of that would be possible without many, many interconnected relationships with others. There is not one thing that I do all day that does not depend on some form of collaboration—from staying safe on the highway because others around me obey (mostly) the rules of the road, to taking my daily doses of medication because I’ve received good advice from my team of physicians and I can afford the drugs with my husband’s employee health insurance.

Unless you’re a survivalist or a hermit, being independent is really all about holding up your end of the bargain with all the other members of your family, friendship circle, community, nation—and, most broadly, the planet.

It does not mean doing everything yourself, without any help. It doesn’t mean not asking for help when you need it. Indeed, asking for help, which can make you feel childlike or weak or less-than in a culture that so prides itself on the appearance of self-sufficiency, is often an act of courage.

Here is how I think about independence, after more than three decades of living with scleroderma: It mean doing the best you can, within the breadth and limits of your own capabilities, while recognizing—no, honoring—your interdependent connections in the web of life. It means helping others when they need the support that only you can provide. It means standing up for yourself when you need to speak up—and speak out—to set things right, for yourself and others.

Our nation turned 240 years old on Monday. In these tumultuous times, each and every one of us is needed, each has something to offer for the greater good of all. The next time you know you must ask for help, go ahead—there will be more than enough opportunities to extend a hand in return.

Image Credit: Thad Zajdowicz

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.

Handy

When you live in a home long enough, stuff breaks. A doorknob loosens, a faucet drips, a burner element wears out on the stove, a toilet leaks, a chair leg cracks, a lock fails. The list is endless.

tools-1553469-640x480If you’re handy, fixing stuff around the house can be a satisfying hobby. If you’re not, it’s a cumulative nuisance. And if you can figure out how to fix it but your hands won’t cooperate, it’s truly irritating.

I used to have extraordinary fine motor coordination in my hands and could do just about any kind of detailed manipulations. I watched my father fix all kinds of objects around the house and build bookcases to hold thousands of tomes, and I imagined being able to do the same someday. But now that I have my own home, I can’t do the kinds of repairs that I wish I could because my hands simply won’t cooperate. Al, by his own admission, is not Mr. Fix-It.

So it was with great satisfaction that we finally found a handyman who can do just about any repair for a reasonable price. Our list has been growing for a long time, but the problem that finally drove us to seek him out was the ladder to the attic, which broke about a year ago, making it impossible to access our luggage. We are planning more travel in a few weeks, this time to Italy, and we needed to get up there.

And so, over the past few days, Marc has been fixing stuff: He replaced the ladder, fixed the impossible leaking toilet, repaired the drippy kitchen faucet and spray hose, reattached the spring on the outer front door that fell off the other day, wired a new front light, replaced some shakes that had been bored through by woodpeckers, and mended two broken chairs and the leg on our coffee table.

As these things go, nothing was as simple as it seemed. Bees were investigating the holes bored by the woodpeckers. The toilet needed several adjustments, as did the kitchen faucet. The attic ladder was a challenge because the original door had been built in the wrong place relative to the upstairs hallway and staircase. But Marc figured it out, spicing his efforts with some colorful language that reminded me of my dad’s cursing when things didn’t go right, and demonstrated an admirable ability to sort through the challenges and solve each one.

While he was working here on Monday, I was faced with a different kind of fix-it problem—trying to get the scanner on my printer to work again. I had an important document to scan, and the printer would create the image, but continually refused to save the file. I tried reinstalling the driver twice, only to have the same result. I groused to Marc, who cracked a sympathetic joke.

I was ready to give up and take the document to an office service store, when I took a break for a late lunch. Marc was up in the attic, adjusting the length of the new aluminum ladder after a particularly difficult battle with the old wooden one, which had twisted and tangled in its ancient spring. If he could persist and figure it out, so could I.

So I read through old printer documentation, tried a different way of getting into the scanner software, and—lo and behold, found the problem—a save option that had not been activated. The scanner worked. “I did it!” I shouted to Marc. He cheered.

I may not be able to do what Marc does with fixing stuff with my hands, but I sure learned a good lesson about persistent problem-solving. When he left Monday afternoon, he told me to start making “another little list.” I already have a few items noted down for after we get back.

