Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Crowning Glory

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At long last, ten months after I had to have a painful molar extracted, I finally have a full set of teeth. Nasty old 19, which nearly ruined a weekend vacation in New York City last May, has been replaced by an implant.

None of this has been fun. My scleroderma creates many complications for dental work, especially much difficulty opening my jaw wide enough for my dentists and hygienists to manipulate all the probes and pics and suction tubes and needles and pliers needed for the various steps in the process.

Despite the fact that the roots of my molar had resorbed to the point of exposing the nerve—a rare complication of scleroderma—pulling the damn thing out of my jaw was quite the ordeal last spring. My periodontist, whom I trust implicitly, had to drill it into pieces and extract it by segments, because the roots just didn’t want to let go.

After my gums healed up, the next step was a bone graft. Then setting in the foundation for the implant. All of this required long visits, a lot of Novocaine, and much pulling and stretching of my lips and cheeks, which don’t have much give. Plus months for my gums to heal, in-between. 

Finally, in February, I was ready to go back to my dentist and get impressions made for the crown. He, like my periodontist, understands how hard it is for me to keep my mouth open wide and is always as careful as can be, apologizing whenever I wince. But there’s just no getting around it—even when he uses the smallest tray for the impression or whatever, it hurts. I always feel like my lips or cheeks are about to tear.

Last week, my new 19 arrived. I went to the dentist Wednesday afternoon, looking forward to getting it over with, at last, and being able to chew thoroughly once again—without taking twice as long as normal (which is long enough already) to eat a meal. My dentist tested the placement three times, made adjustments and set in the molar. But when the cement dried, it had settled too close to the next tooth, so he had to jigger it a bit so a piece of floss would pass between the two teeth.

When I left, I noticed a crunching sound inside the molar when I bit down, but I told myself it was okay. I enjoyed chewing a piece of gum—on both sides of my mouth—on the drive home. But by evening, it was clear that the crown was loose. I could click it with my tongue. Saliva was pooling under the base. The left side of my tongue was really sore from all the poking and prodding earlier that day.

So on Friday, I made another 80 mile round trip, back to my dentist, to have the crown reset. I was frustrated, but there was no point in getting angry about it. I can’t open wide, and that makes it much harder for my dentists, no matter how good they are, to do what needs to be done.

Fortunately, this time, the procedure was successful. Ninenteen is now firmly in place. My tongue has healed up from the second round of poking and prodding, and my inner cheek has gotten used to feeling a tooth instead of a gap. I’m still relearning how to chew on the left side. I can’t sense food through the crown the way I can with a real tooth, so it’s taking some practice.

We’re still catching up with all of the dental bills, too. Insurance only covered about a fourth of the $7,500 total—better than nothing, certainly, but still. Talk about sticker shock.

But I can chew again. You don’t realize how important each tooth is until you lose one. Missing that molar has increased the risk of gagging on food, which happened far too many times over the past ten months. I’m grateful that I have excellent care, that I’m able to work my schedule around all these appointments, and that we’re managing to pay for it. There will undoubtedly be another tooth that needs replacing at some point in the future, but, with any luck, it won’t be any time soon.

Meanwhile, pass me the biscotti.

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.

Photo Credit: Kitchen Wench via Compfight cc

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.

A Little Night Music

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It’s really cold here, nine degrees on Monday night. Our street is a sheet of ice following a relatively warm day on Sunday—above freezing, WOW—when the snow that fell overnight melted and then refroze as temperatures dropped.

photoBut Saturday night, despite more snow, Al and I made it to a concert of Latin chamber music at Clark University performed by the Worcester Chamber Music Society, featuring Argentine guest soloist JP Jofre, a world class artist on the bandoneón, a type of concertina.

There is no better antidote to yet more snow than hearing the tango on the bandoneón.

When we got home, I decided to take a walk around the block. It was snowing gently, and the temperatures were just below freezing, so it felt relatively mild, even for me. The fresh snow coated all the dirty drifts that have narrowed our roads to nearly one way and freshened the landscape, transforming tree boughs to white lace.

I had the street all to myself. It was quiet and peaceful. Ginger would have loved it.

This winter will eventually come to an end. A week from Sunday, March 8, we switch to Daylight Savings Time and it will be lighter in the evening. The snow will melt (maybe by June).

So, to nudge things along and give you a little break from your own winter doldrums, here’s a video of Jofre performing Ástor Piazzolla’s Escualo with the JP Jofre Hard Tango Chamber Band at NYC’s Le Poisson Rouge in September, 2012. Tango, anyone?

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

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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

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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.