Tuesday, December 13, 2016

Happy Anniversary!


Now for a real-time post... It's been two years! It all feels like a dream at this point, like all of the struggle and suffering I've been through is a distant memory. Of course I still struggle and suffer now, in different ways, and probably always will. It's just nice to see the change.

The last time that I saw Dr. Piper was September 13th. He was really happy with my recovery, and postponed my CT scan until January 2017 because he's confident that everything is going well. I'm still in braces to correct my bite, and still have my headaches and occasional flare-ups, but I can't complain about my jaw one bit.

Knowing that I've had a part of my anatomy which helps my jaw work properly completely removed and replaced, I didn't expect it to ever work perfectly - or the way that it naturally should. It doesn't, but I don't need it to. I just need it to stop making every aspect of my life miserable, and to stop preventing me from smiling, eating, talking, laughing, and living.

I still have pain - but it's mostly muscular. The muscles around my jaw are still adjusting, I think. There are things I can't eat, and most times, my jaw gets over-tired and over-worked with each meal. It's still a slow-going process, but I've come SUCH a long way from surviving on soup, protein shakes, and pasta in the food processor. (And no, I'm not exaggerating... Absolutely. No. Chewing.) Now I can eat sandwiches, meat, chips (shhhh), vegetables (cooked), and Dr. Piper also said himself that I can eat peanuts. Of course that does NOT appeal to me and I hate the thought of it, but that tells me a lot about how far I have come.

My flare-ups really correlate with migraines and what food I eat. Chewing causes muscles in my jaw and the back of my neck to fire and they sometimes feel so fatigued that I have to take breaks while eating. But, you know what? My jaw is not locked shut, preventing me from eating. I don't have a constant, stabbing, debilitating pain in my jaw and temples from not being able to open my mouth -- but having to force it to. I don't have to wrench my jaw open in the morning, halfway through the day, or when I want to eat dinner. I don't have to slip food in between my teeth because my jaw won't allow me to open my mouth. I don't have to wonder if anyone can EVER fix this instead of handing me another retainer, muscle relaxer, or the next crazy theory.

Dr. Piper has not mentioned anything else to me about possibly needed an additional surgery. This was a concern in the beginning, as we weren't sure of how things were going to go. This will always be in the back of my mind, though. That somewhere down the road, something may happen, or it may just be time, for something to need to be changed, or corrected. At least for the time being, I know I have a team of people I can trust to fix it.

I'm so grateful! Grateful for laughing, for cheeseburgers, for opening my mouth wide and feeling no pain, and for loving myself through all of this (hands-down THE hardest part).


Does anyone want to talk about migraines? I do -- they suck. I'm in the midst of (again) trying to find something to help. Next up: botox. And if it fails, I'll look fabulous in 20 years. Win-win. For now, the only management I can find is medications. Lots. And lots. Which is one of my least favorite things. Propanalol and Sertraline to prevent, Trazodone to sleep through the entire night, Sumatriptan at the onset of a migraine, Norco if all else fails and I need something to knock me out and put me to sleep, Relafen to ease inflammation in my jaw when that Trigeminal nerve starts acting up. Next up: Topamax in place of Propanalol (terrified because my first round with this drug led to a reaction that presented itself as a stroke). 

I. Am. Tired.

On a happier note... What's new (since y'all last read my ramblings) is that I've shifted my career focus to Nursing and start school in February. I could NOT be more excited and ready.
I've become dead-set on either moving to the mountains of Georgia, or the desert/mountains of New Mexico (Which I've never seen but if you know me, you're not surprised by this weird new idea). I really just want a front yard full of gravel and cacti, you guys. And if I run into Jesse and Walt, that'd be pretty cool too.



S

Delayed Update - June 2016 Post

June 2016

I've started to write a new post so many times, and wasn't even sure where to begin. I'm not sure where I even left off. I am 1.5 years post op. That is so crazy to say! My fat grafts are doing amazing. I ate apple slices today.


I yawn without holding it in, I sneeze without cringing in pain, and I eat things I really don't think I should, but never thought that I would again. The muscles surrounding my TMJ still flare easily, get tight, and are sore quite often, but to compare this to where I was 2 years ago, there's an astounding difference.
Although this is so exciting and amazing, when one thing gets better, it seems like another gets worse. For the past year, my migraines and neck pain have been simply out of control. Interfering with everyday life, taking away my friends, hobbies, and favorite things to do. My headaches are daily and I get at least one migraine a week. My neck and back pain is constant, and I've tried most everything I can think of.
At this point, I've seen a masseuse, physical therapist, acupuncturist, neurologist, pain management specialist, holistic doctor, and chiropractor for these problems. I've been through countless medications and bouts of trying something new, not to mention a whole lot of money. I'm desperately trying to find a doctor who understands me and is willing to help me understand and resolve my pain. It has been impossible to find someone who believes in the notion that we can get to the root cause of my pain and do something about it, other than maybe my chiropractor.
I started seeing Dr. Roe, a NUCCA Chiropractor towards the end of May. I haven't been under his care for a month, but he understands my pain, listens to me, and truly wants to treat the cause. My insurance is covering a small portion, but I want to see this through in hopes that I will get somewhere.
My headaches are up and down; I've began tracking them and there is no scale that does them justice. Rating them on a scale of "1-3" seems unjust. There's so much in between: pounding, stabbing, squeezing, nausea, dry heaving, sound sensitivity, too much pain to talk or eat, simply annoying, debilitating, exhausting, depressing, and endlessly frustrating. I'm questioning my quality of life.
Here's hoping that better days are ahead and I'll overcome this pain just as I did before.

[Written in June 2016... I just never got around to posting it!]