Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

Reprieve

· · Leave a Comment

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.

Another Year Older

· · 2 Comments

I had a wonderful teacher in the first grade. Her name was Miss Kelly, and she had short, curly dark hair, a wide oval face and a big smile. She also seemed quite tall, although I wasn’t a reliable judge of height at that age. And she created fun class plays.

Crane BeachThat year, we performed what would now be described as karaoke. Picture a group of six-year-olds singing and pantomiming on stage to musical hits, circa early Mad Men, and you get the idea. (“How come everyone is laughing?” I remember wondering during our performance.)

I haven’t thought of that first grade play in years, but for the past couple of days, one of our songs arose, unbidden, from the recesses of my gray matter and has been cycling through my head—Sixteen Tons, sung by Tennessee Ernie Ford.

You load sixteen tons, what do you get
Another day older and deeper in debt. . . .

It was my birthday on Saturday. Fortunately, the debt part isn’t what brought the song to mind. But another day older is how I felt, for better or worse.

“Are you excited for your birthday?” Mindi asked me a few days before.

“I don’t know. I guess so,” I replied. After turning 60 last year, 61 seems a bit anti-climactic. And there’s something about adding the 1 to the 60 that tipped the scales toward the “older” side of the equation.

When the day arrived, however, I was in a great mood. Something magical always happens to me on my birthday, a feeling that the day is different, special, blessed. The weather was perfect—70s, sunny, azure sky. Flowers that had been hiding for months suddenly dotted lawns up and down our street. On my walk back from Shabbat services at our synagogue, I noticed violets, always a spring favorite.

That evening, to celebrate my birthday, Al and I drove to a dinner concert in a small town in northern Worcester County, at a restaurant venue that draws class acts from around the country. The show did not disappoint: Michael Allman, son of Gregg, performed amazing R&B and Allman Brothers’ classics with Charles Neville of the Neville Brothers on tenor sax and Jeff Pitchell, an outstanding blues guitarist. I was transported back to my freshman year of college, when Sweet Melissa, Midnight Rider and Whipping Post blasted from stereos in every dorm.

Continuing my birthday weekend the next day, after brunch with friends, we drove an hour-and-a-half to the North Shore, to Crane Beach, beautifully maintained by the Trustees of Reservations, a great conservation organization here in Massachusetts. It was chilly, the water was a deep blue and the air, crisp. But I’d forgotten my hiking shoes in our haste to leave, I should have brought an even warmer coat than the one I had, and the latrines were—well, gross is an understatement.

So I was pretty cranky as we set out on our beach walk. I love the beach in any weather, but I couldn’t appreciate it, at first. After grousing to Al as we walked a ways, I plopped down on the sand while he explored closer to the water (he, of course, was quite comfortable walking barefoot while I was all bundled up and still chilly) and lay back to absorb some sunshine.

The break helped lighten my mood. Soon I was exploring patterns in the rocks and the soft shadows left by footprints in the sand. I took some pictures. Al strolled ahead to inspect what was beyond the next curve in the shoreline. We passed other spring beach-lovers, some in winter jackets and walking shoes, others in shorts and flip-flops. I drew my layers closer to ward off the stiff breeze and kept on walking.

Crane Beach EstateAl noticed a path leading up the side of the dunes, with a boardwalk. At first, I was hesitant to climb, but curiosity got the better of me, so up we went.

Well worth the effort, as the path led to a grassy expanse overlooking the ocean—blue and green and tinged with beige above sandbars—and a nearby island. When we turned around, we realized that this was the view at the bottom of a sweeping lawn that extended from the hilltop Crane Estate, part of the Trustees of Reservations property.

As we hiked back down to the shore, I began to feel a bit tired. The wind was still stiff, and we had to walk into the breeze all the way back. By the time we finally reached the boardwalks leading to the parking lot, I was really dragging. We made a brief stop at an antiques store (overpriced) on our drive through a nearby town, then found a local restaurant a few blocks away for dinner.

Waiting for our meal, I was quite weary. “Are you okay?” Al asked. “I think so,” I said, though I wasn’t really sure. I was worried. Here we had just walked the beach for a few hours, and I was totally spent. We’re planning a trip to Europe this summer, with an aggressive travel itinerary, and all I could think of was—how am I going to keep up with what I want to see and do?

The meal revived me, though I could only drive half the distance home, and had to trade off with Al after we got on the Mass Pike. “I’m feeling my age,” I told him.

It wasn’t until later that night, after I had showered and gotten ready for bed, that a light bulb went off in my head: It’s hard to walk in sand. It takes a lot of extra energy, especially when you’re wearing the wrong shoes. And it was cold out, and it’s even more tiring for me to walk into a chilly headwind. Yes. Indeed.

So I stopped catastrophizing about our trip, at least for now. I do have to pace myself when I’m physically active. That’s the bottom line. But I can do it. I have to believe that.

In our first grade class play, the one other song I remember singing was I Whistle a Happy Tune from The King and I. We each had a partner, and we took turns singing and trying to whistle along to the music. I’m sure we looked adorably hilarious for all the parents in the audience, but I took it all quite seriously, as only a six-year-old can: 

Make believe you’re brave
And the trick will take you far
You may be as brave
As you make believe you are . . .

