Chiari - My Health Story



The pain was excruciating.  It never let up.  I was down to my last drop of hope.  If something didn't change soon, I thought ... I would literally die. This is my story of walking through an intense season of both physical and spiritual darkness and finding God in the midst of it all. 

This ... is my healthcare story.  The first part of it is giving you a background of what I walked through and then I share what God taught me in the midst of it all.  

If you are struggling with despair, know one thing - there is HOPE.  You can find light in the darkest nights of the soul.

MARCH - 2010 

In March of 2010, I woke up one morning in horrific pain. I was just about to finish a year long school of ministry with my friend Graham.  I developed, launched and led this school.  

It was a very powerful time and hundreds of pastors and leaders were learning how to live life from God's voice!  They were learning more of what it meant to live in spiritual freedom.  

hey were learning how to walk intimately with God and how to live in their God given identity!  It was here that the enemy came to seek, kill and destroy - me and my calling to ministry.  

But, the good news is - God is good and God is redeeming everything that the enemy meant for evil!  

The pain radiated in my neck and in my head. It was not your typical headache. I couldn't turn my head at all. I had no idea what it was ... however ... I knew it was something significant. 

Deep in my spirit, I knew I was entering into the biggest spiritual battle of my life.  

A few days after waking up like this, I went to see our family doctor who told me it was just stress and to take some vicodin for the pain. I told her I didn't think it was just stress but she insisted that it was - and even at one point she had me lay down in the office she started pulling and yanking on my neck.  

I literally started crying the moment she touched by head.  She didn't order any sort of tests because she said that I hadn't been in an accident or anything that would of preceded this sort of pain.

I went home and like the doctor ordered - I rested and took the medication. Although the pain medications did absolutely nothing to alleviate the pain.  

We had already purchased tickets for a family vacation and so ... off we went to Minnesota, the Florida Keys and on a cruise. The entire trip, I was in horrific pain. It literally never stopped 24/7.  The pain was over the top bad.  And when I say pain, I am not talking about a minor headache. I am taking the kind of pain that makes you cry and leaves you feeling hopeless.  

MAY - 2010

We went on vacation and came back. There still was no change to the mobility in my neck or the pain going on in my head. It was so bad after weeks of waiting for something to change I finally told my husband that we needed to go into the ER. I knew there in the ER - they would have to do tests to see if something really was wrong with me.  

Immediately they did both CAT scans as well as MRI's of my head and neck. 
  • The results of those tests showed two things: 
    • cervical spine MRI showed that I had three ruptured and herniated discs in my neck (C4-5, C5-6, C6-7) which was caused by disc degeneration and facets disease (arthritis in your joints).
    • they showed I had a sinus infection in the sinus that is way in the back of my head. It also showed that I might have something called a pseudo-tumor ... which means your brain thinks it has a brain tumor but it doesn't.
The ER discharged me and told me to follow up with my ENT (Ear, Nose, Throat) doctor for the sinus infection.  When I met with my ENT - she confirmed I had an infection and put me on some antibiotics.  

However when I showed her my CAT Scan and MRI results from the ER she was deeply concerned.  She told me she wanted to call her friend who was a neurosurgeon to see if she could get me an appointment with her right away.  She got on her cell phone and called this neurosurgeon and shared the details of my case with her. 

This neurosurgeon was gracious enough to get me in right away!  I was so thankful to God for this! 

This was a huge answer to prayer!  I had been asking people to pray and fast for breakthrough so I could get into the right doctor who would help to diagnose what was going on with me.  You can't treat something if you don't know what it is! 

This whole health journey has been one of breakthrough, revelation and how we needed to turn to God in every step and in every decision we made.  
God could of healed me in moment 
but He chose to teach me more valuable lessons 
by allowing me to walk through the darkness! 

God answered that prayer by sending me to an amazing neurosurgeon.

