Mar 24, 2013

Decisions, Findings, and growth

As you can tell from my last post, I have been learning a lot about the gift of agency.  The gift of choice is so difficult and yet beautiful all at the same time.  Growth happens when we do our homework, stand the tests of time, and make decisions.

Lots of thoughts have been running through this house this last week.  As many of you know I have been trying as best I can to stand the tests of time with the trial of my headaches.  They have been occurring for 10 years now.  Last month (a good month) I had 14.  This month I am already up to 15 (I have to calendar them for the neurologist).  - so you have an idea of the amount of headaches I am speaking of.  These headaches have affected the quality of my life, my husbands, our marriage... but, they have also taught me many lessons, in which I am grateful for.

Decisions: 

Over the last 10 years I have worked with 18 different doctors which have all tried to help find what was causing me headaches.  These doctors have been under different disciplines  some correlating in findings and some completely different.  Many of them have given me a "diagnosis" of what is causing my problems and told me a direction to take to help "cure" them.

Disclaimer: when I use the word headache, it refers to an actual headache, but with it there is always Peripheral pain and tightness: jaw, neck, head, back, and face.  I don't remember a time since high school that I have felt any of these relaxed.  Oh, wouldn't that be the day, I don't even think I could imagine how that would feel.

So, with all these doctors, as you could imagine I have been left feeling very confused and upset.  None of them have helped me (meaning taken the headaches away), but many of them have been positive in what they thought as the problem.  Because no one helped me, many times I have blamed myself.  Thinking I was not doing their treatment correctly.  I would only try harder and beat  myself up more.  One specifically told me there was nothing wrong with me and that it was all "in my head" (no pun intended).  He sent me to his psychologist.  Of course, that idea has tolled in my head and many have made me feel like it was my own problem and if I didn't fix my "issues" I would continue on.  So, I have made plans, goals, gone from one "fix" to the next trying to come up with things to "fix" to solve my own issues.  Other than helping me to refine myself as a person, this has not touched my headaches.

As of late (last few years) I have been seeing different doctors playing with the idea of jaw surgery.  Some doctors have told me jaw surgery will make my life worse forever and other have said I will find no relief until I do surgery.  Surgery was left in my own hands and decision.

Due to most things being "ruled out", we have been doing our homework of what jaw surgery would do for me. Out of prayer I have felt good about orthodontics and jaw surgery, but still felt like something was missing.  With braces and jaw surgery their goal was to close my open bite (my first 6 teeth don't touch in front).  The orthodontist (not the orthodontist that I am now working with) and jaw surgeon were not clear on if this would help with my headaches.

Due to my cleft palate, I was told that jaw surgery could re-open my cleft palate and cause me to have speech problems that could not be fixed.

It may seem out of "coincidence", but I don't believe in that kind of talk :)... I was lead to Dr. Jacob.

Findings: 

Dr. Jacob is an orthodontist that specializes with patients with Cleft Palates.  Every 1:4 of his patients have a Cleft Palate.  Most of you know I was born with a Sub Mucus Cleft Palate and attended speech from age 3-11 years old to help develop muscle in my mouth and close off my cleft.

Dr. Jacob has explained to me that there is a correlation to bone growth and Cleft Palates.  When a Cleft Palate is present, many times bone has grown incorrectly.  Which has happened for me.

There are two growth plates (where bone grows) in the jaw.  In my lower jaw my jaw has grown at different lengths.  My right side of my jaw is 1/4 inch shorter than my left side.  This throws my chin, jaw, bones, muscle... many things off.

My upper jaw also didn't grow at the same speed as my lower jaw.  This causes me to have a narrow and to small of an upper jaw.  This causes problems like tongue thrust and jaw problems.

My lower jaw, where is connects at the joint, comes out of place and hyper-extends too far.

With all these bone growth problems, the muscles that attach to my jaw and other muscles around my jaw, head and neck are all working to the point of chronic spasms to try to put the bone in the right place to function properly.  All these muscles, esp. when over worked (any eating, movement of the jaw, working out, clenching, tongue thrusting, daily activities, ect.) the muscles can't handle it- hence why I am always in pain and suffering from headaches.

Dr. Jacob is on a team of doctors that work with Cleft Palates.  I will be meeting with this team of doctors (physicians, jaw surgeons, plastic surgeons, speech therapist, orthodontist, physical therapists, ect.) who will set up a treatment plan for me to correct not just my open bite, but my bone growth deficiencies as well.  If my cleft re-opens there are surgeries and treatments to fix that.

I feel so blessed to finally have found the doctor that has the expertise to help me.  I no longer have to do it alone, I now have an entire team of doctors, not 18 different ones that lead me in different directions, but a team that are all working together giving me answers and working toward permanent solutions.

Prognosis: I will meet with the treatment team, but put in braces, about a year and half later have jaw surgery, be released from the jaw surgeon back to the orthodontist 3-4 months later, and then braces will be taken off couple months following.  I will then see speech therapist and physical therapist.  After their treatment the entire journey should be complete and along with a beautiful smile, some what of a reconstructed jaw, I will also be feeling like I am on top of the world (at least compared to how I feel now).  It is going to take a lot of work and sacrifice, but they say things worth having take sacrifice (or something like that :))!

Growth: 

Due to the length of this trial, my character and perspective on life has changed.  If this trial was only a couple of years I would have not grown like I have.   I thought my headaches would never be figured out.  For years I was angry.  I did not want to accept living with a headache almost constantly and did not want to accept the limits I had to put on myself due to most things that cause me more pain.

