Appointments and Appliances

I've had two appointments since the last update, and need to fill you on the latest.  Again, I will TRY to be as brief as possible, but...I'm wordy and so much is happening!  In the last update I had mentioned that I was headed to the ear/nose/throat/sleep specialist and that my 1st doctor had pulled some strings to get me in the same week.  It was interesting appointment. I was a bit disappointed with this doctor initially.  He hadn't read any of my file, looked at my cat scans or sleep study and after asking me some questions about my sleep habits, seemed to wonder why I was there.  He did examine me then and told me that my deviated septum is pretty severe.  It is supposed to be a straight vertical line, but mine is bent at a 75 degree angle, which probably is affecting my breathing.  He asked me if I thought I had difficulty breathing and I said I didn't notice a problem, but it's just the way I am and I am used to it, so how would I really know?  Upon leaving he told me that he would look over the file and reports, talk to  my first doctor and then let me know what he thought.  I was like, "WHAT?, That's it?"  So, I felt like it was a bit of a wasted trip.
Fast forward to the next week (last Thursday).  I was very excited to go to this appointment for a couple of reasons. 1. I would get my mouth appliances that were fitted for me instead of my temporary one that drove me nuts. 2. I would get to meet the creator of this whole treatment process. The assistant fit me to the appliances and then took a new cat scan with the daytime appliance in and another with the nighttime set in to make sure it was set like it was supposed to be.  Then the doctors came in and I was able to meet the creator of it all...it was awesome to hear from him, see the two doctors interact and analyze me and for this doctor to agree with the treatment plan, other than to say that we need to step it up and attack even harder so that we can get rid of my pain.  I also discovered that there are only 28 doctors in the US trained in this...God has His hand in all of this and the timing of it...I can totally feel that.  11 years ago when this all started, my main doctor wasn't out of med school yet...God's timing is perfect!   As they talked to me, the 1st doctor, Dr. K, told me that he wished he could've "warned" me about the ENT/sleep doctor.  He told me he likes to meet with and examine the patient, with no prior knowledge of the situation (scan results, sleep results, etc...) and then he examines the results and my group of 3 doctors sat down and discussed it together to collaborate and work on a plan for me. They did tell me that I will have to have surgery to correct my deviated septum.  When I asked more questions about this (I mean, really, who WANTS to have surgery?), we realized that I had misunderstood, in a way, my original diagnosis.  So...they believe that the root of all of my injuries (jaw, foot and back) goes back to my deviated septum in my nose causing me to not be able to breathe properly.  The inability to breathe properly through my nose has in turn affected my mouth and jaw issues, which has then spread itself and eventually manifested in my neck. WOW!!!  So, this treatment, along with the surgery for my deviated septum could truly fix me!
By the end of the appointment, both Doctors K and Doctor Creator gave me a long list of vitamins that I had to go get at the Vitamin Shoppe.  I was so clueless walking into the store and spent quite awhile trying to find everything...so 45 minutes and over $100 later, I headed home again, along with stopping to get a prescription of anti-inflammatories as well. Seeing the two doctors together was exciting, encouraging and hopeful for me.  Doctor Creator pushed Dr. K to treat me more aggressively...instead of spreading things out, to take a no holds barred approach to get me better. He told me that the reason he created this treatment was because he had suffered with migraines for years and no one or nothing (meds) helped him at all. He had enough and was determined to fix himself...and he did!  Now his goal is to help as many others as possible through his network for doctors that he has trained. He looked me in the eye and told me that I had suffered long enough and that I was going to get better!
The first few night of sleeping with the night appliance have been challenging.  The nightwear is pretty invasive.  Here's a picture of the night guards...there is actually a small appliance on the bottom and a much larger one on top that has a ring hanging down from it so that I can't fully close my mouth.

 I know it is hard to see and it is a bit dark...I don't put it in until RIGHT before bed because I can barely talk in it.  It is very invasive and uncomfortable, but I'm slowly getting used to it.  The next picture is my day appliance that I wear at all times, even while I am eating (which is also a challenge).  It is hard to see in the picture because they are clear. I'm adjusting pretty quickly to the day guard.

