Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Interlude

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Our long weekend in Vermont already seems a long time past, but I have the pictures to prove that we really were there just ten days ago. I’ve never been to Lake Champlain, so we set our sites on Burlington, but also took in the beautiful farmlands and mountains nearby in our travels.

High points of our visit included a sail on the lake (the captain let me take the helm for a while, which is a topic for another post), the Lake Champlain Maritime Museum (where I learned about the very complex history of Benedict Arnold), the Shelburn Museum (yes, that really is a steamboat in the middle of the lawn), Fort Ticonderoga in New York (site of critical Revolutionary War battles), and the Von Trapp Greenhouse and demonstration garden in Waitsfield, Vermont (yes, those Von Trapps). Oh, and the food was truly amazing. Enjoy!

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.

Time for a Break

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No big travel plans for this summer, once again. But we’re trying to make the most of day trips. Two weekends ago, we spent a beautiful day in Rockport, Massachusetts. I hope you enjoy the view.

I’ll be taking a break from this blog next week, back on August 24. I hope you’re finding time to savor good weather, travel safely, and relax, too. 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.

#24

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More than two years have passed since I last had a tooth extracted due to a complication of scleroderma that causes my immune system to attack the roots of my teeth. But, once again, another one had to go. This time, it was my lower front left tooth, known to dentists as #24.

I’ve had two implants so far. My dental team and I have been tracking another four teeth at risk. At my last cleaning, my hygienist noticed that 24 looked pink at the bottom, indicating the tooth was hollowing out and blood was seeping inside. An X-ray confirmed the extent of the resorption.

At that point, surprisingly, I was not experiencing any nerve pain, given the damage. A consult with my periodontist left timing of the inevitable procedure up to me. I also saw my dentist to discuss the situation, have a new panorama X-ray taken, and figure out where things stood. The other three teeth have not progressed as far, fortunately, so I’ll just continue to deal with them one at a time. But after about a month, I realized 24 was getting more sensitive. I heal faster in summer, so it was time to take care of it.

And so it was, last Wednesday, that I found myself, once again, slightly upside down in my periodontist’s exam chair, trying not to get anxious as I awaited the first shot of Novocaine. Fortunately, the topical anesthetic that preceded the shots worked expeditiously, and the Novocaine took hold quickly, too, so I was spared much discomfort. But I still hate those needles.

Since the tooth was up front, the procedure was somewhat easier than for the past two molars. Just one root instead of multiples, and no overstretching my mouth to get in the back, which is very uncomfortable. But as has been the case before, the ligaments that form a sock around the roots, making it easier to pull, were dried up, so the root was fused to my jaw and had to be drilled out.

The whole process took about an hour, half the time for previous molars. I did my best to stay in the moment, breathe, and listen to Vivaldi streaming on the music system. I recognized one of the pieces that I used to play on my violin in high school. It was a relief when my periodontist finished the last stitch and I could get out of that chair.

Residual pain, once the Novocaine wore off, was, thankfully, minimal and manageable with over-the-counter pain meds. Swelling subsided within 48 hours, thanks to a lot of icing that first day. I can eat without much trouble.

The one mistake I made was assuming the missing tooth, given that is was in my lower jaw, would not be noticeable. Alas, I look like Alfred E. Neuman, except on the bottom. So, I’m going to have a “flipper” made, which is a false tooth that is removed when you eat. Given that this whole procedure, from extraction to implant to crown, will cost about $9,000, with no insurance coverage (outrageous!), the additional $350 for the flipper seemed a drop in the bucket. I really don’t want to live with a gap in my teeth for nine months until I get the crown. I’m not letting scleroderma get the better of how I look and feel about my appearance. Some might call it vanity, but I call it self-esteem.

And there’s a silver lining. Once again, by charging payments on my travel credit card, which we always pay off at month’s end, I’ll at least get more points for whenever we can finally take another extended vacation safely, without fear of Covid complications. Hoping that’ll be at least by next April, when 24 is fully replaced.

Sooner would be better.

