Derek’s Journey Part 4

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Coming home from Japan, I stopped all travel, speaking engagements and went full force into demanding answers.  The doctor that did the initial surgery FINALLY scheduled some more tests.
A VNG (eye tracking) test clearly showed Derek was having significant problems.  So they started sending him to all kinds of specialists.  Anything that could be a possible cause for dizziness/ balance disorders is what they started looking at.
 Derek must have something else wrong with him, is what I was told. The 4 areas of ‘dizziness’ can come from: inner ear, brain, heart and eyes.  Derek was sent to specialists in every category.
We met with a very reputable cardiologist who ran all sorts of tests and everything came up fine.  Except when he had Derek do the ‘tilt table test’, or as Derek would describe it… the NASTY TEST!
Basically they lay you on this table and put you at a certain angle for a length of time and then wait to see if you pass out.  When they took Derek back, a male nurse, talked to me and admitted he was shocked Derek was having this test done. He kept saying, “Wow, they must really be stretching with him to find something wrong. “ When I asked him why he thought that, he said, “It is so rare that I see men in great shape, with good vital signs, like Derek.”
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However, the next time I saw that male nurse, he was looking for me and his face had a look of pure shock. He came up to me and said, “Well, I’ll be darn…..your husband was positive.  He passed out.”
This male nurse really seemed shocked and admitted he had not seen many people positive for this test, especially someone in such great shape as Derek.
Sure enough when they brought Derek back, he looked rough. Of course that whole experienced made Derek’s symptoms go through the roof.  He was miserable.
From Milwaukee to Madison, about a 2 hour drive, I was running him back and forth to different specialists. He had a rotary chair test that measured where his balance disorder was coming from… surprise surprise…..his inner ear.  He was abnormal for this test as well.
I have no medical degree, no degree at all. But one thing I have is common sense. It goes a long way in life.  The problem I was clearly seeing at this point was Derek was going to all these specialists, but none of them really consulted with each other. None of them worked together. They were quick to prescribe drugs, which were really irrelevant to what Derek needed. The more specialists he went to… the more confused and frustrated we became, the less they all communicated. Which was a perfect storm for a tornado of unnecessary meds and misdiagnosis… that simply left everyone scratching their heads.
It was now 6 months, into this nightmare. Derek longed for his life back. This was the longest time he had not driven since he got his license when he was 16 years old. He was craving to drive again.
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One thing he never lost was his will to fight to get better and he NEVER complained. Derek was amazing through this whole ordeal.  He was always more worried about the kids and me.
Six months after the 1st surgery he finally started driving, but only 5 to 10 minutes at a time. It was all he could handle.  He could drive to town, but couldn’t make it back.  It was awful watching him have to hand over the keys to me, because he was simply too miserable to drive. When he did that, it felt like I was robbing him of his independence. He was only 40 years old.
So I continued during this time to push through to get him to Mayo Clinic. Only time after time to be denied by the insurance company.  I lost appeal 2, 3, and 4.  All appeals included countless hours on the phone, faxing, scanning, refaxing rescanning…. This alone became a nightmare.  All the ‘appeal hearings’ were over the phone, in front of a panel of people that couldn’t see me or I them.  Every time, I would plead his case… it was denied over and over again.
The countless hours I spent on the phone and paper work is when I realized that the process to get someone to a big clinic was…. there is no process.
Paperwork gets lost or doesn’t stay together.  You have to keep the insurance company accountable and not wait for them to call you back, either you make it happen, or it won’t happen.
My motivation was Derek.  He wasn’t giving up and when he could have given up time and time again, he prayed through…. fought through….. and there was no way I was going to give up on him.
The reality was hard to face. Therapy had become a new lifestyle for us.  The bills were beginning to pile up.  I had stepped back from my work so much, to care for Derek,  that my income went down some, but I was still able to make enough to keep us going. It was all his therapy that wasn’t paid for by insurance that was starting to really put a dent in our lives. It was getting to the point that I had to make some financial decisions, and soon.
 We had worked hard over the years and had reserved money for crisis situation. I realized by August, I was in a crisis situation. It had been 9 months, but I just didn’t want to admit it.
I knew this was not good.  Not good at all.
