Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

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 Nasty old 19, which nearly ruined a weekend vacation in New York City last May, has been replaced by an implant.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

Social Graces

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Who ever invented the practice of eating at a party while you’re standing up? I enjoy social gatherings with friends and family for special occasions, but I am a klutz when it comes to balancing hors d’oeuvres plate, napkin, utensils, plus a drink, all while milling about in a crowd and chatting.

It’s gotten to the point that I often stick to just a glass of wine or seltzer, and pass on the finger food. I can’t eat without drinking, or I risk problems swallowing. And I can’t manage the plate and the drink with my hands, and still eat, without risk of dropping everything. As for the finger food, with so many bandages, I don’t like eating with my hands, anyway, especially if the food is drippy or the least bit oily.

This is not the most serious problem in the world, certainly. But it is a challenge, and I do feel awkward unless I can find a place to sit and enjoy the nosh, or at least one of those high tables that are designed for standing and eating at a party.

Portable food courses are, I suppose, just another way our casual lifestyle finds expression. Why be constrained by formal seating arrangements when it’s fun to mingle and eat at the same time? When I was younger and my hands worked, this was fine.

But the older I get, and the less nimble my hands become, I really do prefer a sit-down meal. Even party buffets, when you take a plateful of food and find yourself a seat on the couch or a chair, create coordination challenges. Balancing a plate on my lap while trying to manipulate knife and fork, especially if they are made of plastic, is a recipe for a spill. It’s hard enough to grasp the thin plastic utensils, let alone apply enough pressure to cut food with the so-called knife, without sending the food skidding onto my good clothes or the floor.

That said, my solutions for party-eating logistics are as follows:

  • Don’t load up your plate. Less to cut, less to spill and, of course, less risk of overeating.
  • Find a quiet corner where you won’t get jostled while you eat. This also addresses a second issue having nothing to do with scleroderma and everything to do with aging—I have increasing difficulty hearing what someone is saying when there is a lot of background noise.
  • Even better, find a seat in a quiet corner with a table where you can rest your drink while you eat.
  • Best of all, invite your closest friends at the party to join you in your above-mentioned quiet little corner. That way you can enjoy your food, your drink and a good conversation. If you spill something, your friends won’t care. And they’ll help you clean it up.

Image Credit: Le Sortie de l’opéra en l’an 2000, Albert Robida, c. 1882, Library of Congress Prints and Photographs Division, courtesy publicdomainreview.org.

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.

Tale of the Tooth

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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.

State of Mind

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It’s finally here, a week when Al and I kick back and take advantage of all that New England has to offer in the summer, beautiful and fascinating places that other people travel miles and miles to visit, but just happen to be within a few hours’ drive of our home.

We got into summer day-tripping a few years ago to economize, and now it’s become a highlight of the year. We started off on Sunday with an afternoon in Boston’s South End, browsing stores and artist lofts and outdoor booths filled with all kinds of crafts, a massive indoor vintage market (read, upscale term for flea market), plus a farmer’s market.

Strawberry Banke 7-21-14On Monday, we drove up to Portsmouth, N.H., to Strawbery Banke, a living history museum covering four centuries of life in one of that city’s oldest communities. Period homes are surrounded by heritage gardens, including one with a children’s tea party set amidst fanciful fairy houses.

I wouldn’t mind living there for a while. In the fairy garden, I mean.

Even as I’m enjoying the break from routine, the glorious weather so far and discovering regional treasures, I’m having some trouble separating out from what else is going on in the world. When you leave your home for a period of days or weeks, it’s easier to take a complete mental break. This is essential to recharging and relaxing, so critical to maintaining health and well-being.

But I can’t seem to tear myself away from following news in the Middle East. Trying to set a limit, but I feel compelled to keep up, even as I find the developments so stressful. Too much is at stake.