Image Credit: Ciska Wesselius

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.

 

New Tricks

mr-fluffy-1358436-639x426In our back yard, a supposedly squirrel-proof bird feeder hangs on the trunk of a Norway maple. For the past year-and-a-half, it has confounded the squirrels. They’ve climbed all around it, certain it contains something good to eat. All that spilled seed near the tree’s roots must mean those birds are onto something, right? There just has to be a way to get some, too!

Then, last week, one wily squirrel finally cracked the code. Hanging down over the roof of the feeder, it managed to push down on the spring-loaded perch, swing around, climb up and sit on the ledge of the seed tray. There it curled its bushy gray tail into a question mark—You gotta problem with that?—and gobbled up black sunflower seeds.

I stepped outside to shoo it away, but in a short while, the squirrel was trying once again to remember the combination of acrobatic moves that had been so rewarding. No luck, at first. Next morning, I looked out the window and discovered it happily munching away again at the feeder.

At first, I was annoyed. But I was also impressed. That was one smart squirrel! Clearly, it was capable of learning from trial and error to get the reward—just like a lab rat learning how to push the right levers to get sugar water.

Since then, however, I haven’t noticed the wily squirrel at the feeder (which doesn’t mean it hasn’t been there). Birds continue to visit, so at least I know there’s still plenty of seed left.

Meanwhile, I’ve been learning some new tricks of my own, out of necessity, since my hand surgery a couple of weeks ago.

For years, I’ve been cutting bandages in half, the long way, for dressing my digital ulcers. I lap and contour them over my finger tips, then secure them in place with a full bandage wrapped around the finger. And I’ve always used a pair of cuticle scissors to cut the bandages. They’re small and sharp and light to handle.

But with my right hand out of commission for well over a week, I needed to recruit some help. My left hand just isn’t as coordinated, and I couldn’t cut the bandages. So I asked Al to do it for me. Another time, when he was at work, I asked Emily, who is home for the summer, for assistance.

Both followed my instructions—but both also inspired shortcuts that I had never considered. Al devised an easier way to cut the bandages—just shy of the peel-open end—so you can peel the wrapper and release both halves at the same time, instead of having to peel each half bandage separately.

Both Al and Em asked me why I insisted on using the cuticle scissors. I had to admit, they don’t cut a straight line very easily and can get stuck in the adhesive. Also, I realized, the reason I can’t use them right now is the holes in the handle are too small and press against my thumb sutures. So I fished out a spare pare of rubber-handled kitchen sheers from the junk drawer and tried them out. Voila! Easy, painless and quick way to cut my bandages in a snap, even with my healing right hand.

Which brings me back to the wily squirrel.

It’s so easy to get stuck in one way of doing things, even when the approach really is not working all that well. You can keep on looking at a problem the same way, circle round and round, trudge along. Or you can stand on your head and open your mind to a new perspective. Even if you’re not an acrobat—or a squirrel—the view is worth the effort.

Image Credit: Piotr Ciuchta

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.

Outlier

photoI am typing with three fingers on my right hand—middle, ring and pinky—and three on my left—ring, pinky and thumb. Usually, I use my right thumb as well. I actually had to stop and take attendance to figure this out just now, as I’m so used to compensating for digital ulcers that I automatically adjust how I type to which fingers are most healthy.

But my right thumb is out of commission for a few weeks, and my right ring finger, while occasionally useful at the moment, is also in need of a rest. Last Thursday, I finally had hand surgery to remove excess calcium deposits from both fingers that were interfering with my grip. Overall, I think it went well. I’ll know for certain next week, when I’ve healed more and the sutures are removed. I’m glad it’s over. I don’t want to repeat the experience any time soon.

The actual procedure went smoothly enough (despite our arriving nearly a half-hour late to the hospital’s ambulatory surgical suite, due to excessive rush hour traffic, which did not help my anxiety level that morning). Everyone was pleasant, informative and reassuring as they prepped me for surgery. I was glad to see my hand surgeon, who chatted with me as he marked my fingers with a purple felt tipped pen (“Yes” with an arrow pointing to the incision spot on each digit).

