I'm not who I was.
Some of you already know all of this, and some of you don’t. It’s sure to be almost as enthralling as watching paint dry, so I won’t be offended if you pretend to have to use the bathroom and slip out the back door. But this is the easiest way for me to address the multitudes who keep asking. (Okay, maybe not multitudes. Perhaps multiples.) For the newbies, I’m not even going to link you to the laundry list of problematic neurological history. You get the vagueness of just knowing it’s there and not knowing what it is. Cuz I’m tired, and it’s long. Congratulations.
So the latest and the greatest of the medical mysteries of me involve my face. I’ve had noticeable problems to some degree in this area for, oh, 15+ years. (Insert a plethora of punny whats-wrong-with-your-face related insults here). If you’ve spent any time at all dealing with questions in the medical department, you know that you learn pretty quickly that the more you say, the more likely they are to pass the buck off on anxiety and dig no further. And when you want answers, you don’t want buck-passing. So depending on the doctor, primary concerns only are what come up, sprinkled with a little mention of “TMJ” if the history is specifically questioned. There’s only so much money to spend, and I’ve had bigger fish to fry (or so I thought), and therein lie the two primary reasons why I’ve put off treatment for so long. I’m not sure why I’d convinced myself that jaw pain should be automatically filed under the “it’s not that big of a deal” and “suck it up” departments, but I did. However, over the past few years, and especially the last year, the up-sucking hasn’t been cutting it.
It’s always been an exhausting effort to hold my mouth open for the dentist. I attributed it to my small mouth. (Once again, insert “but I thought you had a big mouth” joke here).
Hurting to lie sideways on the couch to watch TV has always been a thing. I’m not sure I ever knew that was abnormal.
More recently, I think it first started becoming more noticeable when I more consistently had to stop
yelling cheering at soccer games, lest I throw my jaw out or send searing pain through my ear/head/neck/face. (Lucky side-liners, you have been rescued from my “that mom”-ness).
I hurt after wearing earbuds. Weird.
I couldn’t read out loud to my kids without misery. Okay, that’s not normal. And it’s also a bit of a problem when you home-school.
I had finally joined choir back after a couple of years off. I made it through one semester. Barely. I had to quit.
And I felt like one big wimpy kid. It’s just my face, for pete’s sake. (Not you, actual Pete. Proverbial Pete.)
Some of you may remember this throwback to spring break: Yeah. This pic of me and my dad pretty clearly indicates that my face is abnormal. There’s no denying that one.
I have progressively cut back on all things vocal. Helping to lead worship on Tuesday nights had at one time been the only area I hadn’t backed down from entirely. I’d take breaks, but I didn’t quit. It put me in tears to press on, but so would not participating. Besides, I was only in the background anyway so if things got too difficult and I couldn’t keep going it would be okay… that was until the regular worship leader would have to be out of town for work and our other back-ups were booked-up and I was the only option left from our crew to do the primary leading in the vocal department for a short season. It’s funny how God will prove himself faithful when you have nothing left to give. When I am weak, He is strong. It’s like he says, “Now that you’re finally empty, I can fill you up.” And I can truly say that if anything good came out of that, it wasn’t of my own ability. There is not one iota of false-humility or “humble-brag” in this claim. I cannot stress to you enough how much that ability has not been there at all, coming from me. So for a time, He made me trust Him, and he called me to obey. And I did. The dependency was good and God was great.
Now I’m in a different season where He has taken me off the platform entirely for a little while longer. I just can’t. I’ve tried, and it’s proven to be a terrible idea. Not only is there the pain factor, but the way things are positioned it’s like learning a whole new instrument. I can barely make it through a few words corporately even without a microphone in front of my face, so I’m sidelined for a little while longer until God says “go” again. It hurts my heart a little, but it’s a different kind of dependency that is equally good.
