Moving Mountains

Post after post I feel like I have shared our journey.  Unfortunately it has never really been the journey I have wanted to share.  I keep wanting to post how our lives are getting back to normal, and life is pain free.  I dream of a day when this blog is just a place to post happy pics of the kids, and give quick updates on family fun times.  And for many, they may have walked away from this blog because the posts are always revealing the next big medical, financial, or life crisis within our fam.  It breaks my heart that time after time I find myself writing similar words on this blog....chiari, eds, money, doctors.  But one word I keep writing I love...Faith!  And quite frankly it is the only word that lets me keep writing this blog.

Today has been a day of complete reflection.  A friend took the kiddos to her house for the day.  I have rested and contemplated the last few years and the months to come.  Most days I shove this info to the back of my mind, I just have no desire to deal with it.  I try with all my might to push through the pain and live normal.  I think if I ignore it it is bound to get better, go away.  All my life I have fought this stupid beast.  I have missed out on things because I was sick or hurt.  I did not understand why other friends could go away places and I always went only to get sick.  By the time I hit college I had lost all hope of being the normal kid who goes away to college.  So I told myself living at home through college would save me money.  Through the years I have learned how to deal.  I have learned triggers such as food, heat, exercise, and smells.  This has helped.  I know we all have mountains to climb and mine is really no different than thousands of other people.  I just have to figure my way over it.  Or maybe just my way to live with it.

Tim and I really feel I need a second opinion.  So I am seeing Dr Henderson in Maryland on August 27.  Thanks to an amazing person, I was able to pay for the visit and a plane ticket.  Dr Henderson really is the best in what he does.  He is a hero to so many.  This does not mean I am not having surgery with Durrani, just that I want to make sure I am taking the right steps.  I have moved my surgery to September 24.  I can honestly say I am very scared for this.  Not the surgery part, the healing part.  I am not good at handing my life over to others.  I need to feel like everything is done my way.  I have certain ways to organize toys, linen closet, and just life.  I have to let these things go and embrace rest.  I am slowly being forced to do this, as my neck and head make it impossible to do most things now.  But my heart keeps screaming, "I can do that!!!  I can keep up!!! Just watch me!!!"  Thankfully I have had a few friends that have told me to let them do it.  They are forceful yet loving and it has allowed me to let them in.  And my hubby is very good at telling me to slow down.

I know many of you pray for our fam, and I thank you so very much!  I can't tell you how blessed we are to know we have people lifting us up.  I would never be surprised of those just walking away because it is too dramatic, too much.  Thank you for the prayers....the financial help that keeps us floating just above water....and the endless kind words of encouragement.  I do have a few specific prayer requests for those who will pray: Please pray for Brooke.  Brooke is having vision episodes.  Her eyes are fine, but she is having times when her vision is blurry or just not there.  She is sure her eyes are broke.  :(  I keep trying to explain it is her brain.  This is scary for a little one.  Please pray she grows to understand what is happening.  Also that I can get Brooke in to some specialists for her urinary and bowel problems.  They are in cincy but the idea of more trips there scare me!  That is really not the most pleasant drive.  Please pray for Aidan.  He is such a trooper and a huge help to me.  But I know he is struggling with headaches.  Please help the PT to happen soon (he is on a waiting list), and we find some way to relieve the headaches.  Please pray for Chandler.  I am so worried after surgery.  He is a cuddle bug and will not understand why mama can't hold him, or why he can't jump all over my bed.  Please pray for Tim.  He is my rock.  He has been my biggest supporter, and my greatest comfort.  I feel most at peace in his arms.  And yet I know this is all tough on him and a huge responsibility.  He works so very many hours and is exhausted.  I just pray for his health and sanity.  I hate asking for prayers for myself, but I am desperate!  I feel like I am walking around with a 50 lb bowling ball supported by a small stick that is going to snap at any moment.  Every joint has been popping in and out of socket- my hip, knee, and wrists being the worsts.  My hearing is really bad, and I am scared it is going to leave and not come back.  I am trying to eat super healthy to try and clear up my stomach issues and see if it helps with any other things too.  Not an easy task.  Thank you for being faithful to our family, for carrying us when we need it.  I pray everyday for the blessings that surround our fam and those who bring those blessings about!!  I lean into my Faith because with it we can move these mountains.

