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Reflections on the Messy Complexity of Chronicity

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Tale of the Tooth

Evelyn Herwitz · September 9, 2014 · 2 Comments

I hate going to the dentist.

It’s not that I don’t like the professionals who take care of my teeth. They are all wonderful, dedicated people. It’s just that there is no easy way for anyone with adult-sized fingers to maneuver around my teeth and gums without painfully stretching my mouth. The skin around my lips is simply too tight for me to open wide.

So, this past week, I was not looking forward to the visit to my periodontist for an implant—the second step of three to replace a molar lost this past spring to root resorption, a rare and very frustrating, painful complication of scleroderma.

This is the second time I’ve had to have a tooth replaced because the root resorbed. The last episode occurred maybe five years ago, and the tooth came out easily because most of the root had dissolved. But drilling to create room for the post was awful—I apparently have a dense jaw, a good thing. However, it took what felt like an hour to drill deeply and widely enough to accommodate the post. Even my periodontist remembered the ordeal.

I prepared for the appointment by shoving it out of my mind. Extracting the tooth back in the spring was no fun at all. It took more than an hour of drilling, breaking the molar into segments to get it out, long roots and all (the root had resorbed sideways into the nerve, rather than lengthwise).

Tuesday arrived, and I was even a few minutes early for my appointment. But construction work in my periodontist’s office building over the Labor Day weekend (so much for Labor Day) had left the practice with no running water when they arrived in the morning, and resolving that issue delayed all appointments. So I buried my nose in a fashion magazine as a distraction.

An hour later, it was finally my turn. Time to lie back, with my head lower than my feet, stare at the ceiling and await Novocaine. Always at this point in any dentist visit, when I know they have to stick needles in my gums, I have to focus on my breathing to manage my panic impulse.

Fortunately, they used a topical anaesthetic, first, which reminded me of Smith Brother’s cherry cough drops (used to love those as a kid, but no more). It dripped into the back of my throat, giving me the icky sensation of not quite being able to swallow, but it successfully numbed my gums enough to reduce the bee-sting pain of the Novocaine shots. Soon the slicing and drilling began.

This is where things got dicey. My periodontist is a real pro, and he understands the constraints of my mouth, but there is just no way to avoid pulling at the corners. Between the tools and the drill and the suction and probing fingers, I was stretched to the max, with no give. It hurt, even with Vasoline on my lips to ease the strain.

Mercifully, this time the drilling went more easily, and the whole procedure, from shots to stitches, took about an hour. I drove myself home, my mouth still very numb, walked in the door, got changed into comfortable clothes, swallowed a Vicodin, got an icepack for my jaw (even with Raynaud’s, this felt good, surprisingly), and lay down on the couch for the rest of the afternoon.

By the next day, I was able to manage the pain with just Tylenol and Ibuprofin. A week later, the swelling is virtually gone, most of my stitches have dissolved, and the gum is healing well. The tears at the corners of my mouth have healed, and I feel almost back to normal.

So, I’m grateful. The procedure is costing a small fortune, because our dental insurance barely approaches the total, but I’d rather have a molar than a gap in my jaw. I’m glad I can have an implant and a crown (that step will wait another three to four months for total healing) rather than dentures, which would be a nightmare with Sjogren’s dry mouth.

A few other teeth are resorbing, but I hope they will take their own sweet time. Meanwhile, much as I hate going to the dentist, I’m sure glad I went.

Photo Credit: purplemattfish 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.

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Filed Under: Body, Mind, Sight, Taste, Touch Tagged With: dental implants, tooth resorption

Enter Autumn

Evelyn Herwitz · September 2, 2014 · 2 Comments

The other day, as I was walking Ginger around the block, I heard a flock of Canada Geese honking overhead. I never saw them, but I envisioned them flying in V-formation, heading south.

August is over. I’m writing on the first day of September. Even though summer doesn’t officially end until later this month, Labor Day is always my turning point from the comfort of warm, long days of sunlight into the prospect of cooler, darker, busy fall.

Black-eyed Susans 9-1-14Sugar maple leaves are the first harbinger, speckling the sides of our street for the past few weeks with splashes of gold and tangerine. As the days grow shorter, the trees begin their annual rite of passage, hardening for winter. Today seems odd—it’s muggy, hot and very sunny. But the trees know better, what’s coming.