Back to the science of it…
I have been referred to a pretty awesome specialist. I have learned a lot of things. It took me over 4 hours to learn what I did, so I won’t fill you in on everything here. But the gist of it is that my jaw is locked out on the right-hand side, and my “shock absorber” is out of place sitting in front of where it belongs. That disc is attached to a bundle of nerves that it’s pulling through the space (where the disc belongs), and in turn my jaw is bone grinding on nerves on bone. One of the most hopeful things is that TMJ could potentially be causing, or at least contributing to, a lot of my neurological problems from the shoulders up. So fixing my face *may* fix more than my face. Or at least help to some degree. Upon getting the x-rays back, one of the first things the doctor did was to look me directly in the eye and say, “You have a reason to hurt”.
So there’s the crushing nerves and out of place shock-absorber thing. I also learned that I have arthritis in my face. “Do you get choked a lot, have a hard time breathing, or feel like there’s something stuck in your throat?” he asked. Yes, actually, quite often. (Again, something that has always been attributed to anxiety. Which, I do deal with anxiety. I’m not denying that. But I can typically tell what is caused from anxiety and what is not, these things being the “not”.) “I can see here in your x-ray where the TMJ is causing your throat to narrow and cause those problems”. Huh. Interesting. He also specifically mentioned a cold-washing tingling sensation in my head that I have described to so many doctors only to be met with stares. Guess what? TMJ nerve-crushing culprit strikes again. Flashing lights, ringing ears, headaches, electric shock pain and more… all that jazz… potentially TMJ. The biggest thorn-in-my-flesh in the shoulders-up department is my dizziness. It can get pretty severe. I’m thankful for my “tribe” that understands me, and has low-expectations of me (in an accommodating way, not a defeating way), and who picks up my slack for me. Today is one of those days where I had to make the call not to drive. I’m grateful that someone stepped up to drive my child for me, so she didn’t have to miss out on her beloved swim practice. Almost always, someone comes through for me in the whatever. I am truly blessed and genuinely grateful. I may look stoic or unappreciative, but that’s just me trying not to hurt my face, or being dazed and confused. Really, if you have ever helped… so. much. gratitude.
Now what? Well, “Phase 1” is non-surgical (yay!) realigning of my jaw using splints.
I have a daytime splint and a night-time splint. The daytime splint is kind of like a wire retainer on the bottom, except it has material built up on it to position my jaw where it needs to be. (Getting that made tasted pretty much like drinking a nail salon). I have to wear it all the time during the day, even while eating. My actual teeth are never to touch each other. I have a pretty stellar lisp now. (And if you know misophoniac tendencies, you know how much I’m getting on my own nerves. If you don’t, here’s a page I pilfered for my own enjoyment out of J’s “Oodles of Doodles” book to give you a clue.)).
My night-time splint is kind of like two clear retainers (top and bottom) fused together in one piece. I will have to wear that one for the rest of my life. The last time I asked how long Phase 1 was expected to last for me, I got, “Well, typically 6-12 months, but your condition is a little different and more severe than what we usually see. I’m not saying it will take longer, but I am saying don’t be surprised if it does.” So there’s that. (Phase 2 will involve orthodontics pulling my teeth up into proper position, at which point I will be able to add having braces again to things that contribute to people thinking that I’m still a teenager).
I’ve had my appliances for almost 2 months now. Have I noticed improvement? A little. I still have significant sleep issues, but I do feel as though when I am sleeping, the quality is somewhat better (slightly). My jaw opened to 20mm at the last appointment (a regular person opens 45-50mm). But that’s an improvement because last time I only opened to 10mm. So that’s progress. Pain-wise, some has greatly diminished, some hasn’t changed much, and then I’ve gotten more severe pain in all new places from the shifting of my jaw to be on center while stretching something that’s still locked. Chewing is still a challenge (part jaw-based, part splint-based). So it’s a slow progress, but it’s progress.
All that said, if you know me, you know that I am certainly not looking for pity. No need to comment your “I’m so sorry’s” out of obligation. Send up a prayer any time you feel led to, but no need to fawn over me. This post is purely to inform those who want to know.
Furthermore, let’s get off of me for a moment. My father-in-law has been in the throes of radiation and chemo for a stage-4, supposedly non-curable cancer, and my heart breaks for him. I’ve not mentioned it more because he’s never seemed to be one to care for excessive attention, but if you could pray for relief and pray for a miracle, that would mean the world to all of us. My face is nothing in comparison.