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.

Title?

My 9 month post-op appointment was set to be on 8/31, but due to work I've pushed it back to 9/22. Right around my 6 month, I was in a car accident where I sprained my neck and Dr. Piper was unable to determine if anything changed with my jaws because of that. I'm really nervous and excited for this one, and have been looking back on all of the months that have passed since December.

I remember deciding to go through with my surgery, and the amazing efforts of my family and friends to help me through it financially, physically, and emotionally. I remember being so nervous in the hospital, waiting my turn, and running three hours behind. I remember waking up to my morphine pump, face wrapped in ice packs, mouth completely banded shut, smiling up at my family. I remember my night in the hospital and my mom sleeping on the hospital bed right next to me, and my amazing nurses. I remember the next day, and few weeks to follow that were so hard to adapt to; only taking my splint out for 15 minutes at a time, racing to eat, brush, take medicine, and band the splint back in. I remember the first time someone made fun of me, and meant it. I remember losing the job I had accepted two weeks before my surgery because they didn't like the way I talked with my splint it. I remember job hunting and interviewing and wanting to enroll in classes right away, because I don't do breaks and relaxing very well...

I remember it all so clearly, like it was yesterday. Every hard decision, small victory, tear of joy, tear of sadness, tear of loneliness... and moment of pride in myself. Looking back, it was all so hard, and life-changing, but I rolled with it and got through it, and here I sit almost 9 months later. The time has flown by and I can't wait to see what is in store next... As long as it isn't another surgery; that I could wait on.

I've had plenty of really happy moments, like meeting people who have only ever known me with bright shiny braces, a huge splint banded in my mouth, and an impossible lisp that you cannot interpret unless you read lips perfectly. I still know those people and love that they still treat me the same way that they did when we first met.
Moving to St. Pete, having my world turned upside-down, and adapting to it all is another one of those moments. Missing my family and being filled with the biggest, sappiest, most disgusting feelings of joy when I see them. Landing a job that requires tons of talking and working through the excruciating pain of overworking my poor, beautiful, sparkly new jaws... Getting back into school to study something near and dear to my heart, radiography! (Not radiology; I do not want to attend years of med school and sit in a room all day staring at pictures and writing reports - not to knock anyone who does)... Find my way back into the sport I love, meeting tons of interesting people (good, bad, and funny) and seeing myself grow into a different person that I was just last year.

Not so happy moments include learning just today that my coworkers said to the rest of the staff after my first day, "Did you meet the new girl? Wait till you meet her. She's anorexic and can't talk." Being made fun of for what I consider the biggest blessing of my life doesn't change how I feel about anything, and those who get their amusement at the expense of others have more problems than jacked up jaws that require an expensive surgery and years of recovery to fix... So really, I lucked out. *Personality wise* ... *and sense of humor wise* *and I have awesome new and improved jaws wise* *and I eat donuts and pizza, and mocking any type of eating disorder makes you really kind of an ass, so I really came out on top here...wise*

I'm proud of my journey, proud of myself, proud of my doctors, my family, my friends, my adaptation, my relentless attitude towards recovery, my optimism (real friends know... I'm a pessimist. Sometimes the most pessimistic. Sorry), and most importantly, my body. It deserves for me to love it after all that it has been pushed through and getting me this far in recovery.

My heat pad-wearing, food-loving, endlessly struggling, weight fluctuating, non-anorexic, body. Thank you, ladies of work, who have no idea what I have gone through, thank you. I am happy. 

So I guess at this point, I can give an update on how I'm doing?

NOT per doctor's orders, I rarely use my Therabite as I don't feel any type of resistance or exercise with it anymore. Peg 6 anyone?
I've really backed off of the medicines; I'm still taking Relafen once daily as an anti-inflammatory, take 2 Klonopin with that in the morning, and no Trazodone/other at night.
My splint has been broken three times. I super glued it back together, dusted it off, and popped it in. It's doing great.
I only wear the splint to bed now. If my jaws feel fatigued or overly sore, or I'm going on a long car ride and want peace of mind, I add more time to my splint schedule.
I'm having less and less headaches, and learned that a lot of them stemmed from my neck pain, and the rest were migraines or almost-migraines (if those exist) which have certain triggers.
I can eat pizza, veggie straws, cheetos (the puffy ones), soft sandwiches, cheeseburgers (medium rare, no crunchy toppings), cliff bars, harder fruits (grapes), stir fry, cheese and crackers,
quesadillas, steak, and probably more things I've forgotten that I would not think I'd be eating for at least a year.