JUNE - 2010 

Before I saw my neurosurgeon, she ordered up some eye testing to see if I had the pseudo-tumor. When I got in to see the neurosurgeon (which was within a week), she had already reviewed my CAT scans and the MRI's. The tests confirmed I had a couple major things going on with my head and neck.  
  • One, the cervical MRI's show that I had some serious things going on in my neck due to some herniated and ruptured discs from C4 to C7.  The one of greatest concern was my C5-6 disc which was so narrow that even a slight accident could of left me paralyzed.  She said the stenosis in my neck at the C5-6 level was pretty severe.  Stenosis is a narrowing of the spinal canal and if the narrowing is moderate to severe it can cause compression on the nerves and permanent damage to the spinal cord and ultimately to your body and organs.  Her recommendation was for me to first try some epidural steroid injections to see if those would bring down the inflammation.  She wanted to do this before considering what is called a spinal or disc fusion.  I think the insurance companies probably want to know too - that all other measures were exhausted before resorting to surgery.  A spinal fusion or disc fusion is basically when they remove the disc and then they put in new bone and then fuse the two vertebras together.  They then put a metal plate into the neck to stabilize it and to remove any compression on the nerves and reduce any risk to the spinal cord.  The goal is to decompress the nerves and to open up the area in the spinal canal.
  • Second, she found out that I had something called "Chiari Malformation".  The radiologists at the hospital did not even catch this on the MRI's.  As my neurosurgeon was reviewing my brain MRI prior to our appointment, she was the one who caught this!  She said the Chiari Malformation, is when your cerebellum (the back part of your brain) is too large for your skull and so - that part of your brain is compressed down into your brainstem area. This part of your brain has no where to go so it begins to herniate into the brainstem area. She said mine was what they called moderate because the herniation was only 5 mm.  She said there had not been enough studies done of surgeries with this minor or moderate of a herniation. She, at that point, did not feel that was the more pressing issue causing all my horrific pain - so we began a treatment plan to focus more on the neck and the ruptured discs.

AUGUST - 2010 

So, in early August of 2010, I had a steroid epidural injection into my C5-6 disc area. The goal of this was to bring down some inflammation in order to alleviate some of the pain.  We waited a few weeks to see if it made any difference in the pain levels or in the mobility of my neck.  It did nothing!   


SEPTEMBER  - 2010

So, in early September of 2010, I went in for a follow up appointment.  I still was in horrific pain every day.  The kind of pain that really left me immobilized and in tears every day. None of the pain pills I tried did anything. I was still not able to move my neck hardly at all. I couldn't turn my head to the left or to the right. It was nearly impossible to drive a car. 

In the office of my neurosurgeon, I sat there sobbing. The pain was so unbearable and it was driving me to moments of despair.  

So, in discussing our options it became apparent that we needed to do the disc fusion surgery.  It was scheduled for mid-September. 

The surgery itself went very well.  I was in and out of surgery in a few hours.  My neurosurgeon was very pleased with how the surgery went.  She truly is an amazing doctor! She is blessed both with the expertise as well as the bed side manner! Smart and compassionate! Truly a blessing from God in my life at that time.

My aftercare in the hospital was a whole other story. A nightmare actually. 

When I got out of surgery, they wanted me up and going to the bathroom right away.  Why they do this is beyond me!?!  I would think they would want the anesthesia out of your system before wanting you up and walking for liability reasons!

Since I was still on the IV and they were giving me lots of fluid - I needed to go to the bathroom. A lot!

At one point (just a few hours after surgery) - I rang the nurse in order to get help going to the bathroom. My husband, my sons and my mom had gone down to get a bite to eat in the hospital cafeteria. The nurse brought me to the bathroom and then left me there.  

I tried to ring the nurses station from the bathroom but no one answered my call for help. So, I tried to make my way back to my bed ... holding onto walls.  Because I was all loopy from the medications, I tripped on the IV cord and pulled the IV out of my arm and blood went flying everywhere.  All over the walls, me and the bed.  

I also jerked my neck in the process and my pain levels sky rocketed off the charts!  

When I got out of surgery, I had relatively no pain at all. I literally thought God did a miracle and healed me completely in the surgery. 
  
But right after this incident - the pain levels became out of control. So, they started me on injections of morphine into my IV.  What I didn't know at that time ... was that I was highly allergic to morphine. 

After my first dose, I began to violently throw up. I tried to do everything I could to not jerk or move my head while getting sick ... but it was next to impossible.  The nurses had to call my neurosurgeon all night long to give her updates.  It was a night of intense spiritual warfare.

They kept giving me more and more morphine.  And the throwing up kept getting worse. Until finally, my husband told the nurse to not give me any more medicine so that my body could get rid of the drug. No one was putting together the fact that the morphine was getting me sick!  Hello?!  It is not uncommon for people to get violently sick from morphine!  

The nurse yelled at my husband and told him "you will be wasting this medicine if you do not use it up!!".... she said this as she was trying to administer more morphine.  My husband replied to her (he is a very Godly Christian man) replied ... "to get that  ... bleep!, bleep!, bleep! .... needle out of her IV now!".  

I seriously, with all my heart believe if this nurse would of gave me that morphine, I would of overdosed.  

By the next day, the morphine was making it's way out of my system and the throwing up finally subsided. And in about 3 days, I was released from the hospital to recover at home.  I don't think I will ever go into a hospital again and not have someone with me 24/7 to ensure the nursing care is right on and that there is accountability for how they treat their patients.

