I spend a lot of time trying to learn best practices for caring for my Sjögrens so that I can live well today and prevent as many medical issues as I can in the future. In fact, I would say that I’m very well-educated in product options, tips and medications. This doesn’t mean that I always practice perfect self-care discipline, but I certainly know what I should be doing.

Oral healthcare has not been an area where I have been lax! I use my Sonicare toothbrush, xylitol toothpaste and mouthwash, prescription fluoride toothpaste (and leave it on), and I use MI paste (calcium phosphate creme). I take Evoxac. I see my dentist three times per year and I brush after meals. And of course, I have xylitol mints throughout the day.

I have had one cavity the past twenty years…until now. I was horrified when my new dentist said:

“You have fourteen cavities that we need to fill, and the sooner the better!”

“What did you say?” (The language was much stronger in my head).  I was truly flabbergasted!

I talked to two dentist friends that are specialists in Sjögrens (but unfortunately not close enough to be my dentist) to learn that my previous dentist may have been watching these progress. But I have to say that I saw some brown discoloration and pointed these areas out to my dentist about a year-and-half ago, and he said nothing about cavities. So perhaps I did not have the dentist that I thought I had (it was the new dentist that took over his practice who informed me about my cavities). And perhaps my gut instinct about these spots being caused by dry mouth was on target.

Point one: You know your own body! If you don’t feel good about an answer you’re given, consider seeking a second opinion.

Because filling these cavities was going to be a true investment, I decided to talk to several dentists. I found a good dentist that does a good job and his pricing was in line with my expectations. He’s a bit old school, but he’s great. His prices were less because he didn’t have the super current technology. Although I like new technology, his technology was not antiquated and his approach to his patients was preferable.

Now on to the real reason I decided to share this information with you all… I felt (and still feel) a little bit dirty. As if I must not be taking care of myself and as if I have poor hygiene. Since receiving this information, I have had to work on the emotional aspect of not only the new cavities, but the realization that my Sjögrens is progressing and causing real oral damage. In fact, I see quite a few other areas where the same pattern of discoloration is starting. So I guess I better start saving some money for upcoming (and unplanned) oral work due to Sjögrens-Mouth. I will continue with the same solid protocol for my oral care, as I know it is recommended.

Point Two: We should not feel shame for something we cannot control, especially when we are trying so hard to prevent it!

So shame on you, Sjögrens! And shame on our medical system that does not think oral care is a major medical concern!

But there is no shame on me or you. #ThisisSjögrens


Head to sjögrens.org if you need tips on oral care. Look for Dr. Ava Wu’s tips that she presented at the National Patient Conference. I believe the information will be going up on the foundation site soon.

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