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Mentally I was beginning to lose it, privately. I realized I had pulled back from all social engagements, volunteering, all the things we were involved in as a family.  A hopelessness feeling was beginning to drown me.
In social settings Derek was miserable. He couldn’t enjoy anything and there was no way I was leaving him.
In the privacy of my bedroom closet, where I would close the door, sit on the floor and cry out to God, “Please show me what to do” ……
This became my new therapy.
But imagine this…
God did come through for me, just not in the way I expected.  He did start to show me what to do…. Just not the way I thought He should do it.
One by one…. Little miracles started to happen.
The first, was a small package that arrived in the mail. It was a book called, ‘The Circle Maker’ by Mark Batterson and a 40 day prayer challenge called ‘Draw the Circle’as well.  Along with it, was sent a prayer journal.  This woman that I worked with, and had seen me a few weeks earlier at a conference, and I shared with her in a private moment, my raw pain.
  A few weeks later, she sent me these 3 books and said….
”I’m praying circles around your family.”
But I didn’t get it.
So, I put all three books aside.
Those 3 books sat on my countertop for 3 weeks. Every so often, I would see them, and it was like a slap in my face. But still I refused to pick them up.
I didn’t have time to read a book.  I didn’t even have time to eat, or go to the bathroom, let alone read a book.
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Until one morning at 4 am. I was up, doing office work before my nightmare of a day started, but I was so deflated, that when I went to make my tea that morning……. those silly books stared me down.
Something pulled me towards them, like a magnetic force and I picked one up and started to read it that morning.
That morning, changed everything for me.  A new addiction started.
From then on…. Every morning, I got up early as I usually did, but instead of going into the office, I started out with a morning devotion.
Reading the  40 day prayer challenge, for 40 days, I started a whole new routine. A whole new outlook came upon me.
A whole new strength renewed me, to help push me through. To keep going… though I would continue to be relentless… this wasn’t my battle to fight anymore.
 It was God’s.
This became a huge turning point for me.  I began to realize, that though I was a strong Christian with a solid faith, or so I thought, I was the furthest thing from having a relationship with my King of Kings and Lord of Lords.  I was simply a ‘Christian by name’ passing through. This was the beginning of a whole new prayer life for me, little did I know at that moment. I am forever grateful, that my friend sent me those books and listened to God’s whisper when He told her to send them to me.
By October of 2013, the year mark of Derek’s new awful anniversary date was coming upon us. I along with everyone, just wanted him to go to Mayo Clinic.  It seemed to make logical sense, Derek was normal before the implant went in…. so let’s get that implant out.
This became my main focus.  With my renewed strengthened faith, God pressed forward while I followed.  I submitted appeal number 5, to get the insurance to accept his appeal, so I could finally take him to Mayo Clinic.
 I felt calmer, stronger, because I wasn’t carrying myself anymore. I let the Lord carry me.
Appeal number 5 happened, and I lost.
Appeal number 6 happened, and I lost.
That’s when, I told the ‘phone panel’…. As soon as they said, it was denied, start the process again, I will be your worst nightmare, till you get this to go through.
I know that wasn’t very Jesus like, but, my temper got the best of me after appeal number 6.
So, I started the process all over again. While we were once again in ‘LIMBO’, I kept researching.
Somewhere in between appeal 5 and 6, I had some amazing friends I worked with tell me about a place in Atlanta Georgia.
The Carrick Brain Center.
Immediately I looked it up and knew that by everything I read, I had to get Derek to this place. It dealt with all the symptoms he had.  However, nothing of real value, ever comes easy, right?
First, this place was in Atlanta, Georgia. I live in Wisconsin.  Next, this therapy wasn’t covered by insurance. It was over $1000 per day and they recommended at least 5 days and or more.
However, the more I read about it, I decided to reach out and see if Derek would be accepted into this program. I had no other options. He had done all the vestibular therapy in Wisconsin, and he was stuck. He had made no more improvements.
After I spent over a week, getting all his medical records in place, Derek was accepted into the program. Not having any other direction or choice and Derek was approaching the 1 year mark, I jumped on this opportunity.
 I didn’t know how I was going to make this happen, just that I had to do something. After praying over this, I knew that anything was better than nothing.
