Almost 8 months post op; wow!!

Hello Everyone,

My goodness, I am SO sorry I have neglected the blog for this long! Life has been so busy lately with job changes and the like.

I am doing well in my non-TMJ related life. For those who asked, yes, I am in the midst of making some career changes. At the moment I am working a regular, poor paying job as a nanny to a beautiful two year old girl. This has been a good opportunity for me to appreciate that I do not do this for a regular living! While I LOVE being with this little girl, I miss the challenges, blessings, and opportunities to serve as a pastor. On January 24th, I have an interview for a chaplain residency position at the largest hospital in our area. Please, if you are able, say a quick prayer (or two) for me. This is my passion and I have been dreaming of doing this for many, many years. I am both excited and nervous to begin this part of my journey. If this particular hospital does not work out, I will be applying to others with the hopes of getting in to a good program.

In the TMJ world, things have been up and down. I am certainly still much better than I was prior to surgery, but some days feel like I have taken a thousand steps back. Last month I was kicked in the jaw (along one of my incisions) by a toddler at the daycare (used to work there). This seems to have set my recovery back quite a bit. Since then, I have had popping, clicking, and crunching noises return. I fear at least one disc may be displaced, but couldn't be sure without seeing the doctor.

My pain has been increasing as well, but of it I imagine is muscular. While I have been taking the steps to keep my stress at bay in the hopes of preventing the muscle pain, sometimes it just comes on no matter what! The plan at this point is to try and find a physical therapist willing to help me. I don't have insurance so cannot get a referral and payment would be a bit tough. I'm praying I can find something.

Other than that I really am doing well though. I know it sounds funny after all that but it is true! I am still better than before surgery and pray any further aggressive treatment can be put off for a long time. Whether that is the case, I don't know, but right now everything is one day at a time.

So, that is it for now! I will try and do better about updating, I promise. Since my jaw is giving me more grief I am sure it will be a loud and unwelcome reminder to keep you posted. *smile*

-Laura

Oh, and Melissa, YES! I would love to talk with you further. You are welcome to email me at: aandjfriends@yahoo.com if you would like to keep in touch. I will be praying for you and hope your appointment went well.

Ten Days and Counting

Wow, thank you so much for all the sweet comments and prayers. Sue, I am so sorry to hear about your husband. Your family is certainly in my prayers.

I am ten days away from surgery and the reality of it is beginning to hit. I have been busy nesting away, trying to get the house under control. Hopefully it will be neat and tidy before surgery so i'm able to relax and not worry about keeping it up.

My pain fluctuates from day to day. I have had a few good days recently which has been a blessing. It really is a rollercoaster ride and I just try to take it as it comes.

Work has been a bit tough to keep up with. I'm thankful that while I feel a bit behind, things are still getting accomplished. My goal over the next week is to get everything ready for my recovery. This includes writing a number of sermons and making sure all my homebound parishioners are visited. I think it can get done!

I'll be taking two weeks off and I pray this is enough. I know the recovery will be much longer, but I really cannot afford more than that. I pray i'm able to keep up over the summer. My concern heightens for my June schedule as i'll be at camp with my youth for a week at the end of the month and there is synod assembly only 2 1/2 weeks after surgery. Again, this will include pacing myself and taking breaks when needed.

So, that is it for now. Nothing too excited, just a lot of preparing and waiting. Thank you so much for stopping in. It means so much to know people are praying.

How Many More Days??

Ooooh, the pain is bad bad bad tonight! After worship services and then taking one of my youth out to Slinky Action Zone and dinner, I can barely take it. Even with pain meds, i've got the good 'ole throbbing and intense aches going on. I cannot WAIT for this to be over!

Earlier this week, my PT got me worried and a bit neurotic again. He said he thinks i'm putting a lot of stock into the surgery. I asked him if he didn't think this was going to work. He replied that he doesn't really know, but he does think that going in and messing with things doesn't usually help. I think he was just having an off day, because really, surgery does help many, many people. Like all the knees he sees in his practice; without joint replacement and such, those people wouldn't be able to walk like they do. I did get concerned though, because as we all know, there are so many forums out there that are radically against TMJ surgery. You read those horror stories and worry it will become you.

I believe i'm making the right decision for the most part, but there is still that side of me that worries. I don't want to damage myself anymore than I am. I also know however, that to live like this the rest of my life would not bring about a quality life. I will be turning 30 in July and to think i'll be in pain like this forever is a terrible, awful thought. I cannot spend my life on muscle relaxants, pain killers, nerve pain meds, etc. I need the chance to live joyfully. To be in this much pain after playing laser tag and going out to eat is ridiculous. I barely made it out the door let along through the four hours I spent with my youth. That is no way to live.

