Tag Archives: TMJ

Sorry, Reality, This Isn’t a Good Time

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This summer is the gift that keeps on giving. I had my teeth cleaned yesterday; an activity I despise anyway, but which has become harder due to EDS. My hygienist murmured that she didn’t remember what we did last time but if we needed breaks we could take them. She started to torture me and I politely raised a finger. She stopped.”You gave me bite blocks last time.” Oh, she says, she must not have written that down. Except then she looked at my chart and she *had* written it down. My tolerance for any issues right now is well below zero. In the time she was saying she didn’t remember, she could’ve been looking at my chart. I am a font of magical ideas, man.

My dentist came in at the end and asked about my jaw, which I reported is making a sort of scraping sound when I open it. He said this was the joint rubbing against the bone and if I developed a lot of pain or found I was losing function to make an appointment. Then he said, “I’ve been researching Ehler’s Danlos and wow, that’s an interesting malady. Do you also have Sjogren’s? That’s pretty common in patients with what you have.” I said I had wondered, as for about the last six months or more, I wake up in the middle of the night because my mouth is so dry I can’t swallow. “Yeah,” he said, “You probably do. We’ll start you on a high flouride toothpaste that you’ll brush with at night and then don’t rinse your mouth.”

So naturally I trot home and take a hard look at Sjogren’s Syndrome and surprise! I’m pretty sure I can add it to my collection of EDS co-morbidities. I also looked up how to pronounce it, since the word itself offers few clues. It’s “Shoe-grens”. You’re welcome. There is a similar issue with Ehler’s Danlos, is it Aylers, Eh-lers or Eee-lers? I say “Eh” lers, which is probably wrong but I’ve heard every variation.

ANYWAY, Sjogren’s is an auto immune disorder wherein a person’s immune system has a meeting of the war council and pledges to attack the moisture producing glands related to mucousal membranes. So, dry mouth, dry eyes, dry nose, dry lady bits (giving new meaning to the treasured insult, “dried up old cunt.”). My mouth is terribly dry, which I had been thinking was pretty odd, given that I come from (and had been a member of) a pretty juicy family. My nose is also dry, and often I get cracks in there that make even the slightest magical gesture very painful. My eye doctor mentioned that my eyes were mild-moderately dry.

Sjogren’s is typically diagnosed and managed by a rheumatologist. You know, like the one I can’t see in Albuquerque. My options at this point are as follows:

  1. Do absolutely not a goddamned thing about it.
  2. Keep the appointment in Albuquerque and pay out of pocket.
  3. Text my PCP and ask him to call my sort-of former Rheumatologist here and see if he can smooth things over so I can crawl back to that guy and get his opinion on diagnosing the Sjogren’s (for which there is not a definitive test, rather, a collection of evidence that points in a direction, but only sort of).

I keep telling the Universe that I have more than I can handle on my plate, yet the universe seems to be an old cafeteria lady who is hard of hearing and keeps giving me another scoop of lukewarm mystery meat with gravy.

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Because Not Everything Sucks All The Time

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Last time I went to the dentist, my jaw tried to slip out on the right side and got about halfway there before I made it go back. That was just because I had experimentally opened my mouth¬†before¬†hygienist put anything in there. Long story short, I couldn’t eat anything solid for five days afterwards, and asked to be put on a 9-month recall. So it was with no small amount of anxiety and concern that I approached my dental appointment yesterday. I told the hygienist straight up that I was pretty freaked out about it, too, and had arranged my massage for immediately afterwards in the hopes that the massage therapist could help if anything had completely gone to hell.

Also, I would add, I HATE having my teeth cleaned. The scraping means I have goosebumps running up and down my body the entire time. The hygienist offered small bite blocks, that meant I wouldn’t have to work to hold my mouth open, which was brilliant. She gave me rests between each step. My dentist listened to the story afterward and we played the EDS Patient Game.

Dentist: Let’s get her some Ibuprofen

EDS Me: I can’t take any NSAIDS.

Dentist: Oh, okay, let’s get her some valium.

EDS Me: I can’t take anything in that world, my PCP hooked me on them and I spent the summer withdrawing.

Dentist: Have you tried Physical Therapy?

EDS Me: They routinely injure me. It’s a no-go.

Dentist: Let’s set up a consult where we aren’t rushing, okay? I’m leaving you a bottle of wine at the front desk.

I’ll get back to that consult in a sec, but the positive thing is that while I was not pain-free after the appointment, between their measures and my massage therapist, I can eat and nothing is subluxated or dislocated. That’s a win.

I did set up the consult, but I have my doubts. My teeth only touch in two places, so I know a big piece of trying to help the jaw stuff is going to be braces. But I a) am about to put braces on the youngest child so $$$ and b) cannot take anything for pain so: suckage. I will hear him out but I suspect it will be kind of like the EDS Patient Game all over again. I like the hell out of my dentist and not just because he gives me booze, but I am WAY nervous, as usual, about attempting to do anything.

But I can eat food today, and that’s a hell of lot better than I expected.