I thought before I launched into writing articles and fully running the message board, I should explain where I have been for the past year, and what brought me back.
For those of you who don’t know me, or my story, I had bilateral TMJ replacements about two years ago. About one year after the surgery, I decided to move back to my favorite city in the world: San Francicso. When I moved, I was under the impression that I might be able to put some of TMJ disorder behind me. I had closed the TMJ Friends message board because it was just too much to handle for one person, and started out west.
After the initial excitement of a new beginning wore off, I found myself isolated. I also realized how much it helped me to set aside my issues and help other people. I never knew how much I would miss the support and community that was established with TMJ Friends.
Have you ever said to someone, “I have a really bad headache,” and their response was to tell you about how their headache was so much worse.. and then the conversation ends there? You might get a response like that on a support board, but it doesn’t end there. It always opens a dialog and prompts feedback from other people. I didn’t have many people to get feedback from, and certainly not anyone who really understood. Not that I blame them - how could they understand when they didn’t really know me?
San Francisco was a learning and growing experience. No one likes pain - we all want to try and change our situations and the circumstances that caused them. However, a new location doesn’t change anything! All you can change is the way you feel or deal with your circumstances. These things are much easier to handle when you are surrounded by people who love and support you.
I think Dorothy from Wizard of Oz said it best: “If I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because if it isn’t there, I never really lost it to begin with!”
I got my stitches out today and my surgeon says everything is going well. He will be writing the surgeon that did the implants to get a schedule for my physical therapy with the Therabite, and I will go back in 10 days for a check up.
Now comes the hard part - getting my opening bigger. Everything still feels pretty tight, but I’m trying!
Either the swelling has gone down a little bit, or I am getting used to my new big face. I think it’s the latter.
The pain on a scale of one to ten is a tolerable six. I still need pain medication but I don’t feel like crying. It’s hard to distinguish at this point what is surgical pain and what is residual pain left over from TMJ disorder.
This morning when I got up and spoke to my Mom, the strangest thing happened. After I said a couple of words to her, I found myself repeating what I said over and over and making different noises. My new joints vibrate when I talk, but only with certain words. I think I’ll either get used to it, or it will disappear once the swelling goes down. Will I be hearing radio stations next? And I hope if I do it’s not Mexican Polka music!
Most people ask me if the joints feel “weird.” I honestly have to say (besides the vibrating), that they don’t feel any different than my last ones did. I think this both speaks for the amazing construction of them and the incredibly talented surgeon who implanted them.
I still have questions about how they’ll feel as time goes on, like in weather changes - will cold effect me? Will I feel storms coming? I’ll just have to wait and see.
I think that the general rule of thumb is that after any major trauma to your body (and surgery definitely is a trauma), it will take about a year before you feel like it never happened. That isn’t to say I am going to just lay low for a year and feel sorry for myself. However, I do feel that having two major surgeries in such a short period of time has had a profound effect on me even though I may not know it at this moment. I also feel more beat up and more fragile this time around. Perhaps part of that is the let down of having it all over with, too. Friends and family tend to think that the surgery is over with now… I’m okay, and they get on with their lives.. when in fact, this is the period when I probably need the most emotional support. I’m glad to have all of you guys here supporting me, and I know I can count on you when I need you.
By the way, today I had a happy meal and some carrot cake. My tongue was very happy.
Hi everyone.. Yesterday I walked out of the ICU the day after surgery.. again. It took me a little longer this time because my surgeon wanted to make sure my opening was doing well. I can open to about 20mm (bigger than I could before this all started!).
This morning I had pancakes and eggs for breakfast.. my digestive system is a little shocked, so I can only eat a little bit at a time. Now it is time to do the Therabite… I figure eating is a good warm up. My face is REALLY swollen, my Mom says she has never seen it this big before.
I will be posting pictures later today… we lost the cord to transfer pics from the camera to my laptop, so my Mom has to go get a new one.
I know a lot of people are wondering - how do the joints feel? They do not feel mechanical or out of place… they feel quite normal (in a very sore, muscle spasm-y way). The scars are a lot longer than I thought they would be, but they look really good.. My stomach (where they took fat from to pack around the joints to lessen the chance of bad bone forming) doesn’t hurt at all. In fact, in the hospital I thought they had skipped doing that part until I saw the bandage.
Other than that, things are doing ok. I’m hanging in there & have been sleeping a lot. Let me know if you have any questions!
Stace is back at the hotel: real bed, real meds, no beep, beep, beep of the hospital machines all of the time. She CHEWED a grilled cheese sandwich for lunch, YUMMMM! She’s also using the Therabite every hour to improve her opening ASAP. I’m sure she’ll start posting herself soon, surprised it hasn’t happened already.
“Still in ICU, hoping to go home…..opening around 20mm”
That was Stace IM’ing me, so she is up and around…just no access to anything but IM yet. Home is the hotel (for now).
7:30pm: Stace is out of surgery, trying to negotiate going home with the doctor. That’s our Stace. Oh yeah, she can open her mouth wider than ever before.
We love you Stace!!! Congrats!!!!
Ok.. not today.. but maybe tomorrow, and definitely Friday. I was given the go ahead to chew ANYTHING I want when I wake up. Except for gum. I can’t have gum ever again… but being wired for the past month and a half has made me really appreciate the finer things in life…. like steak, cheeseburgers, salad, and the almighty popcorn.
The second stage of my surgery is tomorrow, June 22nd, at 10am. People keep asking me if I’m excited… well, I wasn’t, until yesterday when I was walking through Atlanta Hartsfield airport to go to my gate. I am excited now. I’m excited for the prospect that this could be the end of my personal journey with TMJ disorder. I don’t want to get too excited though. I will be happy no matter what happens, because I *will* be able to open my mouth, and I will be able to eat pretty much whatever I want.
I have to be at the hospital at 7:30am, and they will admit me and take me to my room. Then they will take me to pre-op. I wanted to see the joints, and even keep the model of my jaw that they made from the CT scan, but I’m not allowed. My surgeon has to keep it. 
He said I could probably get my own model for $2,500. Yeah, right! I think I’ve paid enough for these things!
So, I will hopefully be back here blogging on Friday afternoon… like last time, I will have pictures for each day. Let me know if you have any questions!
