New plan and another doctor

I should've written this post last month, but I didn't. So, here I sit, trying to remember it all...I went back to my main doc, Dr. K on April 29.  At the previous visit he had put me on a nasal spray to do 5-6 times per day (for more info why, refer to previous post).  Unfortunately this spray did not decrease my pain levels. He had told me that when I came in April if there had not been improvement that he wasn't sure what to do, but that we would sit down as the whole doctor team and myself and do some brainstorming to see if we were missing something.  I had prepared all day for the end of the road speech and had several friends praying for God's perfect peace in my heart. Instead I got something different. He did his full exam and strength testing and told me that everything looks great and that were no areas that needed work.  My jaw is maintaining where it should be and all is good...except that I'm still having lots of pain.  So I think..."here it comes" and take a deep breath.  Instead he told me that he has some new ideas and a brand new plan.  He has been talking to a variety of colleagues about me and without boring you with the details of it all, Dr. K wants to send me to a specialist in Chicago. She is a specialist in CranialSacral Therapy.  This was something I had not heard of before, but he has seen great results with a few other patients who have gone there. I'm not sure I will explain it well here, but inside our bodies we have a lining called fascia (similar to the skin-type lining on ribs that you have to remove before cooking)...During injury it can stretched and mis-aligned and the thought is that it is not moving back to where it needs to go.  It won't retract and remain stable there...so we have  to train it to do that. This is done by slight massage to your head and spinal areas in a very particular fashion.  Yes, it sounds a bit "out there" to me too...but its been 11 1/2 years and I've done crazier things than this!  After going through all of this, he asked me what I was thinking because I was sitting there dazed.  I had just prepared myself for the end of the road speech and he blew me away with a plan instead.  I started crying and told him just that and that I was overwhelmed and wished I had brought someone with me.  He immediately got me set up for a phone conference call with Phil and I the following week so he could explain it all again and we could take notes and ask questions.   He also wants me to go back on zija (the product I took a few years ago and had 7 months with little pain before it stopped working).

Jump ahead....Phil and I "met" with him over the phone to go over it all again and we gave him the go ahead to set up the appointments for me.  A couple of days later, he emailed me and said he had talked with my other doctors and they decided to try something else first.  (That means there is a Plan A and a Plan B!!!)  Instead, they are sending me to Chicago to meet with a specialist in osteopathic and acupuncture medicine (along with a few other things too).  I have done the osteopathic adjustments and acupuncture before with no relief, but I trust this team of doctors and if they want me to do it, I will.  I let him know my concerns, along with concerns of having to go there on a regular basis, which is not real feasible to travel to Chicago all of the time.  I agreed to go to the consultation and go from there. My insurance is not accepted there, so once again the bills will mount.  But, I'm trusting God to provide.  He hasn't failed in that area yet.  So...I head to Chicago on my very first day off of school, Thursday, June 4.  I've never driven to or in Chicago before...that will be a new adventure all in itself! HA!

So...I drink my zija. I wait for my appointment. And I trust that God has a plan even in this, yet another fork in the road. Yet another summer begins with treating my neck...but at least it will be summer and I'll have the time.  At least that's what I am trying to think.  

May 3...23 years later



Anyone who knows me at least relatively well, knows that in high school, my best friend, Kiara Joy was killed in a car accident. I've written about it many times on here and in other places, so tonight isn't a re-telling of that night, what happened, etc...I just need to reflect a little on my journey this year in this last week before the anniversary.  This year the dates all aligned with the same days and so for some reason this year the memories seemed a bit more vivid...even the prom dates lined up the same and as I saw pics last weekend of those going to prom, memories flooded in of that night and the last picture we had taken together.  She went with a group of gals and I went with a boy...but we got pics together as it was her senior prom and we wanted something to remember it by.  Then as the week went on, I would remember little things about those days as well...a silly note that she wrote me, a dumb fight we got into...a tennis match at Bremen on Thursday night that she rode with my mom to watch me at.  I even remember the shirt she was wearing and the sound of her voice cheering me on...Friday I had flashbacks of our last phone conversation that night, the words that I will never forget...As I woke up yesterday I remembered the order of my day 23 years ago...SAT test first thing in the morning, tennis practice where I broke a string, the drive in movie that I went to that night (and hated the dumb movie and was freezing the whole time).  As I went to bed last night, I remembered going to bed that night, having no idea my life would never be the same.  Through a series of events (which is a whole different post), I was not sleeping last night and I watched the clock move past the time of the accident, past the time of her death and reach the time of the phone call that we got from her parents in the middle of the night from the hospital.  My stomach hurt, my heart broke all over again and I just stared at her picture that I had just posted on facebook.  It felt so fresh and real all over again.  I didn't sleep much last night and when I woke was flooded again with memories of that day 23 years ago...a visit from a friend and her mom to be sure we knew, a stop at another friends house to tell her and her mom, a church service that I couldn't sit through and ended up leaving, a time all together with the choir grieving in the PHS choir room all afternoon...and the memories continue to flow of those first few days...I don't know why the aligning of the days has made it harder this year. I really don't.  All I know is that I have cried and laughed, grieved and remembered...and it's okay.  It's what I needed and it's okay.  I went to the cemetery and after crying at any little thing all weekend long, I got there and there were no tears...and then I started laughing and telling her that I promise I did miss her even if the tears weren't there at the moment and I could picture her smiling with a twinkle in her eye and laughing at me...
I mentioned on facebook that I worry people tire of me talking about her each year...but it really doesn't matter.  My life was forever changed by Kiara Joy...her life, her friendship and her death.  I choose to honor her, love her, celebrate her and remember her...every day, but especially this day.
I will always love you Kiki!

