Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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“A People’s Contest”

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On this July 4th, I’m looking forward to relaxing and going to an outdoor concert in the evening, a classic way to mark Independence Day. But I’m also thinking about what our country means to me and what’s at stake in these fraught times. So I turned to Abraham Lincoln for some insights.

I share with you here excerpts from his July 4, 1861 Message to Congress, at the outset of the Civil War. He opens with an explanation of his profoundly difficult decision to invoke war powers in response to the Confederate Army’s April 12 assault on Fort Sumter in Charleston Harbor, South Carolina. While much of Lincoln’s message is specific to the details of the war, his thoughts about our republic remain as fresh and insightful as the day he wrote them. Well worth recalling today in our divided nation:

And this issue [the attack on Fort Sumter] embraces more than the fate of these United States. It presents to the whole family of man the question whether a constitutional republic, or democracy—a government of the people by the same people—can or can not maintain its territorial integrity against its own domestic foes. It presents the question whether discontented individuals, too few in numbers to control administration according to organic law in any case, can always, upon the pretenses made in this case, or on any other pretenses, or arbitrarily without any pretense, break up their government, and thus practically put an end to free government upon the earth. It forces us to ask, Is there in all republics this inherent and fatal weakness? Must a government of necessity be too strong for the liberties of its own people, or too weak to maintain its own existence? . . .

This is essentially a people’s contest. On the side of the Union it is a struggle for maintaining in the world that form and substance of government whose leading object is to elevate the condition of men; to lift artificial weights from all shoulders; to clear the paths of laudable pursuit for all; to afford all an unfettered start and a fair chance in the race of life. . . .

Our popular Government has often been called an experiment. Two points in it our people have already settled—the successful establishing and the successful administering of it. One still remains—its successful maintenance against a formidable internal attempt to overthrow it. It is now for them to demonstrate to the world that those who can fairly carry an election can also suppress a rebellion; that ballots are the rightful and peaceful successors of bullets, and that when ballots have fairly and constitutionally [been] decided there can be no successful appeal back to bullets; that there can be no successful appeal except to ballots themselves at succeeding elections. Such will be a great lesson of peace, teaching men that what they can not take by an election neither can they take it by a war; teaching all the folly of being the beginners of a war. . . .

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: Abraham Lincoln photographic portrait by Joseph E. Baker, c 1865; Library of Congress

A Tale of Three Surgeons

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It’s Sunday afternoon as I write, and I am still in Philadelphia. This has not been a pleasure trip. My younger daughter needed emergency surgery last week, and, with her permission, here’s what happened (a long story):

A week ago Friday, my daughter had what was supposed to be a routine procedure at her oral surgeon’s office to extract two impacted wisdom teeth from her lower jaw. We texted in the morning beforehand, and despite a snafu with her planned ride, who had to cancel at the last minute, she was able to get to her appointment and find a substitute to take her home. “I hope that’s the only thing that goes wrong!” she texted. “Me, too!” I answered.

This was not to be. A few hours later I received a text: “Done just waiting for the anesthesia to fully wear off. My jaw is broken on the right so they need to see me on Tuesday or Wednesday but otherwise shouldn’t be too bad.”

To which I responded, “What???”

She couldn’t really tell me much more when I called her, and it was painful to talk because of the jaw fracture. So I called my own periodontist for advice, spoke to one of the nurses who knows me well from all my dental implants, and followed her suggestion to call the oral surgeon, Dr. N, in Philly, with my daughter’s permission, to find out what the hell had happened.

He took my call right away and explained that, indeed, her right jaw had fractured during the procedure and that her jaw would probably need to be wired shut for six to eight weeks. She had an appointment Tuesday with him, and he was working on getting her added to the OR schedule for Wednesday or Thursday at the nearby hospital. He attributed the issue to “soft bones.” Since she has Celiac, this is an actual possibility.

I called my daughter and broke the news, then told her I would fly down on Monday, Memorial Day, and stay with her for the week. She welcomed the idea, given the very upsetting prospect of jaw surgery and complicated nutritional issues for recuperation.

Fast forward to our Tuesday morning meeting with Dr. N. He had encouraged us to write down all our questions and we had a long list. He came into the exam room after a 45-minute wait and told her that she would need to have her jaw stabilized with a metal plate and then wired shut—possibly using elastic bands to keep her jaw closed, but maybe using actual wire to close it permanently during the recovery period. He insisted on giving us worst case scenarios for healing time. He demonstrated how she would have to learn to speak with just her lips because her jaw would not be able to move. He explained how she would be on a liquid diet the entire time.