As I write, Emily and Al are packing a friend’s truck for the drive out to her new apartment. Grad school starts this week, both for her, as a first year master’s student, and for Mindi, entering her second and final year of her professional degree program. Closer to home, public schools began last week. Time, once again, to remember to avoid leaving the house mid-afternoon when school buses from nearby schools travel their routes.

I’ve spent much of my Labor Day weekend sewing. I’m nearly done with a new dress. But, of course, it’s a summery dress, not a fall outfit. For some reason, I am never able to sew ahead of the season. I bought the pattern in July. I’ve had the fabric, a beautiful fuchsia knit, for at least five years, purchased another summer with a different dress in mind.

Two weekends ago, I finally altered the pattern and cut out the pieces. I started sewing in the evenings, until our house was full with family, and I had to clear off the dining room table. So I dug in again yesterday, because I finally had time, and because I didn’t want the dress to wait another full year. I may still get some use out of it before the weather consistently cools off.

I am a slow sewer. I have to pace myself because of my hands, and I can’t manage the fabric as well as I once could, which is why I don’t sew often. Picking out seams when I mess up, which is more often than I’d like, is tricky and tedious. I’m more willing to live with mistakes that no one else will notice, given my limitations. The end result is still good enough, albeit not the perfection I’d prefer.

I would like to sew more. My favorite sewing magazine is full of luscious fall fabrics in autumnal hues. The dress pattern I’m using comes from a designer who creates lovely, easy-to-construct clothes. I hate shopping for ready-to-wear, and sewing is the perfect antidote—not only a way to create unique clothes that actually fit, but also a great meditation. Nonetheless, I have to respect my hands. And my energy. And the number of hours in the day.

Ahead lies a solid lineup of work and creative projects to take me well into the fall. Much as I love the summer months, it’s easier to concentrate as the weather cools and everyone else is back to work or school. The trees may shed their leaves and the geese fly south, the weather will inevitably make me long for warmer days and fewer layers, but I’m looking forward to the crisp crackle of new beginnings.

I just need to sew up that wonderful warm fabric I wove last winter into a jacket, before the days grow long again.

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: hands, mindfulness, sewing

To Treat or Not to Treat

Evelyn Herwitz · August 26, 2014 · 4 Comments

Ah, the gift of late August heat in New England. After a week that felt more like September, I’m glad to be back in sandals, at least for the next few days.

I’m also grateful for warmer weather that helps my ulcers to heal. A week ago Sunday, I awoke with pain in my left thumb that I hoped was just an inflammation. The pad of this finger has an intransigent spot of abnormal skin that occasionally gets thick and painful and usually responds well to careful debridement. But not this time.

My thumb was achey as I commenced a six-hour round-trip drive to bring Emily home from her summer job at her college alma mater, and the discomfort was just barely manageable with over-the-counter painkillers that wouldn’t make me drowsy. I suspected an infection. But when I finally got home and took a closer look, I didn’t see any obvious symptoms. No foul odor. No oozing puss. No extreme redness. Maybe topical antibiotics, just to be safe, would do the trick overnight?

I hate starting oral antibiotics, even as I’m grateful always to have some available at home, thanks to a team of physicians who know me well enough to trust my judgment and my follow-up reporting. This is a privilege of living in a wealthy Western country with good health care (despite all the political wrangling). I am very much aware of the risks of unnecessarily treating with antibiotics—the evolution of antibiotic-resistant strains of bacteria—and that threat frightens me, since I’m so susceptible to infections.

So, I waited overnight to see if a more modest approach would work. It did not. Too early on Monday morning, I was roused by severe pain in my thumb. It had swollen just enough to feel trapped in too-snug skin. Basically, it felt like my thumb was stuck in a car door. That, or the stabbing sensation of an intermittent electric shock or an ice pick are the sure signs of a bacterial infection in one of my fingers.

Time to double-up on antibiotics—one pill for the morning, and one for the dose I should have taken the night before. Then I cut a Vicodin in half and swallowed that, too. I also hate, absolutely hate narcotic pain meds, because they make me feel like a space cadet, but sometimes there is just no other way to deal.

It took me a good 48 hours on the antibiotics to dispense with the Vicodin, and another day for the now obvious infection to begin to clear. Today, a week later, my thumb is healing well, along with my other three digital ulcers of the moment, which always clear up when I’m on oral antibiotics.

Thank goodness. But will it always be so?

In his 8-25-14 financial column in The New Yorker, James Surowiecki writes a clear and compelling analysis of why Big Pharma doesn’t invest in new drugs that don’t make a profit.