 

Holding it in and putting on a happy face

It's been awhile since I've posted.  There really isn't anything new to report.  I don't go back to the main doc until April 29 and the nasal spray that he had put me on is not helping the pain.  I've had a pretty rough couple of weeks as far as pain goes.  I'm finding it NECESSARY to take more Tylenol to get through the days and that by the end of the day, I've exhausted.  Exhausted from pushing myself to still "get it all done", from having super energy with my students, from taking care of others, from putting on a smile and making everyone think that all is well with me.  Most people that I work with still do not know of my 11 year journey...just a select couple that I have trusted to let my walls down with.  So I go through each day and smile and hug the kiddos and act normal...and then I come home to my own family that takes the brunt of it all.  They see the real me.  The me that has no energy or patience left for them.  The me that doesn't have a lot left to give.  The me that is irritable because I faked everyone out all day and emotionally can't fake it for One. More. Second. 
I had a thought tonight. Not really a revelation, but a thought.  I block everyone out and don't show them the me that is in pain and crying out for healing...yet it's so lonely...because then everyone thinks I'm okay, when really on the inside I'm screaming for someone to notice me, to pray with me, to encourage me in any way...it doesn't even have to be specifically about my neck.  I don't know if that makes sense.  An example...my sweet cousin, K, sent me the most beautiful texts last week asking how I was and then sharing with me that I inspired her and the admired my strength through all of this.  I sat with tears streaming down my face...I needed those words. I didn't even know I needed them until they were there.  The night that we were texting back and forth I was having a very hard night.  I was in pretty major pain and was alone in my bedroom crying with a box of kleenex and my Bible.  God knew I needed that. How thankful I was for it.  My pain didn't decrease but I felt stronger and ready to fight another day after knowing someone was pulling for me.   I need to be more intentional with people on things like this too...so often I take people for their face value that everything is wonderful...how much better would it be if I asked them how I could pray for them, instead of just saying "how are you?"
I don't know.  Just rambling here.  I know it's my choice to not let people see my pain. I know that my doctor has advised AGAINST doing this as it isn't healthy.  But my fear is that when people see where I really am, will they run the other way not wanting to hear/know the truth. Will the pity me and walk on tiptoes around me?  Will they think I'm too high maintenance and find someone else to be close with? Will they roll their eyes behind my back and think I need to just suck it up? Will they avoid me because in truth they don't really want to hear that it sucks?  So I hold it in. I cry in my room with my Bible. I put on a happy face.  I suck it up. And I start a new day. That's where I am.

Hope in the Long-Stretches

                                       

Back to the doctor I went this week.  Before I went, I had some friends praying for me...I was afraid of what I was going to hear, and although in my heart I know that He will sustain me, my brain wasn't resting in that. I have stayed relatively numb since my last visit to the shot doc.  I've had some down days but mostly just been floating along unfeeling.  So, Wednesday I rushed out of school to get to my appointment with the main doc, Dr. K (the dentist).  The assistant took me through some of my initial testings and measurements and was super chatty, which didn't allow me to think too much.  Her opinion was that things looked great as far as my jaw was concerned.  I have maintained where I am supposed to be and have not regressed at all since getting rid of the day mouth appliance.  That was good news!