OCTOBER 2010 to MARCH 2011 

For the next six to eight months, I spent a great deal of that time recovering and resting in bed. For the first three months I had to wear one of those hard neck collars all day long.  I was blessed to be able to take it off to shower!  Oh, those showers were the best part of my day! 

My recovery took a long time. During the surgery they had to move my trachea completely out of the way to get the spine in my neck.  As a result, I had major problems swallowing for almost two months.  I had to relearn to swallow by using tootsie pops!  Funny thing is?  I got 9 cavities from this!  Six months after my surgery I went into the dentist only to find out that was probably not the best choice for rehab! 

One time, I inhaled a pill into my lungs.  I tried to swallow it but since I was having problems swallowing, I ended up inhaling it instead!  This put me into the hospital to where my lungs had to be flushed so that no permanent damage was done to my lungs!  Crazy! 

The fatigue from the surgery left me with NO energy to do much of anything for almost a year. I don't think anyone really tells you that when you have a major surgery - it is a good year before you really feel better (at least when you are older like I was).  My expectations were set that within 3 months, I would be back to my normal lifestyle again!


The lesson here?  
Don't ever put an expectation on anything.  
Learn to surrender to God's timing and way for EVERYTHING.  
Your heart will remain in peace if you learn to flow 
with God in your health care crisis.

I spent a great deal of time in bed, resting and talking to the Lord. I entered into VERY deep places of stillness with the Lord. My time with the Lord was very fruitful. There were so many things I was processing with him about my health and about other things going on in my life.

The pain in my neck changed a little bit (only at the C5-6 area) after the surgery but the mobility in my neck was much better!   

Although after about six months (which is when they say you can start getting a good read on how successful the surgery was), I was still having severe head pain. 

My head felt like a balloon that was ready to pop at any moment. I also had explosive pain in the back of my head, at the base of my skull.  

JUNE - 2011 

When I went in for my follow-up appointments with my neurosurgeon, we talked about the remaining pain, the neck issues and the Chiari. She didn't think the herniation from the Chiari was not significant enough to be causing the symptoms I was having since it was only a 5 mm herniation.   She did recommend that I could talk to her partner who specialized in Chiari.

However, because I had done so much research on the Chiari Malformation - I knew that one of the ONLY ways to really determine if the Chiari Malformation was causing any issues with the brain and the pain - was to do what is called a CSF FLOW STUDY (CSF). This MRI tests to see how the spinal fluid is flowing through your spine, through your brain stem and around your brain.  This gives the surgeons a better idea if the compression from the Chiari is causing any blockages - which can lead to horrific spinal headaches due to excess fluid or not enough fluid ... getting to your brain.

I brought this test up with my neurosurgeon and told her that I wanted this test done right away to see if this "moderate" Chiari was affecting the fluid flow to and from my brain. 

And sure enough when the results came back it showed that it was!  I had a pretty severe blockage. 

This is where I think we made some poor decisions ... because even though we knew this - we chose to take a more conservative approach by dealing with the occipital nerves / occipital neuralgia rather than pursue the Chiari surgery right away. 

I think we made this choice because there was not enough research done at this time for 5 mm herniations and because my neurosurgeon was very conservative.  She said she didn't like to do brain surgery unless she knew it would have significant results - improving the symptoms.  

I think I was a bit overwhelmed with the thought of having brain surgery and having part of my skull removed.  Looking back, I wish I would of meet with this other neurosurgeon right away for a consultation.  

He seems to be a bit more aggressive with getting in there to resolve the problem quicker (he has done a Chiari surgery for a friend of mine).  

And so, we decided to see a spine pain specialist instead for possible nerve related pain with my occipital nerves.   

SEPTEMBER 2011 to DECEMBER 2011 

So, from September to December in 2011, I went through a series of procedures called "nerve blocks" and "nerve ablations" in my cervical spine.  I think they were trying to rule out whether the Chiari was causing the pain or if it was all the issues in my neck. 

The goal was to calm down the nerves that might be overactive due to the facets disease in my neck.  Part of these nerves are the occipital nerves which can often be a root cause for headaches if facets disease or disc degeneration disease is present.  

The nerve blocks serve as a diagnostic test to find the specific nerve that could be causing the pain. The ablation then, burns the nerve to the point of killing it - so that it can no longer send pain signals to the brain. 

This whole journey from March of 2010 ... up until this point ... was really about finding out WHAT specifically was causing all the explosive head pain.  

I don't call them headaches - because it was nothing like a normal headache.  It was severe, stabbing, explosive pain that manifested in the back of my head and to where my head felt like a balloon ready to pop at any moment.