This is relevant in light of the Ebola crisis in West Africa—“Diseases that mostly affect poor people in poor countries aren’t a research priority, because it’s unlikely that those markets will ever produce a decent return” on R&D, writes Surowiecki—as well as the reason why there is so little research into new antibiotics to treat resistant strains of bacteria.

The reason for the lack of investment in discovering better antibiotics, Surowiecki explains, isn’t for lack of awareness of future need. It’s “the business model. If a drug company did invent a powerful new antibiotic, we wouldn’t want it to be widely prescribed, because the goal would be to delay resistance.” With the prospect of limited sales, Big Pharma doesn’t want to make the investment.

What’s the solution? Surowiecki floats the idea of prizes for new drugs that have a public health benefit. The idea isn’t new: government-funded incentives for innovative solutions have been used for centuries and have become common in recent decades. They are only awarded if the idea works. They help to correct market forces that work to the detriment of the public good.

So why haven’t we started down this path, already? Huge up-front costs. Surowiecki notes that “a recent report commissioned by the F.D.A. estimated that it would cost a billion dollars to get a great new antibiotic, factoring in tax credits.”

To put this in perspective, that’s equivalent to the cost of about 200 Predator Drones.

I hope and pray, before the inevitable crisis hits, that our government can stop the political infighting long enough to get its priorities straight and make a serious investment in the future of public health, both here and abroad.

God-willing, this will happen long before that bottle of antibiotics in my medicine drawer no longer provides relatively quick treatment and relief from an infection that could all too easily get out of hand.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: antibiotics, finger ulcers, managing chronic disease

One More Thing

Evelyn Herwitz · August 5, 2014 · Leave a Comment

As my family well knows, I have a bad habit of trying to squeeze in as many items on my to-do list as possible before I head out the door. I get a lot done, but all too often I run late—not horribly late, and I manage to make most appointments on time, but when the deadline is less rigid, I can slide five, ten minutes behind.

The problem is that everything usually works out fine, anyway, which just reinforces my obsession with getting that One More Thing done.

Except for Monday morning, when I had to catch a train to Boston to catch the bus to Logan for a flight to Kansas City on business. (Fortunately, this has a happy ending, but this once again reinforces my bad habit, as you’ll see.)

I was well organized for my trip when I got up, relatively on time (mornings are always hard, as my body is sluggish). My bag was 99 percent packed. Did my exercises. So far, so good. Stopped myself from catching up on news and Facebook, so I wouldn’t waste precious minutes.

Then came the fateful decision to do One More Thing. I had a family project I wanted to finish before leaving the house, which I needed to complete online from our secure network, that I felt couldn’t wait until my return from my business trip later this week. It took about 15 minutes. I had just barely enough time to eat breakfast, finish packing, get dressed and race out the door with Al to get to the train station.

Challenging under even the best of circumstances. But I was also upset with myself, because in the midst of finishing my One More Thing project, I thought I’d messed up the online form because I was rushing and couldn’t backtrack. As I finished shoving the last few items into my suitcase, my hands started shaking. This always happens when I hurry and get stressed. Totally involuntary and very frustrating—my coordination just gets worse.

So I ranted to Al all the way to the train. Fortunately, he is very calm when I freak out. As we drove up to the station, I could see the train waiting at the platform. I jumped out of the car, Al grabbed my bag from the trunk, we said a quick goodbye, and I ran as best I could toward the platform . . . only to watch the train pull away. As one of the conductors, standing on a coach staircase, slid by me, he shook his head and shrugged. Just another late, would-be passenger.

At this point, I started crying. There are many things in this world worth crying about, and this wasn’t one of them, but I was just so frustrated with myself. Al to the rescue (fortunately, he had waited to be sure I got on) with a big hug. Rather than go home and come back in two hours to catch the next train, which would have risked a tight rush to the airport, he drove me in to Logan.

Now, here’s where my One More Thing habit gets reinforced. The ride into town had the advantage of saving my hands from dragging my carry-on from train through South Station to bus to airport. We said a real good-bye when Al dropped me off. I made it through security in 10 minutes, bought a bagel and found a table where I could write before every space was taken later in the morning. And, to top it off, I found out through an email exchange about my One More Thing project that I’d completed the online form correctly, after all. No problem!

Next time I miss a train because I’m trying to do too much, I still hope my loving husband will take pity on me once again and save the day. But I honestly don’t want to cut it so close to the wire, for myself (too much stress) or for him. (Hear that, Al? Thanks again! Love you!)