On a side note, my sister is no longer able to come out to help with surgery. However, a wonderful former classmate of mine from seminary is able to help. She has faced many health concerns herself, so will be a great person to be with throughout recovery. I'm so thankful for the many awesome people in my life who give so selflessly.

A Date with Destiny!

Hooray, hooray, I finally have a date! While it is not 100% confirmed, my surgeon is 98% certain surgery will be on May 20th. This is later than we had hoped, but coordinating with two surgeons and a hospital is a challenge. Praise God the waiting for a date is finally over!

Things around here have been fairly stagnant as i've waited. My pain has been not so hot, but thankfully my happy pills help when needed. I try to hold back as much as possible on them, but seem to be in greater need as the weeks pass on.

I was thankfully able to make it through Easter, a rummage sale at the church, and a 30 Hour Famine program with the youth over the last three weeks. These events were something I was dreading, as I didn't know if i'd be able to function at them. I'm so grateful they went well and I was able to go into autopilot to get through them. And even though I didn't feel so hot, I enjoyed the time with my parishioners. The Famine was especially amazing; the youth raised enough money for World Vision to feed a child for 8 1/2 yrs!

So now is the time to begin making all my preparations for surgery. After I get the final word on Thursday, we will be buying a plane ticket to fly my older sister out to help me through the surgery and the first few days at home. I wish she could stay longer, but as she is expecting her first child, she needs to get back to work to save up time for maternity leave. I'm incredibly grateful she is willing to come. My Aunt was going to be here for the surgery but since the date was moved back, she is unable due to work commitments. I hope she can come out for a fun visit soon though!

My house is a wreck but slowly i'm working through the chaos to get it cleaned prior to surgery. It would not be fun to have a messy house during recovery. There is so much to do to get it in shape I wonder how in the world it will happen! Plus the cupboards need to be filled with the proper mushy, liquid type food with a few chewable meals for my sister.

It is such a relief to know the end is in sight. It makes the pain much more bearable. I'm praying so hard this surgery will be the answer i've been looking for. My body needs a break from this. I know more treatment is inevitable in the future, but if there can be some sort of reprieve, i'm happy.

News in terms of recovery was discussed in greater detail with the surgeon today. He told me for the first 8 weeks or so, I will have appointments with him every 1-2 weeks. That is going to require a great deal of driving to Baltimore; should be fun! He also stated that when I am discharged from the hospital after surgery, I will have to go to his office for an appointment before going home. This makes me even more grateful to have my sister here. It would be a long day for one of my parishioners and I don't know who I could find that had enough time to help with it.

He stated it is going to be a long recovery from surgery. I have concerns about this happening so late in May. At the beginning of June I have a three day conference to attend wtih the synod. Then, the third week of June I have a week of confirmation camp with the youth. We talked at length about taking the proper precautions and limitations while there. I don't know how i'm going to do it as i'll still be in physical therapy three days a week, plus will most likely have an appointment in Baltimore. A lot to discuss and think about with coworkers.

Alright, it is 5am and I have yet to sleep. My jaw has not been happy and it seems some of my meds that used to make me drowsy get me wired. It is odd and frustrating. I laid in bed all night and just now turned on the computer in hopes that it would make me sleepy. It seems to be helping a bit. This lack of sleeping means I will be unable to make it into the office this morning. Ugh...more ways in which TMD gets in the way of living. Bummer.

Pain, pain, go away...

No, that is not a picture of me, but it is a picture of the "wonderful" new therabite device I started using today. And it only cost me $300 (note the sarcasm)! This fun little tool is used 5 times a day to try and increase my jaw opening. Currently my opening ranges from between 15-27mm; normal is 35-40mm. So, as you can see, I have a long way to go. My doctor typically only starts patients on this after surgery, but he wants me to start using it prior to get used to it, increase opening as much as possible, and to hopefully decrease pain.

Speaking of pain, mine is getting much worse. It is actually why I drove to Baltimore to see my surgeon today. I have some new nerve pain that goes into my gums and acts like the worst tooth ache imagineable. My muscle spasms are also changing; I can feel thumping in my jaw when it happens. The photophobia and sensitivity to sound is incredible. I actually wore sunglasses to a meeting earlier this week. Embarrassing yes, but totally worth it.

My doctor changed my muscle relaxant today to something that will make me more drowsy but should be better for the pain. I'm still on narcotics and will continue my motrin therapy. Thankfully i'm not taking many of the narcotics and he is not worried about my becoming addicted at this point. I'm so paranoid about it I hold off as long as I can on taking them.