Perspective

I have been trying to write this post since Friday night.  I just have been not in the mood to put my feelings down.  I think mainly because my mind is all over the place.  I am having trouble finding perspective in this whole situation.  In fact I am sorted tired of hearing myself talk about it.  I do not want to remind myself let alone others where my family is on this journey.  I really want to quit focusing on us, and move on.  Sometimes I wake up and lay in bed and think "today I am going to push forward and not even think about any of this EDS, chiari, and surgery stuff."  Then I put my foot on the floor and I am quickly reminded there is no forgetting.  It is not going away.  It is here to stay.
On Thursday very early I left for Cincy with my mom, sister, Aidan, and Chandler.  I had to be there by 10:30 for a flexion/extension mri and a 3D ct scan.  My mom dropped me off for the scans.  The CT was first.  It made me pretty dizzy as you have to turn your head to left and right and hold them there.  The MRI really bothered me, as you have to hold your head way back for several minutes.  My mom and I then had an appointment with Dr Durrani.  My mom was seeing him too.  She wanted to find out if her symptoms were due to EDS also.  One thing I will say about Durrani is you wait and wait in his office.  I started getting really sick.  It was so bad I sat down on the floor and laid my head on the chair.  This is pretty bad, cause doctor office floors are icky! When they finally called us back my mom had to get me a cool rag and some water.  I thought I might pass out, the office was so hot.  Thankfully I made it.
Dr Durrani came in and his first comment was, "Oh you do not look good my friend!"  He did go over my scans first but I will come back to that.  He did look at my mom's scans and found some interesting things.  He believes that she has EDS.  He was quite impressed with how bendy she was for her age.  But he also saw many signs on her scans.  He saw that she had some discs that were causing her numbness in her hands.  He also saw that she had an enlarged pannus muscle which has developed over time to keep her head from being wobbly like mine.  The crazy part is she had terrible headaches when we were little.  This is how her body compensated.  Thankfully her body found a way to help itself and it did not lead to her being paralyzed or death.  I am so thankful that was God's plan for her life!  He did tell her she needed surgery on her neck, but different from mine.  He also wants more scans of her lower back and he is monitoring a mass that is right next to her spine.  He feels the mass is benign but wants to do further testing.  I know my mom's head was spinning.  This answers so many questions and yet makes so many more.  So if you could please pray for my mom!
Here is what I found out....I need a C1-C2 fusion.  The 3D CT showed that my vertebra are uncovered by 90% when I turn my head.  This is not a good thing.  It is what is causing headaches, dizziness, black outs, and severe neck pain.  I wish I had the pic to show you!  It was pretty amazing.  But he kept the scans.  I will try to post a similar pic on here but it will not be mine. He wants me to wear my collar at all times (easier said then done). My surgery is scheduled for September 19.  I will be there about a week and then on pretty strict rest for at least 4 to 6 weeks.

                                         This is not mine, but similar.  C1-C2 Instability

I have to be honest my brain is on overload.  Tim is trying to get off, and I am going to try to schedule everything so I do not feel bogged down at the last minute.  Part of me is just telling myself, "It is not a big deal."  The other part is shouting, "you only get one chance to make this work!  If you do not rest you can mess it up more!"  And most of you know how I am with rest! Tim is also encouraging me to get one more opinion.  He just wants to make sure I am going down the right road, especially with our family history and Brooke's Chiari.  The problem is there are only 2 other docs I would even ask for an opinion from and they are both out of state.
Thank you all for your continued prayers and your love for our fam!  I will continue to update you all!  Many blessings!