But there is a routine, auto-pilot aspect to the process that’s easy to succumb to (they must know what they’re doing, right?). Being assigned the role of patient—stripped down to a johnny and rubber grip socks, lying on a gurney, with your hair in a paper surgical cap and your glasses taken away—renders you more compliant. And vulnerable. In retrospect, I realize, from many years of dealing with the medical profession, regardless of setting or situation—I needed to be more assertive.

The IV nurse’s first attempt to insert a cannula in the back of my left hand was doomed to failure. I had warned her of my small, rolling veins—far too many experiences with IV antibiotics in past decades have rendered them hard to tap. But I didn’t think to stop her from trying, which I should have, because it really hurt and it didn’t work. Per normal, whenever I have blood drawn, the vein in the crook of my left arm was the right spot.

Next, the anesthesiologist came in to speak with me and asked me a bunch of questions about prior surgical experiences and my recent echocardiogram. But when I proceeded to give him a more detailed summary of the report, he dismissed me with the fact that he’d read it already (I certainly hope so, but then why ask the question?). At least he seemed to hear me when I said it takes me a very long time to metabolize anesthesia of any kind. “We’ll go on the lighter side,” he assured me.

The anesthesiology nurse was a bit more approachable and reassuring as he began the light sedative cocktail infusion that would help me relax during the procedure. As he pushed me into the OR, I was already starting to sink into a featherbed of valium. This was a good thing, and the addition of fentanyl made me quite comfortable (as comfortable as you can feel, under an extra layer of blankets because the OR is so cold—to keep the surgeons from overheating under all their gear, according to the anesthesiology nurse—when your head is being covered with a blue paper surgical drape and your hand that you can no longer see is being placed in some kind of protective sleeve and doused in chilly disinfectant). There was rock music playing—nothing I recognized, but good music, all the same.

Then came the local shots, which hurt like hell for far too many seconds—one in the fat pad beneath my thumb and the other, beneath my ring finger. The anesthesiology nurse was kind and comforting, standing by my left ear. Soon I felt nothing in my hand except odd pressure. One of the surgical team hummed to the music. I alternately closed my eyes and stared up at the surgical drape, which was perforated in the shape of tiny stars, as the team scraped out intractable globs of calcium, surrounded, my surgeon explained, by some abnormal cells that were essentially trying to encase the crud—like a tree closes off a wound. No wonder the stuff wouldn’t come out on its own.

Samples were sent off to pathology, and I was wheeled back to my berth. The whole procedure took about a half hour. Al was surprised to see me sitting up and drinking ginger ale when he was called back to my side. I was glad he was there.

I had hoped to see my surgeon again before leaving, but he was busy with other patients. His resident came by, instead. And here is where, once again, I found myself struggling to get my points across. I am allergic to oxycodone (Percoset). If I need a heavier pain killer, I take hydrocodone, the active ingredient in Vicodin. I thought I had some at home from a prior surgery, but didn’t recall. But he would not write the prescription. It wasn’t in their protocol. I don’t know if this is a reaction to the tighter restrictions on opiodes, but it made no sense. He wouldn’t budge.

In addition, I asked for a prescription of my most effective antibiotic. I had discussed this with my surgeon, who agreed it would be a “good idea” to start it when I got home as a preventive measure, given my propensity for infections. I had some left over from a previous infection, but not a full bottle. The resident informed me that research has shown antibiotics as a prophylactic neither help nor hurt, so he wouldn’t write the scrip.

“If it makes you sleep better at night, you can take what you have,” he said. In essence, he was telling me I was taking a placebo. I was really frustrated, but I was also exhausted and just wanted to go home. So I didn’t insist on seeing my surgeon and dropped it, knowing I could call my other docs and take care of it. The resident confidently told me that I would have minimal discomfort from the procedure and left.

As it turned out, it was a good thing I had some Vicodin that had not expired on hand. It took 18 hours for the local anesthesia to work its way out of my body—I could not assess the pain level before I went to bed that night, except for a glimmer of a warning of a problem in my thumb. I started the antibiotics and took one Vicodin before going to sleep.