I go back at the end of this week...I am hopeful.  I have already had a few LESS-Pain days. I'm taking less Tylenol and the "diet" of gluten free, dairy free and sugar free is going really well!  To God be ALL glory in this...He is amazing and I see him working at every turn.  I can't begin to show it all here (or maybe you see it yourself), but He is so evident at every appointment and the timing of it all. Thank you God, for hope, patience, sustenance and joy!

Impressions

I think I will try to log and track my updates on my treatments here, and just link them to Facebook.  I know many want to follow the progress and it is difficult to keep everyone in the loop.

Impressions...this title is two-fold. My impressions of my doctors treating me right now are nothing short of amazing. Have I mentioned that I love my new doctor?  Each time that I go (3 times now), along with visiting the others on my team of doctors and office staff that I interact with...this group of people are truly amazing and even if I am not healed through this, I feel blessed to have met and worked with these people.

I went for another visit on Monday and had impressions taken of my mouth in order to get my mouthguards ordered. It was easier than I anticipated (thankfully) and not even a single gag from me!  Hooray!  We reviewed my plan, as well as completed strength testing, that I will do each time that I go to monitor my progress throughout treatment.  They then prepared me for my take-home sleep study and gave me the machine to take home.  I took a picture of me in it, but I will refrain from posting it because I also had calamine lotion all over from a case of poison ivy and it is a bit scary!  He told me he was trying to get the sleep study done as quickly as possible so that he could get the results to the 3rd doctor I will be seeing.  When he asked if I had an appointment with him yet, I told him that it was not scheduled until July 22.  He told me that wasn't acceptable and that he would talk to that doctor that evening and try to get me in during the next week and that I should hear from his office in the next couple of days!  He then told me that normally the appliances are in within a few days, but asked if I would be willing to wait a week and a half to come back for them because the doctor that "created and researched" this process that we are following will be in town and he would really like for him to meet me and examine me too.  I happily agreed...what's one more doctor prodding me, and if it is the guy who created what may heal me...I'm more than happy and excited to meet him!  So, I go back to the dentist/dr. on Thursday, the 26 for the appliances and to meet with both doctors.  I was SUPPOSED to also go to my shot doctor for my foot at the end of this appointment, but it went long and I missed it! Thankfully, since I had to return the sleep study machine on Tuesday morning, the shot doctor got me in on Tuesday morning so I would only have to drive that long drive once instead of multiple times.

Kiara and I set off to return the sleep study and head to the doctor on Tuesday morning.  As I returned the sleep study, they handed me a note from the doctor that had a new appointment for the ear/nose/throat and sleep study specialist...instead of July 22, I will now see him THIS Thursday, June 19!!!  I guess my doc has some pull!  He wanted this visit to take place before seeing him next week with this doctor who created this.  Off to the shot doctor we went then.  He believes that I have strained/sprained the tendons and ligaments in the front arch of my foot.  He gave me several shots and then taped my foot.  I am not limited in my activities, as long as I have my foot taped at all times to secure and support that area of the foot. I will tape it every day for 4 weeks and then return to see how it is doing.

This is the summer of doctor appointments apparently, but I am so thankful for being off as I can't imagine how many days I would have eaten up going to all of these appointments.

A side note that I didn't mention...Monday started out a little frazzled.  Last week when I went to the dentist it took me about 45 minutes...Monday, I got stopped in traffic for a broken down RV that they were hooking to a tow truck and moving so I was running behind.  Then when I got to close to the dentist, I got stopped at a railroad tracks for about 13 minutes!!!  It took me an hour and 10-15 minutes this trip.  I had to call to tell them I was still coming but that I had difficulties! Luckily they still took me back but boy was I frazzled by the time I rushed in 15 minutes late!

So, that's where I am at this point.  I feel hopeful. I feel happy. Even being on this crazy gluten free, dairy free, sugar free diet!  My impressions of this treatment so far... are very good!