I did find out today that my surgery will be at the Greater Baltimore Medical Center. We will not be doing it at Johns Hopkins for two reasons; there is another surgeon at GBMC that my doctor does TMJ surgeries with, who will be assisting with my surgery. Also, my doctor feels Hopkins rushes patients out too fast after surgery. I feel quite comfortable with his decision and this looks like a great hospital with a good reputation. It is one of the only community hospitals to be ranked by US News as one of the top hospitals in the nation.

I also found out I will be staying in the hospital at least one night. My surgery takes an average of 3.5 hours which isn't too bad but is still the longest surgery I have had. My doctor still believes the surgery should happen at the beginning of May. This weekend he is writing the letter to my insurance company, but we cannot request it until April 4th which is the two month mark with my splint. He said there is no way my insurance would approve it otherwise.

It is looking hopeful that my Aunt and possibly closest friend will be able to fly out to help after surgery. My Aunt would be here the first few days, then my friend would fly out for about another five days. I'm praying this works out as I could really use the help.

I've been in conversation via the internet with a surgeon from the UK. He is considered one of the top TMJ surgeons in the world. I asked him about how many patients on average need a total joint replacement following my surgery. Unfortunately, he said in the UK they don't even do my surgery anymore because of the lack of long-term success. Instead, they immediately go on to a partial or total joint replacement. He would rather not risk damage from multiple surgeries when my procedure has such little long term success.

While I found this news a bit disturbing, I know my insurance would never approve a total joint replacement without me first undergoing the arthrotomy. It is standard practice in the US to go as conservative as possible first, even if it ends up meaning more surgeries in the future. Plus, being only 29, I would rather not have a joint replacement just yet. The good news is this doctor in the UK says he is seeing more and more patients with the same joint replacement 20 years later. I'm grateful to hear this as I feared it was like knee replacements which often need replacing after only 8-10 years.

So, that is my update for now. I'm struggling with pain but am hopeful for this new medication to help. It was very good to talk with my doctor today and I feel a little more encouraged about the wait ahead of me. While it feels like the surgery is so far away, I know it will be here soon. I just need to take it one day at a time and do whatever I can to stay healthy, strong, and on top of my work. Thank you for your prayers and encouraging words; they mean so much to me.

Not a Good Week

This is my dog Caroline. In this particular photograph, she looks like how I have been most of the week. To say my jaw has not been agreeing with me just does not suffice. It has been a down and out bad week.

For some reason, I have been having setback after setback with my jaw lately. Rather than improving with the drug therapy, new splint, and physical therapy, i'm getting worse. I shouldn't be all that surprised however, as it has been the pattern with me throughout my TMD battle. I have a small period of getting better, and then it climaxes and goes back downhill. It makes me so sad everytime.

As I have spent the day after church in bed and on drugs, I haven't been able to stop thinking about how long I still have till surgery. I know, it is now probably less than two months (if we get the date we're shooting for, May 3rd). Compared to before, this should feel like nothing. It is just when you are in enough pain, every second feels like eternity. I really don't know how i'm going to be able to take the wait.

I wish with all my being this was over. I know there are people suffering greater ailments and pain than I am, but all I can think about now is my pain. I can't get past what I am experiencing to realize how small it is in comparison. I hate that I cannot talk without my jaw spasming. I hate that if I try to eat anything other than soup, oatmeal, or canned fruit my jaw feels like it is in a vice. I hate that even resting it is painful. If i'm not eating or talking, I have difficulty getting my jaw out of the clenched position. I hate that if I lay my head to the side on my pillow, it sets off the nerves.

I want my life back. I want to feel energetic, free to talk painfree and able to eat real food again. I miss being social and having the energy to go out and do things. It pains me when I have to cancel on people because my body won't allow me the freedom to have fun.

Alright, it is time for another pain pill. Thank you to whomever is reading this, for taking the time to read my rant. I'm sorry this is such a downer post; it is just how I feel at the moment. Journaling really is very therapeutic.

Getting Ready

Alas, I promise more frequent updates and I drop off the center of the earth again. I'm sorry about this but at least it is somewhat good news.

I am nearing the month mark (Thursday) with the new splint. The good news is I have moved past the crying everyday stage. My pain level has dropped about a point. Instead of sitting between a 9 and 10, I now fluctuate in the range of 7-8 (usually close to an 8). It has really helped me to continue with work, which is a blessing because i've been really worried about my job.

This week has been a little rougher than the past three. The nerve pain seems to be getting a bit worse. It is difficult now to lay with my head to one side, as I have some shooting pain. This is new and I don't know why it has started. My arm/wrist is also getting much worse. We aren't sure still if this is something related or not and won't know until after surgery (which isn't 100% determined yet but am pretty certain it will happen). I'm praying this rougher week is just a fluke and I can get back to the lower end of my pain (come on 6!).