So I was grateful to find an oasis of peace right here in our hometown Sunday night. A few years ago, Al and I decided to initiate an interfaith dialogue between our synagogue and a local mosque. Since that time, members of both our communities have studied texts together, broken bread and come to understand how much our faith traditions have in common.

Weeks before the most recent hostilities broke out between Israel and Hamas, our friends at the mosque had invited us to join them for a Ramadan break-fast. And so, this past Sunday evening, a group of our congregants and our rabbi went to the mosque and shared in a study session about the meaning of the Ramadan fast. We explained fasting in our Jewish tradition. We asked questions. And we learned, once again, how much we have in common.

What made the deepest impression on me, as I listened, was how both Ramadan and Yom Kippur are intended for introspection, self-improvement, mending relationships, bringing goodness into the world and drawing closer to God. Both faith traditions are deeply committed to peace.

I will carry that awareness with me as I follow the news and pray that the best in both sides will prevail. And I’ll try to create my own inner space of peace, appreciating what is good and beautiful all around me, as I take a break from headlines, deadlines and most of my responsibilities for a week. The alternative is to wear myself out, and that won’t do anyone any good, especially me.

After all, vacation, no matter where you are or how you do it, is really only a state of mind.

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.

And I Didn’t Get Sick

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Sitting in St. Louis’s Lambert Airport on Monday morning as I type on my laptop, watching fellow passengers gather at my gate. Surprisingly, some people are actually sitting and talking with their neighbors, rather than burying their noses in cell phones or tablets. One woman is reading a book. As in, the kind made out of paper.

photo-1But plenty of others are typing on laptops, like me, or talking business on smartphones (loudly—don’t they know others are listening?) or texting or checking emails or playing games on tablets. There are comfy armchairs next to electrical outlets to accommodate all our gizmos. I have managed to get everything into my carry-on and purse, so no worries ahead about losing luggage. I’m getting better at air travel since my trip here last year, when my return flight connected through JFK and my checked bag disappeared for 24 hours.

Despite Midwest heat and humidity, the sky is robin’s egg blue with puffy cumulous clouds. A pleasant end to a lovely weekend with my older sister and family, including a visit to the exquisite St.Louis Art Museum, great meals featuring my brother-in-law’s home-grown vegetables, an al fresco Italian dinner, Shabbat services at a local congregation that felt just like home, sharing the Cardinal’s ups and downs against the Pirates and the Brewers, a Sunday brunch with friends, the World Cup finale, and a drizzly performance of Gershwin’s Porgy and Bess at the outdoor Muny Opera (one hour rain delay halfway through Act 1, and the show was cancelled before the last three songs due to approaching thunderstorms, but even so, the music and acting were terrific).

The highlight of our weekend together was hearing my sister, a talented flutist, perform wonderful music with her woodwind quintet at a local bistro. That, and sharing old family stories. “Are you making that up?” she asked me, laughing, since I can always remember more about the past than she, even as we’re both getting a bit fuzzy about recent events. Ah, the power of longterm memory.

Travel remains a challenge—inevitably, the bandages on my finger ulcers get messy and loose, and I need to manage my energy and joints. Getting through security is exhausting, with all the lifting and sorting, organizing purse, shoes, laptop in gray rectangular buckets and then reorganizing everything quickly so as not hold up the person behind me. But fellow travelers have been very helpful, especially with hoisting my bag into the overhead storage bin and retrieving it. And so far, no one’s been too pushy or impatient.

I also decided to pay extra to fly direct this time, to save wear and tear on my body. Definitely the way to go, when possible. So much less stressful, all around.

Best of all (though perhaps I’m tempting fate, here), I have not gotten sick on this trip as on previous ventures in the recent past. No infected ulcers. No cellulitis. No cold virus. No eye infection. No rotten tooth. My worst physical ailment has been reduced hearing and stuffy ears for about 12 hours after landing. All good, and encouraging.

Travel doesn’t always have to mean setting myself back. It can just mean having a great visit with my Big Sis.

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.