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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Taste

65 and 20

Evelyn Herwitz · April 23, 2019 · 2 Comments

On Thursday I turned 65. And today marks the 20th anniversary of my mother’s death. Two milestones linked by memory and blooms.

Last week, in a burst of warmth and wet, all the trees unfurled their chartreuse buds, crabapples and weeping cherries blushed, forsythias gleamed. This is often nature’s gift near my birthday, the sudden, welcome spray of pastels. Winter’s subtle grays are forgotten, and the earth smells sweet.

I spent much of my birthday cooking, with Al as sous chef, for our Passover seder Friday night. The prospect had felt daunting, and less than welcome as a way to mark my 65th, but it turned out to be a lot of fun. I was simply in a good mood. We enjoyed each other’s company, preparing each course at a relaxed pace. Midday, we broke for lunch out, and Al—always the master of surprise—wrapped up our meal with a trip to a wonderful jewelry store, with an invitation to pick out whatever I wanted. Later, when all the cooking was done and the kitchen cleaned, we went out again for a birthday dinner. Throughout the day, I received calls from family and best wishes from friends. I felt thoroughly celebrated and well prepared for the holiday, renewed.

On my 45th birthday, days before my mother’s death in 1999, we spoke on the phone. She was in good spirits because my sister and her family were visiting. A rare and aggressive form of thyroid cancer had appeared suddenly in December, when she brushed a hair from her neck and first noticed a lump. The disease took her life in four months. I had visited numerous times during that winter and early spring and was with her when she passed. In those last moments, as she sipped her final breaths, I had the distinct feeling that she was simply slipping out of her body to somewhere unknown.

In many ways, there was much I did not know about her and have only learned since her death. For a woman of her generation and German heritage, motherhood was a mix of compassion and authority. We had many long talks during my childhood and adolescence, and I learned to be a good listener from her example. But she always maintained privacy about her innermost thoughts and feelings, and revealed little of her own formative years, beyond certain familiar stories of life in Berlin during the rise of the Nazis and her transition to embracing her American citizenship. With twenty years’ perspective, I now understand that the past was simply a place she wanted to leave behind.

Since Al and I traveled to Prague and Berlin as part of our summer vacation, to honor the memory of my great grandparents who were murdered in the Holocaust, I have been thinking of her more, wondering what she really felt during that time, wishing I could ask her. Miraculously, last fall, out of the blue, I heard from a cousin I have never met, whose nonagenarian mother is still alive and able. At the end of May, I am going to visit them in Florida. And so, I may get some answers from the woman who is my mother’s first cousin and the last living link to her generation. This is a great, unexpected blessing.

When we laid my mother to rest, a white cherry sapling had recently been planted in that section of the cemetery, in ground softened by spring’s thaw. It was too young to blossom, then, but casts ample shade near her and my father’s grave today. Its size always surprises me when I visit, a marker of how much time has passed. I like to think, even as she tried to bury her past, that my mother would be pleased that I am reclaiming it, not only for myself through my travels and studying German, but also for my daughters who barely knew her as children.

How much do we ever know our parents, let alone ourselves? I will give the last word to Rainer Maria Rilke, from Requiem for a Friend (The Selected Poetry of Rainer Maria Rilke, trans Stephen Mitchell):

I have my dead, and I have let them go,
and was amazed to see them so contented,
so soon at home in being dead, so cheerful,
so unlike their reputations. Only you
return; brush past me, loiter, try to knock
against something; so that the sound
reveals your presence. . . .

Ich habe Tote, und ich ließ sie hin
und war erstaunt, sie so getrost zu sehn,
so rasch zuhaus im Totsein, so gerecht,
so anders als ihr Ruf. Nur du, du kehrst
zurück; du streifst mich, du gehst um, du willst
an etwas stoßen, daß es klingt von dir
und dich verrät. . . .

 

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. Please view Privacy Policy here.

Image: Paul Herwitz

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch

Another Extraction

Evelyn Herwitz · April 16, 2019 · 2 Comments

So, I was hoping that my resorbing molar would hang in there at least until the summer. Not to be. After a brief hiatus a few weeks ago, the tooth began acting up, with no signs of abating. Last Monday, I realized I needed to take action, because the coming weeks are busy with Passover and travel plans, not to mention my birthday later this week, which I was not about to ruin with a toothache.

Fortunately, my periodontist was able to fit me in last Wednesday. I tried not to think about it too much in advance, and there wasn’t much time to angst, anyway. A good thing, because it is such an unpleasant experience. My periodontist is very skilled and has incredible patience, both essential to extracting a big molar from the back of my jaw when I can’t fully open my mouth due to skin that remains somewhat tight. But it’s a struggle—for both of us.