I have been having more migraines recently than I've ever had in the past. I started paying more attention to what triggers them, and it seems to be... tequila (I know), stress, sleeping in the wrong position (hurting my head/neck), or a lucky combination of two or more. Coffee helps. An occipital release done by a PRO helps immensely. Not drinking tequila is a great help. Sleeping flat on my back with my head elevated, great. Ice/heat, whichever seems fitting for that episode, and staying in a pitch black, quiet place is heaven.

Ennnnnd.

9.22.15

Six Months (And a lot of change!)

Here I am at the clinic again (not the first time since my three month appointment; I've been in for Chiropractic treatments and nerve blocks intermittently). It's my six month anniversary and so much has happened since March!

I guess to start with the bad, I was in an auto accident exactly one month ago. The word was never passed along to the clinic even though I called one of the staff the day that it happened, so Dr. Piper and everyone else was unaware. We had pushed my appointment back a whole month due to my work schedule but I was called up and beckoned in ASAP once they found out about the accident.

I'm currently sitting in the exam room (they're running a little behind) and just had my CT done. I'm really nervous! My airbags didn't deploy during the accident (a defect that I'm sure saved my fat grafts and I'm forever grateful for) and I didn't hit my head, but I have a sprained neck. The past month has been pretty painful with the intense neck pain, increased jaw pain, more severe headaches, and now back pain. Ice packs, anti-inflammatories and lots of resting have been my ritual.

Within the past week, I've reduced my diet to no-chew or very limited soft chew because it's just been too much. I'm anxiously awaiting Dr. Piper's arrival and the results of my CT scan as well as any word on the possible growth of my right jaw whose growth was stunted when I was a kid. In my last post, I mentioned Piper was hoping for it to grow, so fingers crossed.

To move on to the good things that have happened, I've played beach volleyball, started volunteering regularly for various causes, met amazing new people, settle into St. Pete even more, and started working primarily in an Outpatient Rehab Clinic, which I love. I also was paid a visit by an amazing, special, beautiful girl I met through the Piper network who had the same surgery and is three months behind me in recovery!

Resuming this post the next day after the appointment - Dr. Piper didn't mention anything about my jaw lengthening or growing and with everything that was happening, I honestly forgot to asked. He said it looked as if my condyles have softened (possibly from the accident) and I'm religiously taking a million vitamins again! Check out my new, awesome organizer for all those pills... Oh! And I broke my splint in half again... Super glue to the rescue.

He also said that my grafts are okay and that they weren't damaged during the accident. He said that from looking at my CT, I may have lost a little curvature in my neck.

He did nerve block injections which really helped immensely with the neck pain and headaches. I only iced my neck once today and had just a few come-and-go headaches that weren't too severe. I was pain free yesterday following the blocks, and my pain levels were reduced greatly today, which means the blocks worked great!

Worshiping my ice pack and waiting for the injections!

Once I'm at the six-week mark with my accident, we might consider different treatment options for my neck as chiropractic and palliative care haven't been advantageous to me so far. I'm going to stick with what Dr. Piper and Dr. Hobbs say and recommend, and see how it all goes. I'm hoping I can start working on range of motion, strengthening and correcting my posture at that point to get rid of some of this pain.

ALSO! Something that happened during my visit that was a total shock and I was completely unprepared for... I signed a form back in November agreeing that if I receive any blocks for an unrelated trauma, I would be financially responsible. So fast forward to June and I had completely forgotten about that form, and got slammed with a bill for almost $1,000. They didn't inform me ahead of time and I'm going to be billing it under auto, but it created quite a bit of shock! Something to keep in mind if anyone experiences the same! All of my other blocks have been covered under my global fee paid to Piper because they were related to surgery pains and recovery.

Dr. Piper increased my splint time (I was down to 10 hours a day including sleep and he bumped in back up to 12) which I am totally comfortable with! I've been doing more hours than recommended just for comfort and pain relief, so hearing from him that I was on the right track was good.

I wanted to back off of the soft chew meals and do more no-chew and stick with the consistency of eggs, soups, rice, soft breads, etc. but he disagreed and said that my jaws need the exercise.

All in all, I'm feeling much better today mostly due to the nerve blocks and being reassured that nothing has changed too much or is wrong to a concerning extent.

Hoping for the best from here on out! My jaws are doing great, it's just the all too regular aches and pains and now symptoms from the auto accident that are making me feel like I'm back in the chronic pain rut. I'm lucky enough to have an amazing support group who have been through tons of ups and downs and provide great insight on anything I might have a question about, and as always so much love from my family and friends. 

Anxious to see what 9 months has in store!