In November 2013, Derek and I flew to Atlanta, Georgia to the Carrick Brain Center. Word got out with our friends I work with, and before I knew it, an offer came to me that someone I worked with, had a grandson who lived in Atlanta. His name was Justin and he was going to pick us up at the airport and let us use his truck for the whole week. I couldn’t believe it.
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Miracles, one after another began to happen.
I didn’t even know this person. Sure enough.  We landed at the airport and the nicest young guy in his 20’s picked us up, made us dinner that night and let us use his truck for the whole week.
This random act of kindness, I will never forget.
God was guiding us. I could feel it. The random acts of kindness were His miracles left and right.
The next morning, we drove over to the Carrick Brain Center. I was honestly so excited, I felt like we were going to Disney Land to be honest.  When we got there, I stepped off the elevator and walked down the hall, and we saw the sign that said Carrick Brain Center. We walked towards it, but as we got closer, and stepped inside, the entire floor was empty. There was nothing there.  It was like the Grinch who stole Christmas. Only wires hanging.
I stood there, shocked, numb and wanting to cry… was this all a scam? Standing in that hallway, with Derek who was miserable,  and an empty Carrick Brain Center in front of me, was another huge LOW moment in my life.
But then I realized, try the number I had in my cell phone, for the center.  I called it, and to my surprise, someone answered. “Where are you?” was the first thing I asked.The woman was wonderful on the other end.  “I’m so sorry”, she said.  We just moved over the weekend and are in our new facility.
She gave me directions and about 5 minutes later, I walked into the most amazing facility yet. Our story of “being scammed’ was the joke that whole week.
Derek was their very first new patient in their brand new state of the art facility.
The next week, I witnessed a whole new level, of health care. It’s what health care should be.  These Doctors came from around the world to study through the Carrick Brain Center. This facility saw patients from traumas, concussions, strokes….. the list went on. Everything about this place was exactly what Derek needed. Derek made amazing progress while he was there. About 20 % better, which was huge.  They in one week, were able to rehab him from walking like a penguin to walking with a normal gait. It truly was a miracle.
This was just a huge win.  We came home with a whole new therapy program and Derek was doing therapy 3-5 times per day, 7 days a week, in our home. He still had a long, very long ways to go. But anything was better than nothing!
What we did learn in Atlanta was that something was still ‘holding’ Derek back, and the thought we all had was, that implant needed to come out. Something wasn’t right. Something was stopping Derek from overcoming this whole ordeal.
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Dec. 1st, 2013, was upon us.
I wasn’t in the Christmas spirit when it came to giving this year.  Things were now super tight financially. I had kept things pretty quiet. Only close friends and people I worked with new, but otherwise, I just kept a low profile. Our oldest daughter Alex had a fundraiser for a program she had told us she was doing through the Big Brother Big Sister program. There was a Christmas party for the “little brothers and sisters.”
She really wanted her Dad and I to come. But honestly, I was in no mood to go, nor was Derek. So, I just kept telling her, I didn’t think Dad and I could. But finally decided after a lot of her persuasion to come, we decided to go and support her.
As we walked up into the American Legion building in our small town, the filled room grew totally quiet as we walked in, and as I glanced around….. I realized, all people I knew. My first thought was, wow, everyone in town is in this program.
But then, I saw in the back of the room, my brother and Dad, Derek’s aunts and uncles from far away, signs saying ‘we support you Derek’, and then our kids came up and said, surprise!!!!
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Derek and I stood there stunned. It brings tears to my eyes, to write this. Actually I’m sobbing as I write this.
Derek and I both experienced our own real life, “It’s a Wonderful Life.”
Derek had become Jimmy Stewart.
What this man had endured for almost a year, did not go unnoticed.  The American Legion hall was filled with love. Everyone was there for Derek.  Just like Jimmy Stewart, Derek had an outpouring of love for all he had endured. People Derek had been so kind to over the years and helped, were now there in his greatest time of need.  This was by far the most heartfelt day of our family’s life.