Let us just say that it was not an upbeat conversation. Again, he said she had soft bones, but never explained beyond that why this happened, just focused on the surgery. He also informed us that he would be handing off the procedure to two of his practice members, Dr. B Sr and Dr. B Jr, who were highly experienced working on trauma jaw repair for children. Since my daughter is very petite and has a small face, this made eminent sense. And we were both just as glad that he would not be involved. He has sterling credentials and also is very experienced with facial trauma surgery, but the Drs B have even more experience.

She was scheduled for surgery the next day, but as an add-on to the OR list, so we were told to get to the hospital by 1:30 p.m. and her procedure was scheduled for 3:00 p.m or later. All this time, I should add, she was holding up remarkably well, given the situation, but in a lot of discomfort because of her jaw fracture and could not eat much.

Once she was prepped in pre-op, I was allowed to sit with her until the procedure started. We waited a long time. Finally, Dr. B Sr came to explain the surgery. And here is the difference between Dr. N and Dr. B Sr. He actually explained, in very understandable terms, with a photocopy of her jaw X-ray, what had happened and why.

My daughter has, like me, large teeth for a small jaw. Her impacted wisdom teeth were large and lodged sideways, so removing them left a big hole in her gums on either side. There’s not much left, now, above her slender jaw bone where the teeth had resided. The right extraction caused the jaw to fracture and move upwards, pinching a nerve.

But the key point here is that she would have been at risk of even more complicated fractures had she not had the extractions done, because she has what is called a ‘glass jaw.’ Some boxers have this issue: if they have impacted wisdom teeth and relatively small jawbones, when hit, their jaws fracture. My daughter was always at risk of a fracture with the wisdom teeth removal, though no one ever told her that. If she had waited any longer for the extraction, her risk would have gone up. It was basically a no-win situation. Dr B. Sr explained that this is an issue for petite people like her. (And it was not a case of soft bones, because she had a bone density scan within the past year and was fine.)

We both were very relieved after we spoke with him. Finally, it all made sense. Dr. N had not screwed up. It was not a fluke. It was just a real risk that, unfortunately, played out. And Dr. B. Sr knew what he was talking about as chief of Maxillofacial surgery at one of the children’s hospitals in Philly. His son is also an expert in the field and on staff at the same hospital.

She was finally wheeled into the OR around 5:00 p.m. Three hours later, the Drs. B came out to meet with me in the waiting area. All went as well as possible. Although the OR team had initially said they had none of the elastic bands we had hoped would be used during the procedure and she’d have to be hard-wired shut, the Drs. B had figured out an alternative, McGyvering a piece of catheter tubing to do the trick. They had to make an incision externally to put in the jaw plate, because her mouth is too small to do it from the inside, but otherwise she was in good shape with an excellent prognosis.

A while later I got to see her in recovery. True to form, even as she was still woozy, she was already in charge, instructing me whom to contact (boss, family, best friends) to give an update, and able to speak understandably, even with her jaw shut tight. As they wheeled her up to her hospital room for overnight observation, I said good night and headed back to her apartment, a half-hour drive away. I was able to find my way and even park in a tight street spot, like a true Philly resident.

Thursday, she came home from the hospital and we began to experiment with making smoothies with all kinds of ingredients, so she could finally eat. On Friday, I drove her to see Dr. B Jr. for a follow-up. Like his father, he was calm, clear, a great listener, and willing to go the extra mile to help her. He swapped out the substitute elastic for the real thing and also told her how to remove and replace the elastics, so that she can take her other medications. He expected to be able to switch her to more stretchable elastics in a few weeks, and he was hopeful that she’d be out of the elastics at four weeks. The metal hardware in her gums that hold the elastics would come out a couple of weeks after that.

As of Sunday, the swelling in her face is nearly gone, she is able to take all her meds in pill form, and she’s been enjoying my creative smoothies. Her favorite is chocolate oat “ice cream” with oat milk and protein powder for an afternoon snack. She can smile and talk without a problem, though it’s tiring after a while. We’ve taken some walks and gone to an art museum. We see Dr. B Jr. again on Monday, and then we’ll drive back to Massachusetts on Tuesday so that she can recuperate with us for a couple of weeks.

This is a long way of saying that so much of going through an experience like this depends on good communications with medical professionals. While neither of us fault Dr. N for the mishap, his personal style was far too blunt and focused on fixing things, not on my daughter as a person in a vulnerable situation who was in pain and scared. The Drs. B had a totally different approach, setting a calm tone, educating, encouraging, and giving us confidence that this would work out. And, thank God, it did.

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.

