Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Say Cheese

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We could all use a reason to smile right now, and I have a good one. I finally have a full set of teeth.

Back at the end of last July, I once again had to have a tooth extracted due to root resorption from scleroderma. It’s been a long nine months without my lower front tooth, #24, waiting first for the bone graft to heal, then for the implant to heal, then for the crown to be made, and finally, on Monday, to complete the whole process and get my new tooth.

Except I actually lost another tooth along the way. When I saw my dentist last month to take the impressions for the crown for #24, I told him that my periodontist had said #23, right next to it, was already 50 percent resorbed and quite fragile. Would I be able to have a second implant next to the first? I asked.

He paused, then shook his head. Not enough room, not enough bone in my jaw to make it work.

My heart sank. Now what?

Fortunately, he had a good solution. Have #23 extracted soon, then he would order a “cantilevered” crown—essentially, a false tooth for #23 attached to the crown for #24. I’d need a temporary version for the three months it would take for my gums to fully heal from the extraction and bone graft, then a permanent crown by summer.

Not that I wanted the discomfort and expense of another extraction and bone graft so soon, but better now than later. So I went ahead and had #23 removed by my periodontist a couple of weeks ago. It went as well as could be hoped, my gums healed in a week, and I got my temporary crown on Monday afternoon.

I have to say, it’s very, very nice to be able to smile without a big gap in my lower front teeth. My tongue misses having that gap to play with (back to second-grade-missing-teeth time), and the crown takes some getting used to. But given that mask mandates are gradually easing here in Massachusetts, it is great to have a full set of teeth, once again. And I am very grateful that we have the means to afford it.

Not so for many. It really is high time for dental insurance policies to cover more than just cleanings and fillings. Healthy teeth and gums are not cosmetic luxuries. They’re essential for eating well and communicating, and play a huge role in how we’re perceived by others and feel about ourselves. Scleroderma can cause significant dental damage. Some recent research is delving into this issue, which points to a correlation between digital ulcers and so-called Multiple External Root Resorption (MERR), but it needs more attention and a search for mitigating options for those of us who must deal with this rare but particularly disfiguring and debilitating aspect of the disease.

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: hybrid

Little Victories

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No doubt. It’s winter here in New England. Over the weekend, we got about a half-foot of snow, plus some icy rain. Our bird feeder’s squirrel-blocker, a plastic hood that hangs above the feeder, looked like a snow hat. And it’s cold, hovering in the ’20s F. Today we plunge into single digits.

Despite the bitter weather, which I find rather intimidating, I forced myself out the door twice in the past few days. My first jaunt around the neighborhood, on Saturday afternoon, was my first venture out of the house since before Christmas, because of that darn respiratory, non-Covid virus that dogged me for a good 10 days. It felt so good to breathe fresh air. And I finally have my voice back.

Monday afternoon, I ventured out again, along my half-hour route. I was bundled up in my warmest, full-length down coat, lined boots, scarf, wool cap, aviator hat over that, and mittens. I looked ridiculous. But I really don’t care. It’s a priority to get out and walk whenever I am able, to clear my brain, stretch my legs and back, move my joints, and exercise my heart. I definitely feel better when I get home.

I also feel just a little bit invincible. (Yes, I know, that’s an oxymoron.) If I can get out and walk a half-hour in freezing temps, then I’ve overcome my Raynaud’s and scleroderma for another day. And that, Dear Reader, simply feels great.

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.

Speechless

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So, just in time for New Year’s, we had yet another Covid scare this past week. Al came home two Fridays ago feeling a bit off. Sure enough, by Saturday morning, which was Shabbat for us and Christmas for many others, he was totally congested and starting to cough.

Fortunately, I had a rapid test at home, and his result was negative. But by Monday evening, my neck glands were swelling and my throat began to feel scratchy. He continued with a lot of coughing and other cold symptoms, and I proceeded to lose my voice to laryngitis, plus develop congestion, coughing, sneezing, and GI issues. Aches, chills, and fatigue for a couple of days, too.

