Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

tooth resorption

Try, Try Again

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Every morning, I try to spend a few minutes meditating. I use an app, which is helpful and instructive. My mind wanders as minds do, but I am, over time, getting more adept at slowing down and focusing on my breath.

This came in very handy on Monday, when I found myself back in my dentist’s chair, because my new crown for my fifth implant came loose last week. No so loose that it popped out, but loose enough that it needed immediate attention. Of course, this all happened on New Year’s Eve, when no one could see me for several days. (Why do these kinds of issues always happen on a Friday evening or right before a long holiday weekend?)

In any case, it took two hours of poking and prodding by my long-time dentist, Dr. K, plus several tries to remove the crown and adjust its size so it would fit properly by his partner, Dr. F (she of the smaller fingers and more delicate touch). Ultimately, that did not work. I had been concerned from the get-go a few weeks ago that the crown was too big, and apparently my instinct was correct, because it never seated properly, which is why it loosened up.

So, now I have to return in a few weeks to redo the dental impressions, and then they will order me a new crown. Why didn’t this one fit—a problem I’ve never encountered before, thankfully? It was very hard to take the digital scans, because of my tight mouth, so that might have been the culprit. (For the repeat, we’ll do it the old fashioned way.) Or, as Dr. K surmised, the manufacturer that he’s worked with for years has changed personnel, and his trusted contact who always did things perfectly is no longer there.

In any case, at least there is a solution that I don’t have to pay more for, and the implant itself (what the crown is screwed into) is still solidly in place (my biggest concern). Everyone thanked me for my patience. I was grateful that I could breathe my way through 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: Filip Mishevski

Crowned

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And so, on Monday, I got my new crown for my fifth dental implant. It feels odd to have all my teeth once again, always an adjustment after nine months from extraction to finish, living with a space in my mouth.

As it was last month when my dentist and his team took impressions to make the crown, this was not a fun hour of my day. Lots of stretching my lips to the maximum as he manipulated the post into place and then adjusted the crown itself to fit properly. I had to stop him at one point because the stretching was really extreme, and I needed an break and some Vaseline to lubricate my lips.

But we got through it. My bite feels right again. I can speak more clearly—which surprised me. The tooth in question was the first lower molar on the left side, kind of in the middle of my jaw. Apparently, even a space there, not visible, affects your tongue and how you form words.

When I saw my dental hygienist last week, she checked, as always, the status of my other teeth, several of which have been resorbing slowly for years. One of them has progressed—or, rather, regressed—a bit since she last checked. Not a good sign. It has been somewhat sensitive of late, though fluctuating. I’m just hoping that it and its neighbor, the other troublemaker at present, can hold on for a while longer. I really need a year, at least, between these procedures, just to let my mouth (and pocketbook) recover.

Scleroderma brings many, many complications. Resorbing dental roots doesn’t happen to everyone, but I seem to have hit the jackpot on this particular problem. I am grateful to have excellent dental care. Both my parents had partial dentures as they aged, and I’m glad that’s not the only alternative any more. I just wish dental insurance covered implants, which it doesn’t. Given that my issues are caused by a disease, it seems ridiculous that there isn’t some kind of coverage.

Universal health care, anyone?

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: Akasha Dhage

Open Wider, Please

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So, on Monday I made another long drive for a not-so-short appointment, this time to my dentist for the next step in my latest tooth saga, measuring my mouth for the crown for my implant. While I’m grateful that there is a way to keep saving my teeth as I keep losing them to scleroderma-induced root resorption, the process is long, uncomfortable, and not covered by insurance, so it’s no fun and incredibly expensive.

This visit was to make an impression of my teeth, so that the crown can fit properly. I believe the last time I had this done, a few years ago, they were still using that icky goop in a metal tray that they stuck in my mouth (no easy feat). I had to bite down and hold for a few minutes to create a mold. The process always reminded me of my childhood orthodontist’s office, with its shelves of plaster dentures from all of his clients’ mouths, eerily grinning.

Now, however, they can make a digital image of your teeth with a probe. No goop. But the probe is not small and my mouth opening, due to scleroderma, is not big. And as one tech, and then another, did her best to scan my teeth, each had to stretch my lips and cheeks to get the full impression, a definitely-no-fun experience. Finally that first set of images was completed, and I was able to rest my mouth.