By 5:00 a.m., I awoke with significant pain in my thumb. On a scale of 1 to 10, it was a 7. A second Vicodin didn’t really make much difference, because the pain train had already left the station. It took the entire day of alternating Tylenol and Ibuprofin, plus distracting myself, to get it fully under control without making myself too queasy from more Vicodin, even as the initial doses were essential to the whole mix. Al stayed home with me again, taking another day off from work, because I was so uncomfortable from the pain and woozy that I was afraid of falling. I missed the follow-up call from the hospital and decided not to return it. What were they going to tell me that I didn’t already know, better?

By Saturday, I was up and about, and a couple of days later, I’m back to almost normal, just managing the wounds. In a few weeks, I hope my right hand will be more functional. I’ve written this long entry, which is good progress.

But my experience reminds me that I have to be assertive, whatever medical setting I find myself in. There are times to listen and learn, and times to speak up and educate. Scleroderma does not fit neatly into a protocol. I am an outlier on the bell curve. The sooner those who seek to attend to my medical needs understand this, the better we’ll all be.

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.

Come Sail Away

Last Tuesday, I was living on a boat. A sailing yacht, to be specific, harbored in a marina in Oakland, California. We were on the West Coast this past Memorial Day weekend for my niece’s wedding, and Al and I had extended our stay by a few days to do some touring.

We found the boat through Air B&B, which has become my favorite resource for traveling. Forget hotels. You can find some really special places, save money and meet really interesting people.

IMG_0561For the first three days of our trip, we stayed in a lovely apartment in Oakland, not far from Jack London Square, a convenient BART stop and the ferry to San Francisco. That was a perfect location for getting to the wonderful wedding, which took place amidst a cathedral-like grove of redwoods at the UC Berkley Botanical Garden, Saturday night.

The next day, Al and I moved on to the sailboat, which had been lovingly restored by our host. A British expat, he had lived all around the world, ended up in Oakland by a series of events that started with not being able to bring a puppy back to England without quarantining his pet for six months, and eventually bought the boat from another sailor who had intended to take it on a worldwide journey, but had given up his dream when his marriage fell apart.

Our host showed us the before and after pictures—from a nicotine-stained, trash-filled (literally—tons of trash) hulk, he had transformed it to its current pristine state. The living quarters (I’m sure there’s a sailing term for it that I don’t know) are finished with teak. The sails are made of classic, brick-colored canvas.

The marina was very calm, and our floating home rocked gently. Al never noticed it, though I continued to feel the boat’s movement even when we were on dry land. But it didn’t bother me (contrary to my experience with whale watching back in April).

What struck me most about the boat, however, was how it forces you to be mindful—of space, of water use, of storage. Close quarters required me to step carefully. Once I learned the ship’s contours (and banged my shin a couple of times), I could get around and up and down the ladder to the deck quite easily.

I figured out all the wooden latches for the closets and the trick to opening the bureau drawers (all this was built into the walls), which, to my amazement, did not fight my fingers. I even learned how to take a hand-held shower in the little bathroom. And all three nights, we slept soundly in the cozy bed built into the cabin at the boat’s bow.

But the best part of our stay was the morning we chartered our floating home for a sail around the Bay with our host and a mate. Our host is a very experienced sailor, as well as a great conversationalist, and he was more than happy to answer all of my questions about the art of sailing, in-between raising and lowering the sails, tacking, coming about, and skillfully avoiding other boats whose pilots knew less about rules of the waterways.

As we neared the island of Alcatraz, the wind was stiff and the water quite choppy. But even as we got splashed, sailing at nearly a 45 degree angle, it was a treat. There is something magical about being powered only by the wind, gliding past a sea lion bobbing in the water as pelicans sail overhead.

Our host let us off at one of the piers along San Francisco’s waterfront, and we went on our way, exploring the city. When we returned to our sailboat later that evening, I felt like I was coming home to an old friend.

We were sorry to leave. The one consolation was our plan for July, when we venture to Italy for the first time. No boats for lodgings, but so long as we both stay healthy enough to travel, we’re ready for more adventures. Once the travel bug bites, there’s no turning back.

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.