Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Here We Go Again

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So, it’s back to my dentist again tomorrow to get my new implant crown readjusted one more time. Sigh. Twenty-four hours after Dr. K cemented the new, improved version into my mouth, I felt it wiggling. I called the office and asked to have his partner, Dr. F., take a look.

This is complicated. Dr. K has been my dentist for more than 20 years, and he’s been a great resource, fully understanding my issues with scleroderma. My mouth is tight and hard to work with. Then there are all the resorbed teeth requiring implants. However, the reality is that his fingers are too big to easily maneuver when dealing with a crown for a molar. Dr. F has small, deft hands, and she also doesn’t get stressed like he does (he worries he’s hurting me—which is sometimes the case, if he stretches my lips too much).

The silver lining is that Dr. K has been cutting back his hours as he shifts into retirement. Last Monday when he installed the crown, he told me it was probably the last time I’d see him because he was cutting back even more. I thanked him for all his good help over the years.

And, with a clear conscience, the next day I asked for an appointment with Dr. F to tighten up the crown and finish the job. She’s been his closer when my mouth presented problems before, and I have total faith in her.

Self-advocacy with medical professionals can get a bit dicey when you have long-standing relationships with your providers. But, ultimately, you have to stand up for what is best for you. And be sure to say thanks along the way.

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: Kevin West

Until Next Year

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Last Wednesday night marked the beginning of Passover, when we always host the first seder for our extended family. Al’s first cousins always host the second seder. This is a family tradition that dates back to Al’s mother and her youngest sister, who alternated hosting the two festive meals every year, when we join Jews around the world in retelling the Exodus story.

Even though we share the meals between the two families, it’s still a lot of work. My hands were in rough shape as the holiday approached, with six fingers in bandages, due to persistent ulcers and calcium bits that had chosen just this time of year to travel up to the surface and hang around without popping out. This feels like having grains of sand stuck under your skin. No fun.

Fortunately, our younger daughter had already planned to come up from Philadelphia to help out with the cooking for three days. Yes, it takes that long, because I can’t help myself. I always plan a very special meal with lots of courses. Even when I’ve mastered all the recipes and know how to pace myself with the meal prep, it’s just a lot of work.

So, we cooked and shopped and cooked together for several days. She did the lion’s share of the chopping and mixing and frying and baking, while I directed and handled a variety of smaller details that were essential for the final meal. Here’s what we made: Egyptian charoset, which is a mixture of dates, raisins, ground nuts and sugar; hard boiled eggs; pickled salmon (a family favorite, as an appetizer); Egyptian potato soup; spinach patties; roasted carrots, beets, and turnips; a salad of oranges, avocados, red onions, arugula, and a cinnamon vinaigrette dressing; apricot sponge cake, chocolate chip meringue cookies, strawberries, grapes, and chocolate for dessert. And, of course, there was plenty of matzah, including gluten free.

It was a hit. Worth all the effort. We had fun cooking together, though I was quite tired afterwards.

Learning how to ask for and accept help is a crucial part of living with scleroderma. I’m very grateful to our daughter for being so willing to step up and keep the family tradition going. Until next year . . .

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.

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