Some Clarity

I need to write this post to convince myself.  To tell myself "Stop!!!!"  "Slow Down!!!"  "Rest!!!".  I never ever give myself permission to relax.  I feel this constant drive inside my mind to keep going.  Since the post I wrote a few weeks ago, you could not possibly imagine what I have "accomplished".  And yet I lay here in agonizing pain.  I am so angry at myself and frustrated with my lack of commitment to myself.  I am also disgusted of hearing my own cries of sorrow.  Most of you may be reading this and wondering where I am going with this and why I am rambling.  let me explain...

I was diagnosed with something I have had since the beginning of my life.  I have always struggled with various health issues and concerns, but always told it was nothing.  I was fine.  I began to believe this, so even when I hurt I pushed through.  When my hips would pop out of socket and cause searing pain, I would tell myself, "You are fine, just smile."  So I did.  When my head felt like it might actually fall off my shoulders, I would sometimes rest, but continue on.  Now I am not saying this to hear a "good for you."  I am saying this because for 35 years I have been telling myself that I am fine.  Now I know I am not fine, and I really do not know what to do with that.  Even though I have known for a while that this body was getting the best of me, I kept pushing through it.  I had to...I was fine.  

This reality has let me exchange my 35 year old body for an 85 year old body (with a great complexion)!  I can now give myself permission to slow down.  But when I slow down my brain interferes with this process.  I am hearing all the things I should have ready and done.  I mean every person who can hardly move should organize all their holiday decorations.  And I should make gardening and organizing the kids memory boxes top priority.  It is like a mini war going on in my head!  "Yes make all your families food from scratch, and make sure you rest while doing it!"  I feel like I will be judged if a frozen pizza box is in my trash, or my kids watch movies while falling asleep.  The idea of the perfect little family has gone out the window.  I can no longer smile through the pain, even though I am desperately trying to.  

One thing I am quickly learning is when trying to correct one thing another issue pops up.  The braces help, but wearing them makes my leg muscles cramp up.  They are so used to overcompensating for my bad back, they now do not know what to do.  The heart meds are helping my palpitations and feelings of faintness (which means I probably have POTS), but the meds make me very restless at night and I can't sleep.  Last Friday I was so exhausted and scared I headed to a friend's house for a good cry.  We talked, and shared, and believe me I tried to cry.  No tears, not one.  Why cry?  I just want to let go for even a moment.  To let this all sink in.  And for some reason I just keep saying, "I'm fine, we are managing."  I AM NOT FINE!!!  See I can write it! :)  

You may be saying by now, "Good Grief Melinda, there are people suffering all over the world with many worse issues!  Get over yourself!"  And I would totally agree.  I have horrible guilt for feeling bad.  I want to just say no worries, I can manage.  I am angry at myself for feeling like a burden, or a nuisance.  I do not want to be asking "why me?"  And to be honest I do not.  But I do ask..."How can I?"  How can I give one more bath?  How can I cook one more meal?  How can I drive one more place?  When every step takes effort, and every movement causes pain, I have to face the fact that my life needs to change.  Please know my heart...I do not write this for sympathy or reprimand!  I write to state my feelings for myself, and others.  I write to maybe show others that we alone can't do it!  We need a community, we need a great God!  I am so thankful for both, and I need to stop trying to be my own community, and fall into the arms of my God.  

A Simple Nudge

I will start this post by saying this is about my faith walk.  It has no medical info, and I understand if you want to close the blog now.  For those of you who are staying, you should know I am not one to talk about religion.  My faith, yes, but religion, no.  I truly believe that as Christians we need to embrace other Christians no matter what church they attend.  We all fundamentally believe the same, and our divisions cause confusion.  Before I go on I will say I have thought a good deal about this post.  I have felt very nervous about writing it.  I have always had this need to be understood, and I fear this post may be hard to write in an understanding way.  Basically I feel the need to explain myself for decisions I have made and those I am going to make.  Why?  Well again I just want people to understand where I am coming from.  I guess it is my silly feeling of being judged.