Glimmer of Hope

The last year or so, I have kept to myself quite a bit with my neck pain.  In the last 4 months, my pain has increased significantly and after taking over a year off of any attempts to seek treatment/healing, I felt God telling me that it was time to begin again. Phil and I sat down and laid out a 'plan' of action...who/what we would try first and go from there...my first 3 choices on the plan of action either fell through, or I couldn't be seen for months, so I went on to my fourth choice. (Don't tell that doctor he was my 4th choice--Ha!)  I went back to my "shot doctor" that I had seen a couple of years ago as he had written me a note out of the blue that he had some ideas and new training that might help me. I met with him and he tole me he was working with a team of doctors that they have had great success treating those with chronic pain that other treatments alone had not helped.  The odd thing...the Dr. was a dentist.  I've tried so many odd things through the past 10 1/2 years that it didn't really phase me and I said, let's go for it.  So...I saw this dentist at the end of May for a consultation.  He told me he saw enough red flags that he wanted to pursue doing some tests with me to determine if he thought he could help me.  At this initial visit I have to say that I was BEYOND impressed with the Doctor and his office staff.  I have NEVER been to an office where I felt so welcomed, taken care of and understood.  He went through my entire 10 1/2 year history in detail with me and really listened to me.
So...we set up a "next" appointment to have some extensive (and expensive) testing done.  Below is the overview/update/plan of action from that appointment.

Some have been waiting patiently for this blog, others did not even know it was coming...I will try to keep it concise but a 2 1/2 hour appointment with a doctor has SO much information to pass on!
The appointment started with a battery of tests...measurements of my mouth, placement of jaws, pictures of all that, pics of my posture from all angles, pressure points of pain on my upper body, a cat scan from the shoulders on up, strength tests, including a "chronic pain test" to test whether I truly had this pain or it was in my head (he didn't tell me ahead of time on that one or I might've flipped out!) and much more. With this chronic pain test, he did something that was very good for me emotionally...if you want to know details of how he did it, I can tell you but I will leave it out as this is a long one.  Anyway, at the end of the test he got down to my eye level and said to me "You have chronic pain." He paused as I looked confused and thought.."Duh, that's why I'm here!"  He then told me what I was thinking and said he just did a test that has been proven 99% of the time accurately to show whether a patient is truly suffering from chronic pain and it isn't mental and he said it was beyond obvious that I AM in chronic pain.  He is really only the 2nd doctor to ever say these words to me.  I cried and he teared up...
Then he analyzed all of the data they had collected with me, step by step, to show me and explain to me what they had found.  The simple explanation....He believes that my neck pain is not the actual injury point (which is why in 10 1/2 years, they can't find anything truly wrong with my neck), but believes my neck pain is a result of my body compensating for other injuries over time.  He believes there are multiple injuries in my body, but wants to focus on what he calls the primary injuries. He believes my injuries are: Jaw injury, foot injury, lower back injury, along with a deviated septum in my nose which is causing an inability to breathe properly (which contributes to the jaw problems).   So, what's the plan?  Our big focus was on the physical treatment, but we also discussed whole health of body, mind and spirit/emotions.
THE PLAN--
1.  I will be fitted Monday for mouth guards that will be worn 24/7...a bottom guard to be worn during the day and a top guard to wear at night. I have a temporary generic one right now that is not going well...I keep gagging on it it because of it's design...so pray that my real ones come in quickly!
2.  I will go back to my "shot doctor" on Monday afternoon for him to work on my foot. This doesn't necessarily mean shots to my foot, as he does other things too.  Oh...and the foot injury...I had no idea my foot was injured but he did a pressure point thing and I about came out of the chair because of the pain...he did the same on the other foot and no pain at all.  Very bizarre!
3.  The deviated septum problem will be analyzed by a ear/nose/throat specialist who also specializes in sleep issues.  Before going to him, I will be taking an at-home sleep study test for him to analyze.  They do not think I have a sleep problem related to the deviated septum, but want to be sure.  I do not wake up rested, but he feels strongly that is because of my pain, not because of a sleep problem.  He wants to be sure that is the case.
4. He has asked me as a whole health approach to go gluten free, sugar free, and dairy free.  This is partly because these foods have inflammatory tendencies and we want to rid my body of that so that it can heal more effectively.  But the idea of simply "eating and being healthy" can only promote feeling better and working with my body to heal.
5. This is a process...I will not feel better overnight once all of this begins.  He reminded me I have suffered for 10 1/2 years and it likely started before that even...my body is going to take time to recover, heal and move forward.
Soothing salve moments-->
1. Acknowledging I have chronic pain and tearing up with me.
2. In our discussion that he thinks that I CAN be helped and feel better after so long, we both got emotional and he had to step out a minute. When he returned he told me that my story has really touched him and he wants so desperately to help me and was so thankful that the tests came out how they did so that we can keep moving forward.
3. He talked to me about how good of a "faker" I have become, as I fooled him in my first visit as well about the level of my pain.  In fact, very few people at my schools this year have any idea that I suffer from pain.  Only the few that I felt necessary to tell.  He talked with me about how I fake it all day long to everyone and that he bets I even fool my family and they don't realize how badly I feel some days, and talked about how he bets that I come home from work and want to curl into a ball and hide from the world and have nothing left to give my family.  At this point the tears were rolling down my cheeks.  He encouraged me to try to be a bit more "real" with my family especially so that they can see the changes (hopefully) that are taking place...he also told me (which I knew) that "faking it" is taking a huge emotional toll on me and that will hinder the healing.
4. He told me that each time I come I will re-hear what is going on with me, what they are currently doing and what they will do next.  He said that he knew my mind was going all over, especially with questions of why this hasn't been discovered before and that I can't process it all at once because of this long journey.  He encouraged me to not think about all of the past treatments and how they didn't work and question why, but to simply move forward and look forward with him and work whole-heartedly on the NOW.
5. There are more, but my mind can't think of them all...have I mentioned that I LOVE this doctor???