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: Photo courtesy of Gratisography

Reality Check

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This past week of news about the Delta variant and breakthrough Covid infections for people who are fully vaccinated has caused me to reassess. A study released last week by Israeli scientists about the effectiveness of the Pfizer vaccine indicates that, while it remains a strong shield against severe Covid, it is just 39 percent effective against infections from Delta. The data sample is much smaller than an earlier Israeli study of the vaccine’s effectiveness (which found Pfizer to be 95 percent back in January), but the implications are certainly worrisome.

For the unvaccinated among us, Delta is a true health risk. It is highly contagious, transmitting a thousand times the viral load of earlier variants and has a shorter incubation period. The vast majority of people now hospitalized with Covid in the U.S. are unvaccinated, and infection rates are on the rise again throughout the U.S., particularly in regions where people have been averse to vaccination.

But breakthrough cases worldwide are on the uptick, too. Last week, the Dutch equivalent to our CDC reported that 9 percent of all Covid cases recorded in the Netherlands were among fully vaccinated individuals, and 14 percent of the cases involved people who were partially vaccinated. Note, too, that the fully vaccinated can still transmit the Delta variant without knowing it, if they are asymptomatic, increasing risks to the unvaccinated.

Again, the main vaccines here in the U.S. remain effective against severe Covid, thank goodness. But I have also read of people getting Covid when fully vaccinated who get sick enough to be out for a week, or who lose sense of smell and taste. “Mild” Covid is still no picnic.

All of this leads me to be more cautious, once again. So frustrating, just as we were all just beginning to feel relieved this summer. But I’m back to wearing a mask in stores and avoiding indoor restaurant seating. If we make it to a baseball game or other crowded outdoor venue, I’ll be wearing a mask in the stadium, because there will be no way to socially distance from other fans. No airplane trips in my immediate future. If, as is now being discussed, those of us 65 and older are advised to get a booster shot—effectively a third dose of Moderna, for me—I will be first in line.

Like it or not, we’re all in this together. I need to protect myself, my family and friends, and strangers, too. Stay safe out there.

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: Donald Giannatti

Fear of Flying

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I subscribe to a great travel website, Scott’s Cheap Flights, that lists best airfares on reliable carriers for international travel. Lately, more and more destination deals are landing in my in-box, and Scott’s has consistently published flights with good cancellation policies during the pandemic.

But I’m still not ready to make any long-distance vacation plans. Not for this summer, anyway. I have my sights set on October, when I suspect the Delta variant will be better understood and any new rounds of restrictions will be in place. But who knows? I’ve read about even more variants emerging. The real question is whether the vaccines continue to hold up, which so far, they have, thank goodness.

It’s easy to fall into a default of staying put. As Delta surges in communities that have resisted the vaccine, and as vaccine rollout around the world remains much slower than in wealthier countries like the U.S., which have more resources to purchase doses, there are more chances for this opportunistic virus to morph into more resistant strains. We’re in the midst of a huge public health experiment, if you will, without consistent vaccine protocols and availability worldwide. The risks remain very real. I am convinced we will be living with some form of Covid for many years to come, though I hope it will eventually become endemic, just as the Spanish influenza pandemic of 1918 was the precursor of the flu we all have learned to live with. Vaccines are key.

But I also don’t want to become so fearful that I never get on a plane again. Obnoxious passengers who delay flights because they refuse to cooperate with mask mandates are an unpleasant prospect, certainly. Can’t let them control the skies. My strategy at present is to start researching a prospective trip in August for October, make sure I find flights and places to stay with flexible cancellation policies, travel only to locations where Covid rates are under control and good medical care is available, and to get comprehensive travel insurance.

I’ve made the leap of getting out in public without a mask where CDC and Massachusetts guidelines allow, have even begun eating inside in restaurants, again. It’s time to start dreaming of visiting far-away places, with reasonable precautions. We’re blessed with the resources to make this happen. Now I have to push farther out of my “comfort” zone and just do it.

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: Dariusz Sankowski