The main problem, other than simply getting all the tools in my mouth and the constant tugging at my less-than-flexible lips, was that the ligament surrounding my molar had been destroyed, thanks to scleroderma. This is the membrane that enables the tooth to wiggle when loose and be easily pulled out. Instead, as had been the case the last time I had this procedure done, the roots of my very big molar had fused to my jawbone. So he had to drill them out. Not fun. I tried to calm myself by listening to the soothing classical music in the background and focusing on my breath, which definitely helped.

Because he had to drill so deeply, it took a lot of novocaine to numb my nerves. He finally used a combination of novocaine and epinephrine, which has the advantage of intensifying the local anesthetic, but the very big downside of causing my heart to race and giving me the shakes for a while after the shot. I absolutely hate the stuff, but had not realized I hadn’t told them in advance. So that detail will go into my chart for next time.

The whole process of extricating the molar, taking an X-ray to see if he’d gotten the whole root, drilling some more, then inserting the bone graft and stitching me up again, took about two (very long) hours. Knowing it would be hours more before the novocaine wore off (my body processes anesthesia very slowly), I drove 45 minutes back to my home pharmacy, picked up medication (and was pleased that my new Medicare Part D pharmacy card works), got home, finished up loose ends of work, and then lay down with an icepack on my jaw. (Icepacks are tricky, because they can set off my Raynaud’s, but better to put up with that than have a really swollen face.)

Five days later, my jaw continues to heal. Swelling is receding. One of the stitches already fell out on its own, as expected. It’s not comfortable, but significantly improved from the nerve pain that was only going to get worse if I waited any longer. I charged the expense to one of our travel credit cards, so at least we’ll get some points from the ordeal.

I’m glad it’s over, and that it will be mid-summer, at least, before the next step of drilling and inserting the implant that forms the base for the crown. I’m also glad that the gap in my teeth is not visible, so I don’t have to look like Alfred E. Newman for the next nine months. I’m very grateful that we have the resources to deal with this, and I really, really hope that it will be years more before I have to go through it again.

And, so, another tooth bites the dust.

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. Please view Privacy Policy here.

Image: Daniel Frank

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Filed Under: Body, Mind, Taste, Touch Tagged With: body-mind balance, dental implants, mindfulness, Raynaud's

Chew on This

Evelyn Herwitz · March 19, 2019 · 2 Comments

Last week was one of those weeks when I burned up a lot of time going to, being at, and going home from medical appointments. Most were routine and anticipated, but one was not: a visit to my periodontist.

One of the rarer complications of scleroderma is resorption of tooth roots. As my periodontist has explained it to me, my body thinks some of my teeth are invaders and begins to attack the roots like PacMan (albeit much slower). I’ve lost four teeth to this phenomenon over the years. Two were lower rear molars that were simply extracted, and two others involved extractions and implants. My dentist has identified two other teeth that are endangered and has been monitoring them for years.

A couple of weeks ago, one of those teeth announced it was not happy, provoking unpredictable waves of sensitivity in my jaw that felt like a dull ache. I have no idea what caused it to spark. I was not pleased.

When I saw my dentist to get his opinion, he was quite candid. At some point in the not-too-distant future, I would need to go through the expensive process of another extraction, implant and crown. So I made a follow-up appointment with my periodontist to see what steps I needed to set in motion.

By the time I saw him last Wednesday, the tooth was calming down. He took a look and confirmed that my molar was, indeed, on the way out. But he also said that it was really up to me to determine when to take action. If the pain were tolerable or even reduced to background noise, I could leave it be until it inevitably got worse. I could also just have it extracted and skip the implant, but that didn’t make a lot of sense, given the fact that I don’t want to have any more issues chewing and swallowing than I already have (more complications from scleroderma and Sjogren’s Syndrome).

So, I decided to wait. Sure enough, a week later, the molar is relatively silent. I know I will undoubtedly have to deal with it over the summer, but at least I don’t need to jump.

This decision is made more complicated by the fact that I have to switch over to Medicare by the end of the month. All of the supplemental dental plans have a 12-month waiting period for the kinds of procedures involved—unless I stick with my current provider, in which case they might wave that waiting period, but I have yet to confirm.

Even with dental insurance, for which you pay a decent chunk of change, there is typically an annual benefit cap of about $1,000 or a little more. As my periodontist observed, I have to be really sure the premiums are worth it, given that what I’d receive is only about an eighth of what the process will cost. The net benefit is small.

While I’m fortunate to have the financial means to have options, the tradeoffs are infuriating. Why is dental insurance so lousy? Especially as you get older, keeping your teeth is as important to your overall health and well being as staying in shape. It’s not a vanity project. It’s about being able to eat comfortably and safely. It’s also about avoiding complications of infections and other serious dental health issues. But so many people cannot afford the care necessary to preserve their teeth that the simple act of smiling is a very visible marker of social class and economic disparities.