So, I am hopeful.  The treatment is very expensive and they are out of network (of course) so most of it is going to be out of pocket...insurance has said it will pay 'up to 50%' but the office manager told me that my insurance usually does not pay well with other patients they have had and to plan on managing it on our own. But Phil and I feel like we have to do this...we have to try it.  To have someone believe in me, believe it is possible to be healed after all this time, to be encouraged and understood in such a way...if nothing else, emotionally it has been amazing.  As I look back and think this was choice number 4 on our action plan, I am so thankful that the first 3 didn't work out, as it could've been months or even years before I reached this doctor.  Pray with me that this is it!!!!  But more importantly, pray with me that I can continue to give the honor and glory to God and receive His strength and hope first and foremost.

Sorry for the incredibly long post...I only scratched the surface believe it or not...send me an email or facebook if you want to know more details or have specific questions.  Thank you for sharing this journey with me...God is amazing and is doing GREAT things...I just KNOW it! :)

Hypocrite? Or Disciple? Or both?

In my mind I have been pondering many things...it starts with my neck pain, but travels to my faith, lack of faith, back to my faith and what it all means.  I have been in a "pain slump" for awhile now. The pain has been worse and I have trudged along with not many people even realizing it. But, I know it and inside it often eats at me.  I get angry and since it is all internal, I shut down a bit emotionally and definitely spiritually.  I read scripture, do my devotions, go to church, pray for others, pray with others, but talk to God about me...nope...ain't happening.
Then my mind goes to the gifts that God has given me.  I believe that God has given me the gift of encouragement to others. When others are in need, I step in and pray with them, pray for them, send and tell them scripture, basically surround them with the love of Christ. It is good for me to use that gift and I do it without a second thought.  When someone is struggling, my first instinct is to find a scripture and an encouraging word for them and to point them to Christ.  Yet, in my own suffering...I choose to close up and deal with the pain alone...even myself, not turning to God.  Yes I continue to read the scriptures and apply it to the "rest of my world" but struggle to find the encouragement for myself that I so quickly give to others.  Why do I so quickly encourage others, yet can't seem to apply that same encouragement for myself.  I believe it whole-heartedly for them...why not for me?
So, lately I have been wondering if I am a hypocrite? I can point others to Christ yet in my journey of pain I choose to close the pain off from Christ's encouragement at times. Why do I do that?  Do I think that because He hasn't healed me after 10+ years that the pain doesn't matter to Him anymore?  Do I just see others as more important than me?  Can I only accept that He loves the rest of me but doesn't love me enough to relieve the pain?  I'm not really sure and that is what I continue to ponder.  I ponder if I truly will live the rest of my days in pain.  Tonight my pain is very high, along with a horrid headache.  I just want to hide away, but I won't. I'll go to bed, drag myself up in the morning and go to school...and try to be Christ's light to others when I can't see it for myself.  Does that make me a hypocrite?  Or does it make me a disciple? I don't know.  I will head off soon to read my Bible, do my devotional, say my prayers (for others) and sleep so that I can be unaware of the pain for awhile...and tomorrow I will start again.  Another day...another chance to point others to Him...I don't want to be a hypocrite and I hope that I am not...I hope that I am simply in a pain slump...and that as it always does, that the slump will eventually go away and I will feel His presence not just in others lives and encouragement, but in my own pain and life as well.  Until the slump ends...thankful for a sweet friend who meets me where I am, and encourages me, prays for me and loves me..through the slump. Bless you friend...you know who you are.