Then came my dentist, who had to remove the small metal screw-in cap from the implant and then screw in some kind of post that determined the angle of the new crown. But he was having trouble unscrewing the cap and screwing in the post, because his finger are large and my mouth opening is small. Again, no fun, and he was stressed because he knew I was uncomfortable and didn’t want to hurt me. Finally that stage was finished, and I rested my mouth again.

But the next step was to scan the post with the probe, and first one tech, and then the next, could not get the full image that was required, despite a lot of lip and cheek stretching. They were discussing the possibility of falling back to the goop mold (after all that?!) when my dentist’s partner, a women with small, steady hands, a great sense of humor, and a boatload of patience, came to the rescue. Turns out the post was turned the wrong way, so that’s why the image wasn’t registering. She deftly repositioned it, redid the scan, took out the post, and replaced the cap in a fraction of the time the whole procedure had taken up to this point. “You’re a trooper!” she said, at the end.

If memory serves, she had to come in as the closer last time around, too. Sigh.

Before I left, I set up a payment plan and my next appointment. I’ll have my new tooth before New Year’s, and it will be paid for by my birthday in April. Al and I could have traveled around the world with all the money I’ve had to spend on implants in the past decade-plus. Here’s hoping everything fits, and that I can avoid this whole mishegas for another few years, until the inevitable next 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: Jonathan Borba

Glad That’s Over

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I am writing on Monday afternoon on my laptop, as I lie on the couch with an ice-pack propped against my lower left jaw—ten minutes on, ten minutes off, to reduce swelling. This, after getting an implant, following my tooth extraction in May.

This is the fifth time in at least a decade, maybe 15 years, that I’ve had to go through this very expensive procedure, because of a scleroderma complication that causes the roots of my teeth to resorb. It is no fun, but the alternative is worse—a mouthful of missing teeth. The first two steps (extracting the dying tooth and filling in the hole with a bone graft, then implanting the base for the new artificial tooth) take about three months each to fully heal. The final stage of getting a custom replacement made is not as prolonged, but it will be at least December before it’s all completed.

Any dental work for me is a challenge. I cannot open my mouth fully because the skin around my mouth doesn’t stretch enough. Fortunately, I have found experts who know how to accommodate my limitations. My periodontist is precise and very careful with me, and he has the most calming manner, which really helps me endure the procedure.

Which involved a lot of local anesthesia, cutting open the gum around the bone graft, then drilling with three drill bits of increasing widths, then screwing in the implant with a tool that is essentially a small socket wrench, capping the implant, then filling in any spaces with collagen tissue and stitching up the gum.

The drilling is the hardest part, sending vibrations through my skull. As the width of the drill bit increases, the vibrating hum gets lower and louder. I’m always afraid that the anesthesia will begin to wear off, which it inevitably does at some point for me in these procedures. Fortunately, I caught it soon enough so he could give me more shots and finish with no significant pain. But his skilled fingers are big and my mouth is small and it is never easy.

I’ve started antibiotics as a safeguard against infection, and so far the pain is manageable with alternating Tylenol and ibuprofin. If experience is any guide, the worst is now over and it’s just a matter of healing up (and paying in installments over the next few months). Here’s hoping the next tooth that dies will hang on for a few more years.

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: Gratisography

Taking a Break

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I am happy to report that I got through my extraction of a resorbed tooth with no complications last Wednesday—no fun, but it’s done. So I was able to get my spring Covid shot on Friday, also without complications. My lungs have cleared from pneumonia,and I caught up a bit on rest over the weekend, along with enjoying a lovely Mother’s Day visit with my eldest in Boston. My finger ulcer heals slowly, but at least it continues to heal.

I’m also happy to report that my acting debut, a scene from The Glass Menagerie by Tennessee Williams last Monday night, was a success. First time I’ve performed in a play since the sixth grade, and I remembered all my lines (no small feat, giving how much harder it is to remember stuff at this age, especially with scleroderma brain fog).

And so, I will be taking a few weeks off for the rest of the month, to recharge. I’ll be back on this blog in June. In the meantime, Dear Reader, I wish you good health, good medical care, and that you make the most of each moment.

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: David Clode