All of which is to say that as our nation wrestles with the question of whether and how to provide universal health care, we must make sure the conversation includes dental health care, as well. Our mouths aren’t separate from our bodies. We can’t just swallow the status quo.

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. Please view Privacy Policy here.

Image: Umanoide (And no, those aren’t my teeth.)

 

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Filed Under: Body, Mind, Taste, Touch Tagged With: dental health, dental implants, dental insurance, managing chronic disease, resilience

In Praise of Chocolate

Evelyn Herwitz · January 8, 2019 · Leave a Comment

It’s getting colder out. On Sunday, snow swirled down from the skies when it was supposed to be sunny. Monday we started off in the teens and never got above low twenties. Snow is predicted for Tuesday morning.

I find myself craving chocolate. Not milk chocolate or white chocolate, but serious, bitter-sweet, dark chocolate. Fortunately, Al must have read my mind, because he bought a bag of dark chocolate bark when he went grocery shopping on Sunday afternoon. God bless him.

Dark chocolate is good for you. I know this because the Harvard School of Public Health says so. The flavanols in cocoa help to lower blood pressure, which makes consumption of dark chocolate, which is rich in flavanols, essential these days, given all of the crazy, distressing news. Dark chocolate can also reduce risk of diabetes and heart disease. I’m all for that.

When I was a marketing director at a small New England college, I always had a bowl of dark chocolate sitting out in the department’s open office space. My staff loved it. So did our colleagues, who would come to visit and snag a few pieces. Chocolate makes people happy. It brings us together. Also a good thing at a time of such divisiveness.

Too much of a good thing, of course, can become a problem. If I eat more than I should, the caffeine in dark chocolate can trip my heart arrhythmia. While that’s pretty annoying, it’s also a built-in warning signal that prevents me from gorging and gaining weight from the stuff.

So, I’ll try not to devour that bag that Al bought before the week is out. A piece a day⎯maybe two⎯should ward off the cold and keep my blood pressure in check as the temperatures drop and the news roars on. Just as a preventative, of course.

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. Please view Privacy Policy here.

Image: Charisse Kenion

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Filed Under: Body, Hearing, Mind, Smell, Taste

Progress Report

Evelyn Herwitz · October 2, 2018 · 4 Comments

A year ago today, I was two weeks away from my second hand surgery to repair damage from severe ulcers in five fingers—damage that had exposed bone and broken two of my knuckles. My left index and right pinky were held together by steel pins, and I didn’t know if I would lose them in the next procedure. My hand surgeon felt that skin grafts were worth trying, but we didn’t know if they would heal properly. He had warned me at the outset that these were the first of many surgeries.

What a difference a year makes! I’ve been extremely fortunate. A gifted surgeon, excellent wound care and 60 dives in a hyperbaric oxygen chamber, plus effective occupational therapy sessions (and health insurance to cover it all), combined with a lot of support from family and friends enabled me to heal.

And I am cooking again. Al had picked up the slack in the kitchen for well over a year, ever since the ulcers became too painful for me to handle any utensils. He cooked up some great meals and discovered that he really enjoyed experimenting with new recipes. I was grateful for all that good and healthy food.

But a part of me missed cooking. It’s never been a major focus in my life. I don’t spend hours pouring over cookbooks and savoring the thought of new recipes. However, I do like making a good meal, especially for the holidays. It’s exhausting, but satisfying to turn out a gourmet, multi-course dinner. It gives me pleasure to prepare food that brings others enjoyment.

At some point over the summer, I began baking bread again for our Friday night Shabbat dinners. Al had gotten quite good at this, and he was deservedly proud of his delicious braided loaves, but he was happy to have me pick it up again. I also was able to help clean up after meals, which had been impossible with the ulcers and ensuing surgery.

The Jewish New Year, Rosh Hashanah, arrived just a few days after we came home from Europe last month. I knew it would be too much to have a big crowd, so we just invited a few close family members for the first night. But, to my and Al’s surprise, I was able to do most of the cooking myself. He served as sous chef, cutting vegetables. Even still, I was able to handle the chef’s knife and do a lot of prep myself. Everyone enjoyed the meal, and I felt like I had crossed the finish line.

I have been doing most of the cooking ever since, although I still have to be careful. I developed an ulcer in one of my skin grafts shortly after we returned from our trip, but I think this was actually caused by some calcinosis lurking just under the surface. It is gradually healing. Al is enjoying a well-earned reprieve, although I recruit him for help as needed.

Mostly, I’m amazed and extremely grateful that I can actually do so much with my hands again. It’s taken all this time to relearn how to use them, and I certainly have my limits. But it’s wonderful to see that, despite all the challenges, my body can truly heal.

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. Please view Privacy Policy here.

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Filed Under: Body, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, calcinosis, finger ulcers, hand surgery, hands, managing chronic disease, resilience

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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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