Our dear friends that were in 4 H with us, were all serving food and wearing shirts that said HEIN-Y HELPERS. They had helped our kids put this all on together, they worked like crazy and pulled off a surprise benefit and raised enough money to pay for Derek’s latest therapy. There will never be enough thanks to all those that helped our family so generously. They were all God’s angels doing his work. I was honored to be with such amazing people.
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Another miracle.
I have never cried so much in my life.  Tears of pure humbleness.  Derek and I were always the givers. That is way more fun. Being the receiver was something neither one of us had ever been.
All I can say is, I was dropped to my knees and completely humbled. There were people who had so much less then us, giving. There were people who made unbelievable donations.  It was truly amazing.
There will never be enough heartfelt thanks from our family to all those who helped us in a crisis situation.
My Christmas gift for 2013 was that appeal number 7 had finally passed.  Derek was accepted to Mayo Clinic to have the surgery to remove the implant.
I had developed a relationship with the supervisor at the insurance company.  Let’s just say, she found a loop hole in the system, and instead of starting all over again, finally helped me to get Derek approved. It only took 12 months. I learned to ‘love thy enemy’ and the insurance lady became my friend.
After a long year, things were finally looking up. There was light at the end of the tunnel.
Christmas came and went. It was bitter sweet, to know that Derek was still so rough. He had  so far to go and yet a year of his life was taken from him.  But I chose to trust in God’s plan and was completely grateful to close out the year to go to Mayo Clinic….. finally.
In Jan 2014, Derek and I traveled to Mayo.  I remember the drive up so excited to finally get this horrible implant out and to move on with our lives. My prayers were bold….and I was going all in for a home run miracle.
However, once we got up there, we realized in the first appointment that the paperwork, was once again, ‘messed up.’  Derek had been sent to cardiologists because of his ‘tilt table test’.
We were scheduled with the wrong doctors.  What I had thought we were going up for, didn’t match at all with Mayo clinic’s record.
What I had worked so hard for….. a whole year, was screwed up. They didn’t care how far we had come, or how long it took me to get this approved.  The ‘paperwork’ was wrong. So, we were sent home.
We drove up to Minnesota for nothing.
Crushed we drove back home and it was when I was told by the insurance company that though it was there end for messing up, I had to start all over with the appeal process, which meant I had to resend everything in and plead his case all over again.
By this point, getting angry and crying had become a luxury. It wasted too much of my time.  So, I had become my own expert, after 8 times… I got it right let me tell you. Every paper I sent them, I talked to the person who received it, wrote down their name and reminded them, if this paper got lost, I would be their worst night mare.  (Sorry,  again,I know that was NOT Jesus like.)
At this point, I felt like I had no choice, but to seek out some legal advice. I have never been a ‘sue type person’. But the bills were piling up and all this happened from complications from a surgery.  Yet after speaking with three attorneys, none of them were willing to even meet with me.
Derek wasn’t a big enough case… so I was told. There wasn’t enough money for the attorney’s to go after the case. The doctor was too protected.
My question was… but what about the patient? Where is the patient’s protection?
I didn’t want big money. Just money to help him get better. That’s all I was asking.
Didn’t matter, we were on our own.
On this roller coaster of a ride, the 8th approval  was the charm.  Derek got approved, and by end of February 2014, we were heading back to the Mayo Clinic, this time, to see the CORRECT DOCTORS!
Driving up there, we took our son Gavin. Expecting a surgery, not knowing how long we would be there, we needed to bring our 11 year old son with us.  He was a positive distraction for us and we had hoped that this would also be very educational… trying to put the positive side on it.
Derek had a week long worth of appointments to determine his surgery and as we couldn’t afford much, we stayed in a dive of a hotel, and Gavin was amazing finding humor around all this.
Our hopes were at an all time HIGH, really believing and trusting that our home run mircle was right around the corner and Derek was going to get his life back.
What I wasn’t expecting, was that week, the Mayo Clinic denied Derek and refused to take the implant out.  They said that Derek had a 1% chance of improvement with the implant removed and an 80% chance that he would come out worse.
Every time I thought I hit an all new low in life… the joke was on me. I hit another new low. I was sitting in the Mayo Lobby, silently crying, tears streaming down my face, hearing that for 13 months, I fought for nothing.