It’s comforting to know that life usually works out, even when you think you’ve messed up. But it’s also good to remember that One More Thing can usually wait. (Hear that, me?)

Photo Credit: Éole 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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: hands, life style, managing chronic disease, mindfulness, time management, travel

“You must do the thing you think you cannot do”

Evelyn Herwitz · July 29, 2014 · 2 Comments

At the FDR Museum and Library in Hyde Park, N.Y., there is a wooden box with a metal handle. You can pull up on the handle to lift the hidden weight inside. The weight is as heavy as the steel braces worn by Franklin Delano Roosevelt to support his body while standing and walking, after his legs were paralyzed by polio when he was 39. The handle is very hard to move.

Freedom from Fear Hyde Park 7-27-14Whatever your politics (the arguments that raged 80 years ago during FDR’s presidency about the role of government in our daily lives versus unfettered free market capitalism could be cut and pasted into today’s news reports), Roosevelt’s struggle to overcome polio is one of the most inspiring stories I’ve encountered about facing down a chronic illness.

We visited Hyde Park on Sunday, the last stop in our week of day trips that included beaches, dinosaur tracks, the Nathan Hale Homestead, country roads and villages, a woodland hike and Shakespeare al fresco. Though I was familiar with some of FDR’s history and had visited the Roosevelt family home when I was very young (to our daughter Emily’s amusement, I kept remarking that it all looked much smaller than I recalled, undoubtedly because I was about three at the time), I had never understood the full implications of FDR’s illness.

In the summer of 1921, Roosevelt, then a rising star in the Democratic Party who had already served two terms in the New York State Senate, three years as Assistant Secretary of the Navy under Woodrow Wilson, and had been nominated for Vice President on the 1920 Democratic ticket with James Cox, went to visit a New York Boy Scout camp prior to his vacation on Campobello Island, Canada. While sharing food and water with the campers, he was probably exposed to the polio virus.

Not long after, as he was sailing on the Bay of Fundy, FDR lost his balance and fell into the icy waters. The next day, he began to complain of back pain. Within hours of going for a swim, his legs weakened. Three days later, he could no longer stand. He was diagnosed with infantile paralysis, known as polio, on August 25.

The diagnosis was devastating to FDR and his family. He decided to remove himself from politics that fall in order to focus fully on his recovery, but it took another seven years—seven years—for him to regain enough strength and stamina to reenter the political arena. He filled those years with a rigorous regimen of exercise to strengthen his upper body, hot springs treatments and swimming.

By the spring of 1922, he had learned to use the heavy steel braces that stabilized both legs from hip to ankle, locking his knees so they wouldn’t buckle, and was able to walk with assistance. He devised a nimble wheelchair using a dining chair with bicycle-like wheels, a vast improvement over the cumbersome wheelchairs of the day. In the family Springwood estate in Hyde Park, he designed a wheelchair lift worked with hand-pulled ropes, like a large dumbwaiter, that he manipulated to hoist himself between floors. He invited friends and family to keep him company, laugh and joke as he did his exercises, to lift his spirits and normalize the experience for his children.

Two years later, FDR tested the political waters and the public’s reaction to his disability by introducing New York Governor Al Smith as candidate for president at the 1924 Democratic Convention. Walking to the podium with the aid of crutches, he was met with a three-minute ovation—a remarkable outburst of support at a time when people with disabilities were all too often treated as weak and mentally defective, marginalized by their families and isolated by society.

In 1928, FDR ran for governor of New York and won the first of two terms in office, during which he pushed a progressive agenda to aid individuals who suffered in the aftermath of the 1929 stock market crash—policies that helped him to win the presidency in 1932 as the Great Depression deepened.

While his political acumen was key to his political success, FDR’s battle with polio is also considered by historians to be one of the most critical factors in his ability to connect with average Americans struggling to survive during that dark period. His wife, Eleanor, often called his disability a “blessing in disguise”—a deep lesson in patience and persistence, qualities so essential for a President who led the country out of the Depression and through most of World War II.

In FDR’s own words: “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ . . . You must do the thing you think you cannot do.”

For more about FDR’s battle with polio, see this excellent article from the FDR Library.

Image: “BreakFree,” by Edwina Sandys, granddaughter of Winston Churchill, carved from segments of the Berlin Wall, outside the FDR Library in Hyde Park, N.Y.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, FDR battle with polio, managing chronic disease, resilience, vacation

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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