3 Months Down!

Yesterday was my three month post-op appointment with Dr. Piper, and today is my official anniversary! I was so nervous that I've wrecked the fat grafts over these past few months by doing various things, like forgetting to put my splint in on time, bumping myself in the face, even sleeping without it twice on accident. I've been eating probably the same 8-10 foods for the last three months, swallowing pills bigger than my head, looking like a pill junkie, but "I promise they're just vitamins!" and talking 6 hours a day at work with the worst lisp ever.

It's all been worth it, and yesterday confirmed that! My fat grafts are completely fine. They're doing great, and I haven't done anything to harm them. The big news is my reward for reaching 3 months; My last splint schedule was 1 hour 15 minute breaks 5 times a day, eating foods that I can swallow, no chewing. Strict exercise regiment with the Therabite and jiggles, and I FORGOT TO MENTION the traumatic event that was BREAKING MY SPLINT IN HALF.

Side story: it had a hairline fracture down the middle from being dropped in the sink while washing, etc. and it finally happened... I was washing it, and dropped it on the floor... I just wanted to sit on the floor with my shattered splint (and life, duh) and sob. But I picked it up, super glued it back together, and went on my way. I didn't get it lined up perfectly and it was pretty painful to wear for the two weeks till my appointment.

Anyway...

New schedule! I wear the splint for 16 hours a day including sleep and can plan this however I want. I can take it out and leave it out for a few hours, as long as the times in the splint are spread out somewhat evenly and I meet the 16 hour mark.

I GET TO CHEW ONE MEAL A DAY!

Guys.

I GET TO CHEW ONE MEAL A DAY.

One soft chew meal a day, the consistency of a meatball or similar. Dr. Piper himself said hamburger. I about busted out of that exam room and sped to the nearest 5 Guys! Sooo naturally, as you can see, I had a cheeseburger and fries and it was GLORIOUS. Medium rare, no onions or crunchy lettuce, tiny bites, and chewing like a weirdo who hasn't had a burger in 5 months, but glorious. In summary, I celebrated by shotgunning a beer, eating this cheeseburger, and watching 22 Jump Street.

Like a boss.

This morning, I chose donuts as my soft chew meal. This whole weight gain thing is gonna be a breeze from here...

The only somewhat negative news I got is that my right jaw (the side that was damaged when I fell on my face, and jaw whose growth was stunted), or condyle to be more specific, has less bone growth than Dr. Piper had hoped for. I may need jaw lengthening surgery at some point, but his plan is to keep an eye on it and have that talk when we need to. Of course, I hope we don't have to, but the whole jaw is so small; it looks insane on my CT scans, and I feel like half of my face should look huge compared to the other side based one what the bones really look like.

The reason for the jaw lengthening would be because my jaw wouldn't be long enough to support and maintain a corrected bite. I'll have braces after 9 months in the splint to correct my bite (my teeth only touch on the right side to tell you how off my bite is) and my jaw just wouldn't be able to accommodate and keep my new bite aligned -- worst case, though.

I like looking at best case better, especially after how this appointment went. It was so much more than I hoped for, and I cried after I ate my cheeseburger. No one knows this. Keep it that way. 

December-March consisted of soup, scrambled eggs, baby food, yogurt, smoothies, macaroni and cheese, and eventually (when I was brave enough to try new things) beans and rice, fish, and soft veggies; all foods cut into tiny pieces and swallowed whole. Struggling with the Therabite and forcing my jaws to gain the strength to open wider and wider. Slowly increasing time out of my splint from only 15 minutes at a time to an hour and 15. Hating my voice and lisp, and any time I had to talk to anyone. Smiling and laughing, but dealing with the annoyance of my lips getting stuck on my braces (okay, that's funny). Not being able to use my tongue... You take that for granted! 

March-whenever looks like eating cheeseburgers and meatballs and sandwiches and donuts, working out without feeling like I'm going to die on the spot (you can't breathe through your mouth but through one hole in the splint), being out of my splint long enough to have a decent conversation, good night out, and sense of feeling normal. I feel less fragile and less scared that I am going to mess everything up. I feel more hopeful that things will keep getting better. And am convinced that there will be more happy crying than sad crying. :)

I'm sure it'll continue to be frustrating and hold me back at times, but I'm really happy with my journey and the realizations and experiences I've had, people I've met, things I've learned about myself, and limits I've pushed. 

Happy three months to me!

I don't look back on things till I decide to write another one of these it seems, so here's how good things have been.

And yes, those things include margaritas, llamas, guns, and cinnamon rolls the size of my head.