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 Mayo Clinic’s idea of rehabilitation was an incredible high amount of drug, to ‘numb’ Derek’s brain and then pound him with vestibular therapy. The goal: to ‘reset’ his brain to find balance.
When we were sent to their vestibular center, I was shocked. It was like a kindergarten room at the Mayo Clinic compared to the Carrick Brain Center in Georgia. Mayo clinic is that far behind in vestibular programs.
That drive home, was by far, the most numbing feeling yet for me.
 I silently sobbed with my husband sleeping in the passenger seat, and our son in the back seat, most of the way home.
I had my “come to Jesus talk” and on the way home, thought if this is the MAYO Clinic, and they think this is best idea….we better just try their program.  Honestly, we had no other choice at this point.
From Feburary 2014 to July 2014, I watched what little life Derek had left, completely taken from him. This drug made him a complete zombie. His quality of life was ripped from him, even more. He literally floated through every day in a bouncing spinning world, now at a zombie speed.
Even though he was like this, he still fought to work, fought to try to sit on his back hoe and clear our farm fields. Sometimes for 5 mins, sometimes he made it 20 minutes, only to be back in bed for a day or too.  He tried to work… he tried to pretend these symptoms didn’t exist. But denial, only goes so far. For Derek… it didn’t go far at all. He ended up in bed with his head, the whole left side where his surgeries had been, packed in ice.
By mid July, Derek in privacy broke down and said, “I can’t do this drug Sarah. I’m going crazy.”
I could see it.  He was literally being robbed of his life, right in front of me.  In moments like this, you can only rely on blind faith, and just let the Lord carry you.  It’s all one can do. There were not enough tears left in my eye balls. My eyes were dry.
We knew that others had it so much worse then us. We had each other, our amazing children, and in your toughest times, you realize the people who are your deepest level of friends. You see the best in people, but you also see the worst.
We focused on all the amazing miracles that had happened… so many.  We focused on those.
That’s what kept us going.  Nothing else mattered.
So really… what did we have to lose? Nothing at this point.
We agreed……screw this plan of Mayo Clinic. It’s not working.  So Derek slowly started to wean off this horrible drug.  That in itself was watching him go through hell.
The same week, Derek started going of this horrible med… our world took another turn.
 Another huge shock.
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Our oldest daughter went through a crisis situation that would change her life forever, a parent’s worst nightmare for a daughter. The pain to describe what we witnessed her go through is indescribable.
 2 weeks later, our other daughter went down on us. Literally.  One day, she simply said, “I can’t walk anymore… it hurts too much.
At first, I thought nothing of it, but real quick I realized, something was wrong.  We learned through an MRI that from a  injury 3 years prior, she had also injured her spine and had some major complications now that could impact her the rest of her life.
So now, not only was my husband in rough shape, but 2 of my 3 children, were also up against the biggest battles of their life.
It was one thing to have Derek down. But when you factor watching your children’s lives turn upside down….. the  PAIN, SUFFERING, LOSS, and DESPAIR, was…all….. too…..much.
I had been at some pretty low times in my past life.  But those things happened to me…. not my husband. Not my children.
Derek WAS literally becoming a walking JOB.
His life was being robbed right in front of him, left and right, turned upside down and now he had to watch his two daughters live’s turned upside down and there was nothing he could.
At the same time…..I had a front row seat to this all…watching this horror movie that was… our REAL live.prayer-on-my-knees4
I remember the day… all to well, that I  finally collapsed to my knees in our driveway, and felt like Father Abraham in the bible, sacrificing Issac, except I felt like I was sacrificing my whole family and said, “Lord, I am yours.”
I lifted my arms up to the sky and completely sacrificed my life to HIM!”
By the end of July 2014 is when………… the conversations began with GOD……
To be continued.
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1 thought on “Derek’s Journey Part 4”

  1. Sarah,
    I have ached with you and your family as well I’ve read of this earth shattering journey. I’m so sorry you had to experience such pain… all of you. Yet, as one whose hope is in Christ alone, I see a “But God…” moment stirring on the horizon. A story like this can only be shared if hope exists!
    Blessings – those wellsprings of joy which are found in our Savior – to you and your family as you continue to walk by faith!
    Sherri Johnson

    Like

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