Yes. Indeed.

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

· · 2 Comments

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.

A Dog’s Life

· · 18 Comments

Last week, on Friday the 13th, we lost our wonderful Ginger. At 16 ½, she had outlived the average Golden Retriever by almost five years. But still, her end came too soon.

It all started when Mindi wrote a grade school report about Goldens. After our first dog died in 1998, she was adamant that if we ever got another, it had to be this breed. About a year later, we began our search, and in October of 2000, we learned of a family that was looking to sell a two-year old, pedigreed Golden.

As Al arrived at the owners’ home, he noticed an electric company truck in their drive. It turned out that the family was behind in their utility payments and about to have their power shut off. So he went to the bank, withdrew $200 to pay their bill and got Ginger in exchange. She jumped in his car and never looked back. That afternoon, Al greeted Mindi and Emily after school with Ginger in tow. At first, they thought he was just holding her for another parent. Needless to say, they were ecstatic to learn she was our new pet.

Neglected by her owners, ten pounds underweight, loaded with fleas (we soon discovered), never spayed, she needed a lot of love and attention. She took refuge under the kitchen table, and that’s where we placed her new bed. But she often liked to sleep on the hardwood floor, perhaps because that’s all she knew before coming to us.

At first, Ginger didn’t have quite enough energy to walk all the way around the block. But as she put on weight and gained strength, she gleamed and grinned. And, despite the former owners’ claim that she would swipe the baby’s meal, she never stole food.

In fact, she never stole anything that I can recall. She never climbed on the dining room table to snarf up a pound cake, like my childhood beagle, Snoopy, nor snatched socks and tissues, like our first dog, Sukki. She never snapped at us, only at dogs that got in her space. She only ran away once, chasing after a skunk on a frigid January night. When Al found her and brought her home, she reeked as she galloped around the house. I don’t recall how many baths it took to remove the scent.

Simply put, Ginger was just a love bug. Hugs and ear-scratches and snuggles were her ambrosia. She adored company and was totally oblivious to social cues from anyone who was skittish around dogs. Any resistance to her sweet face just encouraged her to persist until she got a pat on the head.

The squirrels always got away (thank goodness she never brought dead animals to our door), but she loved the woods. She would race back and forth between Al and me as we hiked, making sure we were both there, then wander a ways to sniff and explore. Her fur, such a beautiful russet, always blended with the fall foliage.

For the past five years, after I was laid off and began my consultancy at home, she was my constant companion. By this time in her life, she had mellowed considerably and was content to sleep, curled up under my desk or next to me in my office as I worked. But come 2:30 in the afternoon, somehow her internal clock would always go off and she would rise to nudge me for a walk, often nosing my hands off the keyboard to get me going. A good thing, for both of us. Those walks always cleared my head and gave us quality time together. I even finally taught her how to heel and not chase other dogs that passed us. Who says you can’t teach an old dog new tricks?

Most of all, she was a loving, comforting presence. We had our own way of communicating. She would let me know what she needed by pacing to and from the desired object—her water bowl, the back door, the kitchen to remind me it was time for pills (in ricotta cheese, of course), the back door again. Whenever I came home, she would always be there to greet me. And whenever I offered a walk, she was ready to go. On Shabbat afternoons, she would curl up nearby while I napped on the couch, and, sometimes, she could still climb up to cuddle next to me.

A hardy girl, she was beloved by her vet, who called Ginger her favorite Golden and always remarked on how she still had such “pep in her step.” But by last year, she was finally beginning to show her age. Arthritis, thyroid issues, weakened sight, loss of hearing in her right ear, lessened smell, confusion—all took their toll. Two weeks ago, she began to have trouble keeping down any food, and after a blood panel, we learned that her liver was failing. I thought she was rallying with medication and new bland food that she loved, but that was wishful thinking.

On Friday, I was writing at the kitchen table before going to the vet for some more anti-nausea meds. I got up to put on my coat and began telling her I’d be back soon, thinking I had let her back inside from her morning rituals, only to realize she wasn’t there. I called for her and looked all over the house, upstairs, the basement, out back, out front, in a total panic. It was as if she had vanished. Finally I clambered through the deep snow in the back yard, following the path she’d carved for herself in the drifts, and found her, collapsed. She was hemorrhaging. Blood stained the snow by her muzzle.

I stumbled back through the snow to get her a blanket, then called Al in hysterics. Thank goodness he could come home from work, because there was no way I could lift her and my fingers were going painfully numb in the frigid weather. He carried her to the car and we took her to the vet, but we knew it was over. She died, peacefully, in loving hands.

Of all the things I learned from Ginger, here’s what I will remember most: Live each moment fully. Be sure to take a nice, long stretch when you wake up. Ask for what you need. Find the good in everyone. And remember that whatever is troubling you, love is the strongest force in the Universe.

Rest in peace, Ginger. You are forever in our hearts.

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

· · 4 Comments

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.