I hesitate to use this as a place to vent, but I’m frustrated and a great way for me to process frustration is to force it on other people. Plus, they only allow so many characters in a facebook status, so there you go.
Lately I have been in pain. Like, constant, physical pain. Which is ironic, considering that I relieve pain for a living, but what can I do? I’ve been taking ibuprofen daily for the last couple of months, not really thinking much about it, because compared to the pill-popping I had to do when my arthritis was active, a few ibuprofen a day is like so many Tic Tacs to me. But lately, it has begun to get more acute, so after avoiding it for the last 8 years, I decided to look for a specialist. Which reminds me, here is a little back story.
Aside from the juvenile rheumatoid arthritis I had as a child, as I grew older, I began having extreme pain in my neck (which is different from being a pain in the neck). The pain led to an MRI, which led to a diagnosis of Temporomandibular Joint Disorder which at the time (the 80s) was a newer disorder, whereas today, almost everyone I know has TMJD. It’s like ADD for the face. When I saw the film from the MRI (I think I was 11 or 12), the doctor actually uttered this bit of pure diagnostic gold to me: “Well, Sarah, it seems that you have the jaw of an 80-year-old woman!”
And that was in the 80’s. So, imagine if you will what my jaw may look like now. If I had the jaw of an 80-year-old woman almost 25 years ago, I imagine that, now, underneath this gorgeous face is a festering mess of disgusting bone. However, the larger issue is that, over the course of 25 years, my neck has been trying to correct whatever has been happening in my jaw, so my neck is literally crooked.
So, over the course of my life, I have done what I can to treat it, which is to say, lately, not much. I have seen so many specialists that for the last 8 years I have actually had to take a break. I just got sick of them poking around in there. The end of the line for me was spending thousands of dollars and my 29th year of life in godawful braces as yet another attempt to alleviate my pain. They were (1) severely ugly, (2) severely painful (another great irony, eh?), (3) severely expensive, and (4) one big suckfest.
But I did it. I did it because the specialist of the year told me that this would be the solution, and I so desperately wanted a solution! So, I believed him and I did it. Close to the end of my braces time, John and I moved to another state, and I was referred to yet another specialist. Within 3 minutes of my first exam with my new specialist, I was told that being put in braces was one of the worst things that I could have done for my TMJD and that they needed to be removed immediately. And that is when I decided to take a break.
But not until after being fitted with a splint, which for me is sort of like asking a 450-pound man to put himself inside of a overhead compartment in an airplane. My jaw is so small and so damaged that I suffer through any type of oral treatment. Knowing this, I warned the new specialist, so they used a child-sized plate to create my mold, for yet another device I would have to somehow make sexy. And even that got stuck in my mouth and required two people and an hour and a half of time to remove, leaving me bruised and sore for days.
So, now, 8 years later, I have been given no other choice but to find another “specialist” (and here is where I begin putting “specialist” in quotes). What I need is quite literally, a new jaw. I need to have a full joint replacement on both sides, since the damage is so severe and my joint, bilaterally, is quite literally gone. It is no longer the 80’s, yet it may as well be. I made one phone call this morning to a local (and referred) “specialist” who, after listening to my lengthy history advised me to call another local “specialist”. This person told me that they don’t take insurance, and referred me to another “specialist”, who referred me to a surgeon while also informing me that they don’t take insurance.
Oh, and did you know that they actually use Botox now? On the jaw? It may be the only time in my life I do anything cosmetically surgical to my face.
It’s amazing to me that all these years later, there seems to be little if any change in what these specialists know about the disorder. I can handle not being able to chew gum, eat sandwiches, snack on chewy food, or use my mouth for vocal projection. I have grown accustomed to the fatigue that my jaw feels after singing for a long time, or in the morning after a night of clenching, or even during emotional moments. I have made adjustments, and they are keeping me from being a miserable puddle of agony. But hopefully, I am going to live for at least 40 more years, and I would like to know that I won’t be in pain the entire time. I have, like, NO JAW! And tendonitis in my masseter muscle! And no discs between the joints! And muscle atrophy! And cervical misalignment that causes excruciating headaches! And my face is totally crooked! I’m a freaking mess! Oh! And I have to brush my teeth with a snoopy toothbrush because all the others are too big for my mouth!
And if I do choose to have the very-scary and not-so-promising replacement surgery, I can only hope that by then, it will be covered by insurance, so I won’t be living out of a cardboard box and dumpster diving until it’s paid off. In the meantime, I would love it if just once I could find a “specialist” that has a solution for me that isn’t a guess, or ego driven. Just once I would like to have a doctor that believes me when I say that I will go into muscle spasm if I have to keep my mouth open for more than 3 minutes at a time. And just once in my entire life, I would like be without pain.