Our Toothless Angel

Wednesday, December 16 was a big day for Kiara! It was her last day of pre-school until after Christmas, her very last pre-school Christmas program AND...the loss of her VERY FIRST TOOTH!  The funny thing was that we didn't realize her tooth was all that loose until then! She said that it really was hurting her at preschool and was loose and was working on it while driving in Grandma's car after school.  It just "fell right out" onto her coat! No pain, no blood! Could she BE any cuter? This face was the one that greeted me at the door when I got home after school and I noticed right away!  Just when I thought she couldn't get any cuter!

 Here she is all ready to go to her last pre-school Christmas program.  She looks like an angel in these pictures in front of the tree.  Don't let that fool you! HA!

 The dress that she has on is a dress that Grandma in Pennsylvania gave her for Christmas. We had Christmas in early November when they came to visit! We were glad she was able to wear it for her program and we couldn't believe she left the bow in her hair the whole time...she is a headband or ponytail kind of gal!

 Here she is after her program on the stage.  She had her own little photo shoot and then proceeded to do some singing and dancing around the stage as well.  That is on video and will be used at a later date I am sure!

 I LOVE this sweet face...both with teeth and without!

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 One last picture with her sweet best buddy, Ella who goes to preschool with her, as well as to church with her.  They are such cute BFF's!

"Lost" or Changed Friendships

I need to blog and I have lots going on in my head and yet nothing is appealing to me to blog about.  I don't feel like uploading pictures, and I don't feel like explaining the journey I have been on the last 4 months, or the last 10 years for that matter.  But something on my brain today ... friendships.  I have a couple friendships that have been life-long friendships, (well, maybe a small pause in the friendships during 7th grade @thebackdoor !)  Those friends have been through my darkest hours (or weeks/months) and my highest of highs.  Those friends are the ones that I have come to rely on and know with all of my heart that they would drop everything for me, no questions asked and I would do the same for them.  I have newer friendships that I see growing into that as well and am thankful for those church gals that God has led me to as well.

Then there are those friendships that have grown near and then grown apart in time for whatever reason. Those friendships too have been so powerful and amazing to me.  I have been feeling melancholy lately over "lost" friendships.  Maybe not lost friendships, but changed friendships.  There are friends that have been such a huge part of my life and pivotal moments in my life that have drifted from me for a variety of reasons...life changes, job changes, new babies entering the picture, busy-ness of our kids, moving away, separating after college...For whatever reason those friendships that have drifted grieve me.  I have been grieving lately the drifting of a few very dear friends.  I saw it coming...knew it was inevitable...but it still hurts.  I'm one of those people that have a few very close friends and don't branch out and really share myself with a lot of people, so when those friendships change it is so hard.  I grieve. I hurt. I ask God why?  Someone recently told me that God brings friends into our lives for a season...a season that is perfectly molded for that friendship. I know it is true, yet so difficult when the seasons change.

