I’ve written about my TMJ Disorder several times before. You can read about it here and here, here and here. I thought I’d write a little more about it for Invisible Illness Awareness Week. Check out the website if you haven’t already. There’s lots of great articles and good information. Oh, and you can get the podcasts of the seminars!

TMJ Disorder is a very broad diagnosis. Dr. Bender has actually diagnosed me more specifically with a sleep disorder and facial pain and some other medical jargon that I can’t remember now. For more information about TMJ Disorder, check out The TMJ Association website.

I’ve noticed recently that it’s becoming harder and harder to whistle. It’s not such a horrible thing. I don’t need to whistle. It’s just an example of how my jaw and mouth isn’t working properly. Also, I’ve been having trouble enunciating the past week or so. I’m sure it’s just because David has been in such bad shape, and I’m stressed. I just don’t want anyone to think I’m slurring my words ’cause I’m drunk.

Last week the chiropractor asked me how I was doing, and I asked him to fix my jaw so I could eat until I’m full instead of eating until my jaw gets tired. He did a big, painful adjustment on my jaw. It seemed to help.

I dread seeing the dentist next week. It’s very hard to keep my mouth open for a cleaning, let alone fillings. I had a good dentist who understood how painful everything is for me. I had to have four fillings (My last set of molars never came in all the way. They’re hard to reach and clean since I can’t open my mouth very wide.) last year, and so he split the work up into multiple visits so that I wouldn’t have to hold my mouth open for too long.

With our current health insurance, we do not get to select our own dentist. The new dentist actually asked me, “Why do you think you have TMJ Disorder?” After I explained my situation to him, he tried to sell me orthodonics to correct my open bite and “infantile swallow” which he said would cure me. I explained that I’ve had two sets of braces, a bite guard, multiple retainers and a recent consultation with an orthodonist who confirmed that it was not in fact anything orthodonically causing my TMJ Disorder.

I’ve talked a little about this before, but the dentist and hygienist always want to see my night guard and tell me what I should be doing. Sometimes they’ve given me advice contrary to what Dr. Bender says. It’s always annoying when people who have no idea what they’re talking about try to give you advice.

Which brings me to another topic about chronic invisible illnesses. Ask anyone with a chronic or invisible illness and they’ll tell you: We get LOTS of advice. Everyone sends you emails with a “cure” for your disease. First, it’s impossible to try every single remedy we hear about. Second, I’m not interested in your multi-level marketing scheme.

What helps me the most is when people listen and then say they’ll pray for David and me. Some advice is helpful. Like my mother-in-law telling me to call the pharmacy and ask them to print out a list of all the medication we’ve purchased this year for our medical expenses when we were filling out the financial assistance paperwork. I had no idea they would do that. It was an enormous help. Or friends who’ve suggested great vegetarian recipes to help David limit his animal protein intake. That’s advice I can actually use.

Honestly, I don’t need any information on cures and remedies. I’ve already done more research than you have, plus we talk to the doctors at least every eight weeks, and we belong to several groups that would certainly let us know if there was a cure or even just a new drug. I know people just want to help. I appreciate their efforts and we’re certainly not mad at anyone. But it’s getting to be the family joke that so and so called with the magical cure. And then the response is a quote from the movie Horton Hears a Who we learned from my sister-in-law, Kristy.

And in my world, everyone’s a pony that eats rainbows and poops butterflies!

Related Posts:

• Invisible Illness
• My Jaw Hurts
• 2nd Week in New Jersey