Up in the Air

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I’m traveling again on my own, sitting at Logan airport, waiting to board my flight to Philadelphia. So far, so good, but as much as I try to anticipate how to make the journey easier on my hands, there are always surprises.

One thing I did right: I knew the flight was full, and my seat is in the back. Chances of getting overhead storage for my carry-on was slim. So I volunteered to check my bag when the inevitable announcement came. Saved $30 and spared my hands and back. There’s an Apple Air Tag in my bag, in case it gets lost in transit.

One thing I should have realized in advance: Getting though the entrance to security requires showing your ID, which I had ready, but my driver’s license is in a wallet with a window. Nope, needs to be handed to the security staff, because they run it through a card reader. I fumbled and fumbled to remove it. Fortunately, no impatient person was in the very short line behind me. But I needed the TSA guy to take it out for me, just couldn’t do it myself. Ugh.

Something I wish I could manage better: Lifting my luggage into the TSA bins, taking out my computer, taking off shoes, et al is always the hardest part of air travel for me. (“Do you happen to be 75 or older?” asked the TSA guy politely, regarding the shoes. Apparently when you reach that magic age, you are no longer suspect for having dangerous items concealed in your footware. “No,” I asserted. He apologized for asking. Ugh.) At least security wasn’t crowded, so I didn’t feel as rushed as usual.

Another thing I did right, sort of: With a lot of time to kill, I got a bagel and cream cheese and some tea at a Starbucks in the terminal. Of course, this meant that I had to spread the cream cheese myself. It came in a foil packet with a nick at one end and directions to “tear here.” Unless you have strong fingertips, these things never work. I had packed a pair of manicure scissors for just such a challenge. But I put them in my backpack, instead of my purse. So, lots of digging around before I could pull them out and use them. Next time, I need to remember that I can put them in my purse—no issue with tiny scissors going through the TSA scan (especially since it raised no issue when my backpack passed inspection—duh).

A useful trick that I learned from my trip to Germany: To protect my thumbs, which are always bandaged because of ulcers that never heal, I wrap the bandages with a second layer using Coban. This is an elastic fabric that comes in rolls and sticks to itself. One of my medical team recommended it as a way to cushion my thumbs and protect them more. It works pretty well, and serves also as a second layer to keep my bandages from getting dirty from travel.

A necessary precaution: I’m wearing a mask in the airport and on the flight. Enough coughs and sneezes in the vicinity, and I don’t want to get sick or make others sick when I arrive.

I wish flying were simpler and enjoyable. It isn’t.

Even still, I am always amazed that a huge steel tube with wings, filled with tons of people and luggage, can rise into the air and carry us to distant places. The view of clouds and patchwork landscape and cities from above never fails to fascinate. For all the drawbacks of air travel in the 21st century, it’s still a wonder. . . .

And I made it to Philly without a hitch.

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.

Design Flaw

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Last Friday it was really hot, in the 90s, the kind of sudden temperature spike that causes spring to fast-forward. The kind of day that makes dough rise quickly, as was the case in my kitchen, because Passover was over and I needed to bake some challah for Friday night. By late afternoon, the dough had plumped high in its bowl. Even with the back door and porch slider open, the kitchen was uncomfortably warm.

So, I opened our two solar-powered kitchen skylights to let the heat out through the roof.  They operate by remote control, and if it rains, close automatically. Quite the technological innovation, compared to our old leaky skylights with their clunky crank that required a wobbly pole to open and close.

Cleaning up after dinner, I picked up the remotes (each window has its own) and clicked the button to close each skylight. The left one immediately began to shut. But not the right. I switched out the AAA batteries and tried again. No luck. I tried the remote for the left skylight. Nope. Temperatures were sinking overnight into the 50s, and the skylight was wide open. I said to Al, “We have a problem.”

Now, Al, by his own admission, is not Mr. Handyman, and although I can see what needs to be done, I cannot often do it if the task requires some manual dexterity. Also, when I get stressed, I have trouble with word-finding. This is a problem that developed after I hit menopause, and it is extremely frustrating, which only makes the problem more pronounced. I know what I want to say, but I have to talk around the subject to get to the words I want. “Thingy” is one of my fall-back nouns. Not great for giving directions to my dear husband.

I had no idea where I had put the instructions for the skylights, so I began searching online for our skylight brand and problems with the remote. I soon learned that the issue involved resetting the wireless signal between the skylight and the remote. That made sense. Just one problem. You had to remove the insect screen from the skylight in order to do the reset, because the sensor was in the skylight frame. “It’s easy,” reassured the YouTube video. “All you need is a paperclip.”

