With 10+ years behind me, I thought I’d post some thoughts on what it has been like, and most importantly, what I’ve learned, in the hopes that you could skip ahead a few years by applying these tips to your life.
I’ve been through pretty much every treatment, medication, and self-care modality that I discuss here with all of you. Splints, braces, medications, injections, surgeries, physical therapy, etc, etc, etc. In 2006, I had my joints replaced with titanium implants.
I’ve talked with probably thousands of patients since I started doing advocacy. I’ve heard of every possible treatment, procedure, or medicine. Out of everything I’ve learned, some things have stood out, and I’m going to share some of these with you. I’ve noted them not as a rule…but a generalization. While they won’t be true for every single person out there….I do feel like they are true for many of us.
1. Find a patient who is at least one or two steps ahead of you in treatments or surgical procedures.
One of the rules of business (and life) success is having a trusted mentor that you can go to for questions and advice. This is also true for chronic illness. Having someone available to ask questions and to listen to their experiences is invaluable. Plus, when you just need to complain, there is no one better than someone who truly does understand what you’re going through.
2. Put an extremely high priority on pain management.
If I could shout one tip from the mountain top, this would be the one. Even for me, someone who is pretty knowledgeable and feisty when it comes to getting good care , I had NO idea my pain wasn’t managed….until it was. The difference between what I am able to accomplish with my pain managed is night and day. The other important thing is that pain management is not invasive. It won’t change your bite or put you in the position of having more surgeries down the road.
3. Pursue better….but don’t become obsessed with finding something that doesn’t exist.
You certainly have the right to feel better and pursue a better life…and you should! However, know that at the moment, there is no cure for TMJ disorder. There is no “perfect” treatment. When I say the word “know,” I mean, really sit with that statement and consider what it means to you and your treatment goals. There is no cure. How does this change how you feel about the treatments you are pursuing? This also does not mean you should lose hope that someday there WILL be a cure…far from it, actually. This is me telling you….giving you permission, to LET GO. You can have a chronic illness AND a fulfilling life that makes you happy. You don’t always have to be searching and hanging your whole life on treatments that may not help.
4. Realize that others do want to help you.
Let them. A well meaning family member’s advice may go in one ear and out the other, and that’s totally fine if you have already tried what they are suggesting, or you know it won’t help (just be polite, of course). On the other hand, if someone who has been through this gives you advice, consider what they are saying. REALLY consider it. Have you REALLY put in the effort to try everything you can to feel better? Have you REALLY listened? Spend some time thinking about this. I know it sounds ridiculous, but it can change your life. Are you really living your life and doing what is necessary to feel better?! Are you sabotaging yourself? Saying one thing and doing the complete other?
Will you EVER get better if you ignore the advice of those who have been through it before you? Will you EVER get better doing the same old things every single day that GOT you where you are TODAY?
I didn’t start seeing serious changes in my life until I started taking meaningful action on the things I knew I should do, and the things I said I would do.
Are you eating things that cause you pain? WHY?! You are the one that pays for it..start doing things that help, not hinder your progress.
5. No one cares as much as YOU do.
Nobody is going to care as much about your medical issues and general well-being as you will. So, it is your responsibility to learn and search for information that makes you the best patient you can be.
Half the battle is being confident in yourself and your ability to make decisions….so trust your gut instinct. Those around you take their cues from you. Unsure? They will be, too.
You do HAVE to make choices. You can either choose to drive your life and MAKE things happen FOR you….or you can have no control and LET things happen TO you.
Finally, even though I AM positive…It is not from a pollyana, Stepford wife, robot type place.
My goal is to share what has worked for me and the thousands of other patients I have talked to.
The bottom line? These are the things that have worked. Period.
The common thread that runs through the thriving patients is not one type of treatment, surgery, or medication.
It’s an attitude.
This is YOUR LIFE. Do whatever you can to THRIVE, feel better, and never give up hope.