So, after a bit of a wait, Dr. K came in to meet with me.  He was very pleased with my jaw progress, but concerned with my increase of pain in my neck area and that I have seemingly gone backwards in my improvement levels there.  After he ran me through all of the physical testing, he sat me down to talk to me a bit.  He hasn't given up hope yet, which is a good thing as I wasn't excited about hearing a "This is the end of the road for you" speech.  Basically we talked about how physically they have repaired as much as they can as far as the jaw, nose, cranial-facial areas for me.  Typically this takes care of the problem. Since it hasn't, his thoughts are that my deviated septum had been around long enough to cause my jaw to form incorrectly.  We can't fix that (short of breaking my jaws and starting all over with the healing formation).  Recently he has talked to some other doctors about what to do in cases like mine where the nasal surgery and jaw work hasn't fixed the problem. They have found some success with nasal spray.  (Bare with me here).  He says that even though the nose is "fixed", the flow of air still isn't able to flow normally because of the way my jaw has formed.  The idea with the spray is that when used often (5-6 times a day), it opens up the nasal cavities and helps me to breathe properly.  In turn, my posture changes because of the different air flow, which in turn helps pain levels throughout my body.  I'm not entirely sure I am on board with this treatment.  Although it makes sense on some levels to me with all that I have learned about the anatomy of my body and how things are connected...I think it's a long-stretch.  However,  that's where I'm at.  I'll do the nasal spray for 3 months, 5-6 times a day, stick to the gluten free, sugar free, dairy free diet, drink 64-72 ounces of water a day and pray for healing in the long-stretch.
So...I, being a planner, ask him what's next if this doesn't help.  He smiled and teasingly called me a pessimist and then admitted he knew me well after a year and knows that I am a planner and need to know what's next in the scheme to prepare myself emotionally. If this doesn't work or help, the next step is to get the shot doc, Dr. K and myself an appointment to meet all together so that we can talk, brainstorm and see if we are leaving anything un-turned.  Which essentially, is the end of the road for this portion of my journey and puts me back at ground zero, as I like to call it.  A place without a medical plan or idea of what to do for me.  Ground zero is a scary place for me and a place I dread...but I've been there many times.  Right now I'm not going to focus on that...gonna try hard to focus on the hope in my long-stretch and try not to put the cart in front of the horse so to speak.
As I drove home, I was thankful to not be a crying, sobbing mess.  There is a glimmer of hope...hope in the long-stretches.  After 11 1/2 years, that's what is left. Long-stretches.  The awesome thing that I know is that God is hope...and He is MY hope...the the long-stretches and in the ground zero. When my body fails and my healing fails...God never does.  So I'm focusing on the hope in the long-stretches and the God who is all powerful through all circumstances. 

not a lot to update

Many have asked for an update on my neck...so I thought I'd take a minute to "update"...although there isn't a lot to say. I have continued to have the pain.  Since my last post, I have had more rough days than good days.  I cherish those good days and probably go overboard on those days.  Numbness comes and goes with my emotions. I've had some low moments where I have been overwhelmed and in tears.  I've had moments that I feel not much at all and I've had moments where I have hope and peace. I haven't been back to any of the doctors.  On the 28th of this month I will head back to the main doc, Dr. K. He may have some added insight as far as my neck goes, or not.  I don't know.  Right now I am taking it one day at a time, trying to have little to no expectations.  So, not really an update at all...but it's where I'm at.

Simply Numb

I'm not sure what to say or how to begin this post.  I usually just start typing and the words flow.  Not so much this time.  I went back to the shot doctor tonight, Dr. C.  And that's where my brain just sort of stops.  To give me an idea of where I could start, I re-read my blog from the last appointment...below is an excerpt from it...

"Dr. C told me if these shots do not help me, he is stumped again.  Translation...he won't know what to do with me again and this journey basically has halted again.  I'm nervous.  I'm scared that it won't work.  I'm scared of having to start over.  I'm scared of just giving up again.  I'm scared of this pain that has been here for 11 years tomorrow (Nov 9).  I'm scared of hoping to be disappointed again. "

Back to today...the pain levels have not lowered since my last round of shots.  He felt that this would do the trick and it has not.  I'm still in pain. EVERY day. The shots have NOT worked.  He is stumped with me and the journey has halted. He says that there isn't anything else that he knows to do. He told me he was sorry, and I just sat there nodding. He even asked me if I was understanding what he was saying because I was calm and not crying.  I understand. But I'm numb. I'm simply numb.  He did tell me that when I go back to Dr. K at the end of January we can see if he finds something additional to look at, but that looks fairly unlikely at this point.   All of this hope, all of this last 8 months are swirling around me and I feel numb. How can this be?  THIS was supposed to be the answer.  My jaw is fixed, my foot and lower back are fixed.  Why can't my neck be fixed? 11 years...So, I sit here tonight wondering what is next? Is this journey over?  Do I just accept this life of pain?  If so, HOW do I accept it? Where do I go from here...physically, mentally, emotionally, spiritually...???  And when the numbness wears off...how will I react to this?  And then I read another portion of my last post when I had just gotten the last set of shots...

"And even though I'm scared of all of those things, I KNOW without a doubt that God will sustain me.  He has for 11 years, so why on earth would He leave me now???  He won't.  He holds me, sustains me and gives me daily strength...so I'm trying not to focus on the scary stuff...but just to breathe in and out and trust that God's plan is bigger than any that I have for myself."