I grew up in a catholic family.  We went to church every Sunday.  My parents where very involved in church as well as prayer meetings outside of church.  As funny as this is going to sound, my parents were charismatic Catholics.  Bet you did not know that was even possible, but it is.  We went to prayer meetings where the music was so alive, and you felt God all around you.  People would sing and dance.  I loved it.  I was young, and did not understand everything.  As I grew older we did not go as much.  But my parents still were around many families that had the same values as them.  For various reasons it was not possible for me to be married in the Catholic church.  I was very sad, but still went to mass.  When Aidan was born there were some things that happened that made me realize I needed to find a church home for both of us.  I did not leave the catholic faith out of anger, just felt at the time God was leading me in another direction.

This is when I found my wonderful First Christian family!!!  I can't say enough about the love of the people at that church!  They have supported our family through job loss, surgeries, and heart break.  The people of FCC have prayed for our fam with unending love.  I am constantly moved by these wonderful people who continue to love on our family!  This was also the church home where I worked for 3 years with the preschool age children.  I loved every Sunday sharing Jesus love with them.  What a Joy to hear them praise Him!  How humbling to hear their sweet prayers each Sunday.  They changed and grew me in so many ways.  I miss it terribly, but I also know my body could not handle this job anymore.  God knew this, He prepared my heart for this.

When our fam moved to Athens I felt very alone.  I missed my friends, my family, my home.  We started going to Brookfield Church.  All I can say is WOW!  It blew me away.  I made instant friends, and the service was alive and wonderful.  I felt like a kid again in those prayer meetings.  The music, sermons, and prayers moved me to the core.  When I say that I am so very grateful to Brookfield it is not an understatement.  I miss it all the time.  I have desperately wanted to go and visit, but have not been up to it.  I pray every Sunday for their growth, as they are a new church that will change Athens for the better!  I just know it!

Coming home was a huge blessing.  We felt so good to be in our house again surrounded by those we loved.   I started searching for a small church so that Tim might feel more comfortable.  The day we moved back into our home it was a huge snow storm.  Five men from Faith Bible Church showed up at our door to help.  We had never met any of them in our life!  A friend had told them we needed help and there they were!  It was amazing to see His love poured out to us in such a wonderful way.  I decided to go check out the church these men came from.  We really loved it.  It was small, and yet family oriented.  The teaching was wonderful and very bible based.  We thought we might be home.

Over the past few months I have become much worse.  To see me you might say, "She doesn't look sick?"  But I can assure you I am.  When I wake up in the morning and step out of bed my feet feel broken.  They are literally curled up into a ball and after slowly walking on them they begin to relax.  My legs are cramped and I am completely bent over.  Slowly I can lift my back up and start to walk normal.  My neck and head are completely kinked and my arms are normally numb.  I am not saying all this for any other reason than mornings are terrifying.  I am so worried that one morning I will not be able to move.  I kept praying about this and I kept hearing the same thing, "You need your family."  I am so thankful for my mom and dad who jump in when Tim can't.  I knew that they would take the kids to church if I could not.  After missing several weeks of church, because I could just not do it on my own, I went to church with my mom and dad.  It has been a really good experience.  The kids love being with PopPop and Grandma, and it is great for me to have some extra hands.  We have decided that we need family and church to be one now.  This way the kids are at least hearing God's word even when I can't be there.  So St George Byzantine Church has become our new home.

I feel I have a weird view on religion.  From my many travels of church families I have seen one common thread...many people who desperately love their Lord.  They sing different songs, say different prayers, and may even read different interpretations of the Bible...but they all share Christ's love.  I feel I have found a home in all these churches.  I feel blessed by the many relationships and perspectives I have seen.  I am excited to see where God will lead us as a family, and what I will learn in the future.  For now I am thankful He keeps nudging me in the right direction for our family at that time.  I pray that this will not divide me from any of you but reinforce the great love we share!