With this small drop in pain i've been able to take less medication. I no longer have to be on it 24 hrs a day, though have yet to go through a day without something. Thankfully the narcotics sit there and are not touched everyday; they are only used for emergencies. Really, it is muscle relaxants and prescription motrin. I'm hoping the doctor might prescribe something nerve related at the next appointment, as that is where most of the pain is now.

My next appointment is this upcoming Monday with the oral surgeon. I'm somewhat nervous about it and don't completely know why. I wish my pain was better than it is. This 10-15% drop in pain is not enough to prevent surgery. I wish it was but I don't think I can live my life like this for long term. While i'm celebrating not crying everyday, I still hurt and struggle to function well. Without the pills, 24hr splint, soft food diet, and physical therapy 3X a week, I don't know what i'd do. I'm really tired of hurting all the time.

So, that is the update for now. I am praising God that I am able to function in my job though am praying for less pain so I can be an even better pastor. If you could pray with me on this it would be greatly appreciated. Hope you all are doing well and will be keeping you in my prayers.

So Unattractive!

I apologize for the length between updates. It has been a difficult few weeks, with my pain increasing and work load growing. The arthrocentesis did help to alleviate some of the muscular pain; the downfall to this is I felt the jaw and nerve pain so much more. Since the procedure, I have had to be on much stronger pain killers daily. Thankfully though, I am slowly able to cut down on the narcotics and move back into muscle relaxants and high doses of motrin. I'm hopeful I can stay away from the "bad" drugs.

Today I went back to the surgeon and received my new 24/7 mouthpiece. It is much uglier and bulky than I had anticipated. It fits over my bottom teeth and causes a bit of a lisp. The only time I am supposed to take it out is for eating and preaching he said. Ughh...how I hate it. Even after the possible surgery I will have to wear this thing. I would love to just throw it in the trash but it is a spendy little bugger and he thinks it will help at least some. I find like every other splint i've had I am clenching more but i'll try to keep my mindset optimistic. It may very well help once I get use to it.

The news on the surgery front is both good and bad. While i'm completely ready to head in to the operating room at this point, the waiting game will continue. For insurance purposes as well as to allow us to see how the splint works, we'll have to wait another two months. The doctor said the insurance company requires this last wait before they will ever approve the surgery. The good news to this is it will give us the chance to really give the splint coupled with more physical therapy a chance to do its thing. The bad news is more waiting, more pain, and the surgery date possibly interfering with important work stuff.

I'm finding i'm not the most patient person when it comes to pain. I cannot stand my life being so debilitated with this. The thought of my life being in semi-hold for an even longer period of time is agonizing. I just want this over. I know the wait is a good thing for my body but for my state of mind I feel destroyed. It is amazing how the body effects the mind so much. With each day that passes, i'm feeling more down in the dumps and can't find the motivation for anything. My house is a total disaster, and work is so hard to focus on. All I can focus on is the pain and the hope of getting rid of it.

Please pray i'm able to get my energy, motivation,and zest for life back. I just want to feel normal again.

Thank you for continuing to check in. Each comment left really does make a difference. It is great to know someone out there is reading this. :) I promise to keep up more with this blog. I am finding it very therapeutic.

Hit the Wall

While I would love to claim i'm feeling as content as my furry child Melanchthon pictured here, that would be by far the falsest statement I have made in my 29 years here on earth. Mel is indeed curled up here at my feet, happy and as lazy as ever. All three of my fur-children continue on today as they do everyday; eating, sleeping, getting up only to use the restroom when it is deemed absolutely necessary.

Today I have finally hit my wall. I awoke this morning realizing the second I opened my eyes it was not going to be a good day. While it is Monday (usually good news as it is my day off) the news was not good as the pain was immediate. The nerves around my eyes were immediately shooting pain just at the movement of my eyelids.

I went to physical therapy which helped for a little while. I then went to another doctor appointment where we decided I should start to wean off topamax since it is not helping at all (on for migraine symptoms). The drive is two hours each way to this doctor appointment; part of the joy of living in the rural part of the country.

I have been in tears all day. My pain levels have been a bit nuts and I think my emotions have gotten the better of me. I'm at that place where you hit the wall and everything comes tumbling down. I've done a fairly decent job of keeping up a front for people so they don't seen just how bad things really are. I'm wondering how well i'll do with that now that the floodgates have opened. I can't seem to stop crying anymore. The littlest things are causing me to cry now.

I'm hoping and praying my emotional and physical health can hang on just a bit longer...at least till we get to surgery. I need to stay strong for the sake of keeping my job and my sanity.