So, I don't know what's next.  I don't even know how I will feel in the morning.  I sit here tonight with my gluten free, sugar free, dairy free "Frosty" and put Hershey's syrup on it to cheat a little and comfort myself...wondering when my world will stop spinning and when I will lose this numbness...I do know that God will sustain me and give me daily strength. He has proven Himself over and over and so I know He won't leave me now. But right now, a single tear rolls down my cheek, and I wait on Him to help me breathe in and out and show me His plan in this...a plan to use all of this for His glory...

Long Overdue #2

Part #2 is not nearly as "fun" to report for me.  After the news of the previous week of weaning off of the day appliance and how improved things were for me structurally...I was off to Dr. C, "the shot doc".  We have such a love/hate relationship...I love his care for me as a patient...I hate his actual treatments :)  So, after a delay because of strep throat, I headed off to Dr. C.  This time I had my mom and Kiara take me there, as it was pretty rough the last time.  I knew I was getting shots in my foot, per Dr. K, but I wasn't sure about the shots for my back/butt area.  After evaluating/talking to me, he started in with the shots on my foot.  He felt that this relapse injury wasn't a big deal and probably had more to do with me standing and teaching versus being on summer break.  He said one round of shots should take care of it.  He then moved on to test my lower back/butt area. Unfortunately it was still very flared up and he decided to be extremely aggressive (his words) in attacking these spots.  For those who don't remember...these shots are called "prolotherapy" and the simplest explanation is that it shoots inflammation into specific areas, with the idea that the white blood cells will attack and heal in those areas.  So, basically I am purposely inflaming already injured areas.  Now, I've gotten quite a few shots from this doctor in a variety of places on my body (foot, neck, upper back, head and now lower back and butt).  I've cringed, held my breath, and gripped the arm rests before, but this was a new experience. I did all of those things, along with a slight wimper, spasms and actual tears.  He talked to me the whole time and kept asking if I was doing okay and if he needed to stop. I was slightly embarrassed that I actually cried during this until he told me that he was extremely aggressive and he knew that I was probably going to do that.  He was VERY glad that I had my mom drive me and it only took about 10 minutes after leaving the office before I was BEYOND glad that she had driven me.   By the time we got home, I couldn't stand up straight and it hurt to move my body at all. I was in tears and a mess emotionally.  I grabbed a bite to eat and went to prop myself up in bed to do my Bible study homework and devotions.  To put it mildly I was a mess.  I was in tears and honestly couldn't pray.  I just said, "Jesus, Help".
As I opened my Bible Study, I found that we were discussing suffering in our lives being used for good and the scripture jumped off the page at me, as tears rolled down my face.  I still was crying out, "Jesus, HELP"!  I had to answer the question of how God worked in the life of Joseph in the midst of his suffering.  I was FORCED to look and acknowledge what was good in Joseph's (and obviously mine) in the midst of his suffering and enslavement of his life (the story of Joseph's life is in Genesis).  I half-smiled through the tears and pain and whispered,  "Thank you for the reminder, Lord".  As I was reading, a friend text me to tell me she was praying for me, as she knew that I had shots and she was standing in the gap for me..."Thank you Lord".  As I picked up my devotional to dive into that, my phone went off indicating I had a new message on Facebook.  As I clicked on it to read it, my mouth dropped open, a sob escaped and again, "Thank you Jesus!".  A brother in Christ from church, sent a message asking if everything was okay because he had a strong urge all day to lift me in prayer.  He had NO idea that I was getting shots. As I wrote him back I told him that God was simply amazing and explained it all.  Funny thing is that I felt a peace wash over me...I still felt awful physically...the level of pain was extremely intense and I didn't know how I was going to sleep, shower, go to school, etc...but I KNEW without a doubt that my God was present and cared... and he was telling me JUST that.  Then, as if I needed further confirmation...I opened up my devotional for the day and again, tears poured down my face.  A small excerpt taken from Jesus Calling (Sarah Young) devotional, " Be willing to follow wherever I lead...Though you don't know what lies ahead, I know; and that is enough!...Some of My richest blessings are just around the bend...you must walk by faith--not by sight...Let my light continue to shine within you as you walk among people again."
THANK YOU JESUS!  Wow!  I was in awe of His greatness, His mercy, His love for me, and the knowledge that He wasn't leaving me, even when all I could do was cry His name.  What a powerful time it was that night.  I was able to sleep through the night very soundly and although very stiff and sore the next day, was able to go to school and teach (with a no-hug-Mrs-Witmer-day).
God is good...All the time.  And when I felt like the world was shaking...you guessed it...He held me still.  Thank you Jesus! 
P.S. I have since been back to the main doc, Dr. K...so I have a new post needing to be written...back to the shot doc this week too...prayers appreciated!