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!]

15 Months

It has been what feels like an eternity since I've written an update! I have been doing so well, with only a few minor setbacks. I last saw Dr. Piper on December 15, 2015 for my one year post-op appointment.
Everything looked really great and I hardly had anything to ask him. It really just felt like I was popping in to say hi! I was thrilled to really have nothing to report, and he seemed pleased with how everything was going.
At that time, I was still having a lot of neck pain. I started seeing a new Chiropractor who did manual adjustments which I haven't had in so long; I've been offered e-Stem, heat, and massage, but no actual manipulation of my spine. It worked tremendously! I have so much more relief now, as of today, than I have in the last year. The adjustments did trigger migraines, so that was a really hard two months, but barreling through it really allowed time for my treatments to help my neck.

I am seeing Piper next Monday, March 14th. One of the minor setbacks I mentioned earlier is that I was struck in the face last week :( I was getting a massage, and while she was rubbing my shoulder, her hand slipped and she popped me right in the jaw. Increased pain like crazy! I've been worried about it and so looking forward to this appointment. I'm worried that something could be wrong as the pain has gotten worse and has become bilateral instead of just staying on the side where I was hit.

I'm in orthodontics now to correct my bite, not wearing a splint, but rubber bands on hooks. Wearing the rubber bands helps with the jaw pain, but gives me headaches from the tension - right now I feel like I can't win! Hopefully seeing Piper next week will answer some questions and give me something to do other than getting back on Klonopin and Relafen (recommended by Jeff; I've been off these meds for months).

Also, the Piper Clinic has a ton of new staff members and they are all awesome from my experiences so far! I live close, so I'm always calling, scheduling my Ortho appts. on the days Jackson works out of the clinic, and stopping by to say hi. I had the pleasure of meeting three women who were one day post-op at my last Ortho visit and that was awesome. One of the women recognized me from Facebook! - Is it wrong that I was slightly offended that their mothers began whispering that I probably thought they were all crazy because of how they talk with their splints in? Regardless, I jumped in and told them I was a year post-op so no need to say I don't know what it's like!

This crazy journey has so many ups and downs, but the relief I feel and how much my life has been changed is worth every challenge thrown at me.

{happy place}

**UPDATE**

3.14.16
Today, I saw Dr. Piper in office. So many staff changes!! I met new people in the office as always, which is one of my favorite parts!

We did a CT scan which shows that my right condyle is still very fragile and has less surface area than the left. I've slacked off on the Calcium and Vitamin D supplements, but he really stressed the importance. I am to continue orthodontics to see how I tolerate before considering another surgery to lengthen my jaw on the right side. The CT also shows that my neck is once again a mess. He recommends extensive chiropractic work right away for my entire lumbar and cervical spine.

My masseuse fiasco has stirred up my sympathetic nerve system tremendously. He's now stating that I have a sympathetic nerve disorder, that I am very sensitive to trauma, and has prescribed Lyrica to slow nerve conductions to help with all of the pain in my jaw, neck, and ears, as well as headaches.

The trauma has cause muscle spasms, and increased pain, which he's hoping the Lyrica combined with Relafen and Klonopin will help. I don't like Klonopin but he wants me to stay on it. He says that I'm wired backwards as I don't want to try any medications and don't get too much relief from them,  yet things like putting elastics on my braces are my preference and reduce pain.

I had a loose wire (long story) that has been stabbing my cheek for a month and the amazing soul that he is, Dr. Piper fixed it so no more cheek stabbing! It puts me in a horrible mood every time that the wire stabs me repeatedly and makes my mouth bleed and swell up, so I'm so happy he did that! It's the little things.

On top of all this, he wants me to research Ehlers-Danlos Syndrome as my joints are very loose (always have been) and make me more susceptible to injuries. He grabbed my wrist in the middle of the conversation and said "this is what I'm talking about!" - hyyyyypermobile joints are my thing, apparently.

 Good news though, is that my graft space looks good and that I'm "holding the grafts tight." He's pleased with how they are doing, but is pretty concerned about my neck and back, and sympathetic nerve system. I'm going to have a hard time choosing what to decide about the chiro - I see it mostly as a necessary evil and it's so hard to find someone to trust.

Bottom line: I feel okay/optimistic about everything, and still love Piper as he is an incredible, miracle-working human who kicks ass daily at making people feel better and changing lives.

As always, my blog contains cheesy little quotes that I love and pictures that make me happy.