I think it has been especially difficult with my job transition this year. Leaving a place that I called home for 12 years has made me realize how much I miss walking down the hallway and just sharing a look with someone and they know just how I need them to pray, or how I am feeling.  I miss being able to be close to someone and have those inside jokes and looks or sayings to get me through the day.  Recently on facebook someone posted that they loved how their co-workers recognized that she needed a hug or a laugh, or a piece of chocolate.  I commented that I really missed that and that I was praying in time I would have it again.  It will come. In time it will come...but for now it is a season of feeling a little bit alone.  Actually at the start of the year I felt COMPLETELY alone...but God is bringing friends into my life.  He is guiding me to other believers that will hep lift me up and not bring me down, encourage me instead of compete with me.  Just today I had an email from a co-worker that lifted me up and was just what I needed to hear.  God is leading and He is leading me to find friendships and people I can trust.  It is hard in the waiting though. I miss those friendships...I long for them...but I know He is taking care of me.

And thank you God that I have those super close friends that are loving me through this crazy life...old or new...I'm thankful for my friends who get me, know me and still love me!

A Decade...really?

Yesterday was another milestone for me. 10 years ago, I had my "episode" where my neck "snapped" and the pain began. 10 years. I had a dream this past week that I woke up on the anniversary and was healed completely with no pain.  I knew it was just a dream, but a part of me longed for it to come true. So, I woke up and as I opened my eyes, discovered that indeed the pain was still there.  It has been such a journey for me and I won't go into details of all that I have tried and endured.  You are welcome to go back through my posts throughout the years and read about it all, but know that I have tried so many treatments, some bizarre, some traditional and have traveled near and far for treatment/help with the neck pain. To no avail.  I have days where I feel hopeless and overwhelmed, but most days I can honestly see and feel God working in the midst of this pain.  I have seen results in the last 10 years. Not with the pain, but my opportunity to witness to others about my faith in a God who strengthens me and empowers me to continue each day and praise Him in the midst of it. He is my strength and my relationship with Him has grown stronger and more dependent upon Him as each day passes.  I have had opportunity to give testimony, encourage others, come along-side others suffering with compassion and urgency to pray with them and stand by them in their trials. And God has led me to different people at just the time that I needed encouragement as well.  With changing schools this year, the new staffs don't know of my struggle with pain and it isn't something that just comes up easily in the lounge. My sweet friend, Chris began praying for a co-worker to be able to confide in....the VERY next day, a woman that I had little interaction with during the day began speaking scripture to me and proclaiming victory over the pain through Christ after hearing someone from church ask me how my pain was. Wow! I wish that I could say that the journey of pain is over.  But it's not and I realized yesterday as I reflected over the last 10 years that if God has seen me through all of it this far...including a pregnancy, change in jobs and some pretty hard trials outside of it...that He will continue to take care of me...even if I am never healed this side of heaven.  I won't lie and say that I don't continue to ask to be healed.  Oh how I long to be "normal" again...but I KNOW with my whole being that He will provide for me each and every day and that at the end of the day, I will be able to praise Him and give Him the glory for providing the energy and strength that I need for each moment.
This morning at church it was our annual "Celebration Service" where we praise and honor Him for all He is doing in our lives.  As I sat there with my neck throbbing and my body feeling exhausted, I felt God saying to me...Yes, you hurt, but look what I have done, continue to do and have yet to do!!!  As I heard God speaking that to me, we went on to sing one of my favorite songs,
10,0000 Reasons by Matt Redman...the whole song is awesome but these words struck me today.

The sun comes up, it's a new day dawning,
It's time to sing your song again.
Whatever may pass and whatever lies before me...
Let me be singing when the evening comes..
Bless the Lord, O My Soul, O My Soul
Worship His Holy name. Sing like never before,
O My Soul, I'll worship Your Holy name!

You see...it's been 10 years with much suffering and pain, but it has been 10 years that I have seen God work like I NEVER had before.  So whether I have a month, 10 months, 10 years or a lifetime left in this pain...I know that at the end of the day, I can worship His name and know that the next day is a new day to honor Him through the pain. I am being refined and refuse to let the pain win, but instead MUST turn the honor and glory to Him for the strength He provides daily.