Al’s rapid test was confirmed midweek by a negative PCR test, and I got my negative test result back on Sunday. But as I write on Monday evening, my voice is still quite hoarse. Al is doing much better, and I’m approaching normal, otherwise.

I have not had a respiratory virus like this since I started masking almost two years ago. I have no idea how we got it, but it goes to show that there are still plenty of other nasty viruses circulating, just like every winter here in the Northeast.

I also have come to realize that my Sjogren’s Syndrome is playing a far bigger role in how I respond to such viruses. Having a dry nose and mouth, not to mention dry eyes, makes it that much harder to flush the germs out of my sinuses. And to recover my voice.

So, I’m pushing fluids and limiting conversations. And being very selective about going out in public. I ordered new KN95 masks for each of us (I need kid’s size, because my face is so narrow).

Hoping we’ll get lucky and avoid Omicron. But at least I know my immune system works against a random virus. With my full set of vaccinations, I have a good shot at fighting off this latest variant, too, if what seems like the inevitable happens.

Here’s hoping, by the next New Year, this will all be a fading memory. Stay safe out there.

Post Script

With this post, I have been writing Living with Scleroderma for ten years. My first entry was on January 3, 2012. Hard to believe that what began as a way to finally come to terms with this strange and rare disease publicly and to share what I’ve learned with others has evolved into a decade’s-long chronicle. At some point, I’ll run out of things to say (even without laryngitis!). In the meantime, thanks to all of you, Dear Readers, for sharing the ride.

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: Arwin Neil Baichoo

What I’m Grateful For

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What a difference a year can make. Last Thanksgiving, our younger daughter couldn’t come home from Philly because of Covid risks. We had a small celebration with our eldest, who lives only an hour away. But the holiday was overshadowed by all the uncertainty and infections and deaths wrought by the pandemic.

This year, we’re looking forward to all four of us being together on Thursday and to seeing extended family over the weekend. We’re all vaccinated and boosted, so I’m much more relaxed about it than I was last November.

So, of all that I’m grateful for this holiday—our family, dear friends, a nice home in a peaceful neighborhood, a supportive community, the ability to work for myself and pursue my own writing, relative good health despite scleroderma, and more—the thing I am most grateful for this Thanksgiving is the Covid vaccine.

It is an absolute miracle. It is worth the temporary side effects. It prevents serious illness. It saves lives. It has protected me for many months, now. I fear how I would have fared during the Delta wave this summer without it. As cases again surge in Europe and here in the U.S., primarily among those who are not vaccinated as colder weather drives us indoors, I profoundly hope that more people will realize the incredible gift of this scientifically sound and safe vaccine, and get protection for themselves and others around them.

This is my 500th post on Living with Scleroderma. I could never have imagined, when I started this blog on January 3, 2012, that I would be writing about surviving a global pandemic nearly ten years later. Just typing that sentence is mind-boggling. We can never know what is coming next. My hope for you, Dear Reader, is that you make the most of each and every day, whatever it brings—and bring your best to it. That’s really all that any of us can ever hope to do.

Be well, and happy Thanksgiving to all who celebrate.

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: Eric Tompkins

Falling Back

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On Sunday we made the big shift, setting clocks back an hour to Eastern Standard Time and befuddling our brains in the process. Wait, the sun is nearing the horizon and it’s only four o’clock? Every year we go through this rigamarole, and every year I feel the darkness settle.

Sunlight in November is precious. I used to hate this month when we turn back the clocks, bringing nighttime all the more near. But in recent years I’ve come to appreciate it, despite too-early sunsets and crumbly brown leaves. The light is stark. It casts bare branches silver by day and coats them gold by late afternoon.

Nowhere is November light more beautiful than on Cape Cod, where Al and I spent the past weekend. We walked beaches at sunset, nature preserves at Noon, rediscovered a beloved bookstore frozen in time since the sixties, ate many good meals, and just enjoyed a much needed break. Here are some of my favorite photos from our trip. 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.