Really? Now, I don’t about you, but as far as I know, skylights are located in ceilings. And in our kitchen, the ceiling is high, maybe 12 feet. I imagine that other people install their skylights in even higher ceilings. So you need a tall ladder to reach it. Which we do not own. On the rare occasions when we have a chore that requires one, we borrow from a helpful neighbor up the street. However, at 10:30 at night on a Friday, I was not about to call him.

Al’s first thought was to go up on the kitchen roof and try to make the adjustment from outside, an idea I emphatically vetoed. Even though the one ladder we own would make that possible (the eaves are lower than the peak of the roof), it was dark and too risky. Plus, as we later discovered, it would not have worked.

But he did convince me to let him try to bring that old rickety ladder inside and see if he could reach the skylight screen. He managed to prop it up safely enough, with me holding it steady and spotting him, to climb up and, by standing partly on the ladder and partly on the kitchen table, remove the screen from the skylight.

With Step 1 accomplished, we moved on to Step 2. This involved finding the tiny hole in the skylight frame that accesses the reset device. My ability to explain this to Al while I was getting more and more agitated because I could not find a working flashlight and we had to resort to using Al’s iPhone for him to locate this little pinhole in the skylight frame while I was replaying the YouTube video on mine was, shall we say, impaired.

However, we did locate the hole. Here’s where the paperclip comes in. You have to unbend a paperclip, insert it in the hole for 10 seconds, and then the skylight will move. Yes, a paperclip. Why not a button? Why not a switch? I have no idea.

Al inserted the unbent paperclip. Nothing. Now I was really getting frantic. How were we going to close it before the temperature dropped? Al suggested trying a larger paperclip, since he didn’t think the first one went in all the way. So I dumped all my paperclips on the table and found a bigger one, which I unbent and gave him. And, voila! The skylight began to hum and close. Thank goodness.

There’s a third step involved, which we postponed: sticking yet another paperclip into a hole on the remote, after you do the 10 second routine on the skylight frame, to re-pair the remote with the window. That will wait for a sunny day when we can borrow our neighbor’s ladder and not worry about a temperature drop.

After we put everything back in place and tidied up the kitchen, I was relieved. This was not how I had intended to spend Friday night, but we had managed to solve the problem, together, without breaking anything or getting injured or having an argument.

I was also incredulous. What genius thought it made sense to design a skylight that cannot be closed manually if it fails electronically, without climbing on a tall ladder to do so? And why a paperclip? This presumes not only that you have a tall ladder, but also that you have a stash of paperclips, which, in a world evolving away from using paper for documents that need to be clipped together, is becoming an anachronism.

But I digress. The one bonus of this adventure, if you’ve read this far, is it gave me a ridiculous story to tell. And we all need a good dose of ridiculous these days.

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.

Anticipation

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If all goes according to plan, next week I will be traveling to Germany to research my second novel. (Where is the first novel, you might ask? It’s in search of a literary agent, a long process. Details at my author’s website.) The second novel is set in Germany during 1928-1938, and I’m heading for Berlin, Dessau, and Munich. As we all know, when it comes to travel (and life in general) the adage “Man plans, God laughs” is often apt.

So, fingers crossed.

This is the first time I have ever ventured abroad on my own. I never traveled as a teen or young adult, with the exception of a two-week, whirlwind trip with my sister in 1973, a gift from our grandmother, who wanted us to see her German homeland and get a taste of Europe. We traveled by Eurailpass, back when it was really cheap to go First Class, from London to Berlin (we took the train-ferry across the English Channel to Belgium, then flew into Berlin since access was limited because the country and city were still divided), and on from Berlin to Copenhagen, Amsterdam, Zurich, and Paris. We stayed in youth hostels, dragged our suitcases everywhere, saw a lot, but decided to come home a few days early because we were totally exhausted.

In recent years, Al and I have traveled to Israel and made several wonderful trips to Europe, plus a lovely visit to Canada this past summer, and I’ve gained a lot of experience with travel planning. With this trip, I’m putting all of that to good use. I’ve cleared my plan with my entire medical team, who have been universally supportive and encouraging. And Al and our daughter are, as ever, supportive, too.

After all the restrictions of the pandemic and the past couple of years trying to figure out what exactly has been going on with my heart and lungs, I am both grateful to be feeling up for the adventure and trying my best to stay healthy prior to and during my travels. More than just a trip I’ve been dreaming of for several years and planning for months, this is a personal-best challenge to myself. I need to know, as I approach my 69th birthday next month, that I can just do it.

So, if all goes according to plan, I will be taking a break from writing here for a few weeks. I hope to have some great stories and photos to share when I’m back at the end of the month. In the meantime, Dear Reader, be well.

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: Stefan Widua