But because years went by and nothing changed, I decided to start changing my attitude and beliefs.  I started training myself to be happy, even if I had a headache the rest of my life.  I realized that I am the only one that chooses if I want to be happy.  That is such an incredible gift I have been given.  No one and nothing can decide for me how I want to feel about life.  If I want to, I can ALWAYS be happy.  Of course, life still happens and things are sad and I haven't mastered this, but, I have learned the gift of choosing my attitude.  I got sick of being angry, upset, and bitter about what I was given.  So I learned the skill of choosing happiness and enjoying the moment.  For this, I am grateful.

Commitment.  Is there anything better than knowing someone is committed to you?  If you can think of something else, let me know.  I have learned that my Heavenly Father, my Savior, and Ryan are committed to me.  There were times when I truly questioned why Ryan would stay around.  I was sick of my life and didn't know how to proceed in my thoughts of wanting to continue.  I never got suicidal, thank goodness, but I sure was depressed.  Ryan always thought I was ridiculous in questioning his desire to stay, but to me, he has time and time again shown me is love, patience, and commitment.  He is protective, supportive, sensitive, and incredibly patient with me.   I am so ever grateful he has journeyed this long path of mine and shown me his commitment and love.  Due to the length of this trial, it has shown me his ability and desires of what marriage is all about.  I feel forever grateful and indebted to do the same for him.

There is a time and a season for all things, so let us have patience.  Even though I have still a few years of dealing with headaches, I can see a light at the end of the tunnel.  For me, at times there wasn't  a light and I was starting to accept the possibly I would always have a headache and had to learn to love my life, despite what I was asked to do.  Now that there is a treatment, I am realizing that there is always an end.  10 + years for me was long, but some are asked their entire lives to suffer with things.  Although, I know that there is a resurrection and the atonement is complete, meaning someday we will be completely freed from what keeps us in bondage.  At times that was my only hope.  I knew one day I would be resurrected, and then my body would be freed from the pain.  But now, I know there is a treatment much sooner than the resurrection.  Because of this, it has helped me realize that there is a time and season for all things.  When life is especially difficult one day, I am reminded that it too will pass and things will get better.  If I am patient in all long (or short) suffering, it too shall pass.

Limits and respect.  This has and is probably the most difficult for me.  I am a go getter.  I hate sitting and I love setting goals and seeing progress.  Much of the time I could deal with the pain, but accepting the limit I have to put for myself to respect my body and not create more pain is heart wrenching and makes me very upset. I hate this and this is what makes me the most angry.  My headaches prevent me from doing more things than I'll even go into.  But, slowly, I am learning the more I accept and respect the limits I have, the more peace I find and the less angry I am.  Even though with a headache, I can still do many important and fun things.  They may not be what I necessarily would choose, but I can learn to like new things or accept that I can't do other things.  Limits, they are hard to accept; but, when we respect them, we actually become happier.

Keep fighting and never give up. This has lead me to finally finding the right doctor- but to many, they see all the wrong ones I have found on the way.  To most, it is confusing what is wrong with me.  But guess what, it has been for me too.  I knew I had all this pain (facial, jaw, head, neck, back) and was trying to find the right doctor to help find the root of the problem.  So, each doctor I saw gave me a new diagnosis.  Well, some of them were partially right, the problem is they were only fixing the symptoms, not the cause.  Most people have given up on me, including many doctors.  To most, I seem like I am looking for negative attention or always needing to be talking about the pain I have.  To most they wondered why I wouldn't just give up and accept what I was dealing with.  In that they expected me to start living and functioning as though I should without pain.  Really, how many sick days is one person allowed to have?  But, for me, I knew, or at least hoped, that one day I would find the right doctor that would find the root of all of this cause.  Finally, because I have continued to fight, I have found a doctor that not only knows what is going on, he said that I am so clear cut obvious about what it is going on, he is surprised it has taken this long.  Keep on fighting and never give up!

 Has anyone gotten through this entire thing?  If so, you are a true friend that really cares.  Thank you for having interest and being concerned.  And those that have not, I understand, it is pretty wordy and I don't want to correct it- it isn't an English paper!  haha!

5 comments:

Redefined Possibilities said...

Wow, Michelle. I knew about the tongue thrusting issue, but didn't know about all the other issues you have been dealing with. My heart is sad for all of this. But, I appreciate the attitude you have decided to hold on to. I don't know if my daughter, Adrienne's, jaw and headache issues can compare to yours, but I do know the feelings she has had of utter despair in not knowing where to turn to for help. Until, by a miracle she/we were guided to someone who had answers, not cop out cliches' that "It is all in your head!" You take it one day at a time. Some days are good, some are bad - that is just the way it will be for yet another season for you. You are fortunate to have a husband who loves you regardless, two beautiful little boys, who in the end will remember your love first. And you have parents that have been with you during your journey and will continue to be your cheerleaders and support. You are blessed. Somehow, some way, it will all be OK in the end. Until then it is about enduring and you are made of endurance material. Love you.

Srija Mitra said...
This comment has been removed by a blog administrator.
Sam said...

Wow, that was so interesting. I can't even imagine having to deal with that. So glad you are on track to a solution and you are an inspiration for improving yourself and becoming more positive.

Rachel said...

Congrats on finally working toward a new solution!

Hillary said...

I am so happy for you! Heavenly Father is always mindful of each of us. Thank you for sharing. :)