By Christmas of 2011, the pain was once again over the top and the pressure in my head was unbearable. 

So, after Christmas, I scheduled another follow-up appointment with my neurosurgeon.  

Now remember ... this is coming up on two years of constant pain - and the wearing down on me - emotionally, mentally, spiritually and physically.  


JANUARY - 2012

In mid-January, I had a follow-up appointment with my neurosurgeon. The moment she walked into the room - I lost it sobbing.  Like the kind of crying when you can't breathe.  I couldn't even open my mouth to share how I was feeling. I told her I couldn't handle these pressure headaches any longer. 

She agreed that we had tried all other conservative methods and it was time to have the decompression brain surgery for the Chiari Malformation.  I think I was also more than emotionally ready for the brain surgery.  

I was ready for the risks that are involved when they have to open up your skull, cut into the lining of your brain and do what was needed to decompress the cerebellum. 

And so, we began to discuss the surgery.  Because she did not specialize in the Chiari surgery, she wanted her partner to do the surgery since Chiari was one of his areas of speciality.  He is one of the top Chiari surgeons and he happens to be in Sacramento!  Thank you Jesus!

And because she was actually moving to another city in a few weeks - she wanted to assist in my surgery before she moved.  I was so thankful for this because I truly trusted her and to have her in the room during my brain surgery brought me a ton of peace.  She had been on this journey with me for a few years.

I had never met the man who would do my brain surgery except for two minutes in a pre-surgery appointment.  I was SO thankful to God that we did the surgery in a time frame where my neurosurgeon could be a part of it. 

So, my surgery was scheduled within two weeks again!  

The goal of the brain surgery was to decompress the cerebellum so that it no longer put pressure on the brain stem and so that it no longer blocked the spinal fluid from getting to the brain.


FEBRUARY - 2012

I had the surgery the first week of February and like with my neck surgery, it went well.  I was in and out of surgery within a few hours. 

And this time they put me in a Neuro ICU and the hospital care was amazing! My husband stayed with me 24/7 just in case. 

I was in a ton of pain.  Far worse than right after the neck surgery.  I guess they did remove part of my skull so of course that is going to hurt some!  

This time, they gave me a different pain medication and so I didn't have the side effects.  Overall, this hospital stay was top notch! 

I stayed in the ICU for two nights and was released from the hospital on the third day. The third day - hahaha!   A little Christian joke there.  



MARCH 2012 to DECEMBER 2012

The year of 2012 was another season of healing ... and recovery from brain surgery.  
I am SO thankful that I had the surgery because I totally believe the blockages and the compression on my brain stem was causing "part" of the problem with my head pain.  Not all of it but a big part of it.

I've come to realize over time ... that it was not just ONE health issue going on with me - there were many and with each procedure we were chipping away at the issues causing the pain.  They all just happened to be from the shoulders up! 

I will never forget my GYN tell me that the Chiari surgery saved my life!  In one of my appointments with her, she said that she recently read an article that mentioned how untreated Chiari is linked to strokes and other brain related health issues ... because of the blockage of spinal fluid to the brain and stress to the blood vessels going through the brainstem area.  

I am not sure if this is true or not. Although, I agree with her - I am thankful I did it. 

My only regret was waiting so long to do it.  I felt if there was any blockage to the fluid to and from the brain - it should be structurally restored and should of been done right away.  

The neurosurgeon who did my Chiari surgery told me in a follow-up appointment that if the surgery is not addressed promptly - it is not uncommon for their to be permanent damage to the brain stem and to the nerves if the decompression is not done in a timely manner.  

I am still not quite sure the role of spinal fluid in the brain - but I don't think God would of created it if it didn't play a vital role in the health of the brain and the spine! I think he probably created it to work and flow properly so the brain and the spine could operate on an optimal level!

THE YEAR OF 2013 & 2014 ...

I wish I could say I am pain free now but I am not.  I still struggle with daily pain and migraines.  

Although, I think we have finally narrowed down the remaining pain issues to the occipital neuralgia, nerve damage and the migraines.  Recent MRI's in early 2014 show that I still have residual blockage of the CSF flow when my head is in certain positions.  Which - basically means, the CSF fluid is not flowing well through my brain stem area.  This blockage definitely affects how I am feeling each day! 

OCCIPITAL NEURALIGA

I am not sure if the occipital neuralgia is still here due to the nerve trauma from the prolonged compression of my cerebellum onto my brain stem OR if it is because of the issues going on with the discs and the facet's disease in my neck. Maybe it is a little bit of both? 

It is not uncommon for Chiari patients to also have disc degeneration disease.

My spine pain specialist and I - attempted the occipital nerve blocks and nerve ablations again in 2013 ... to see if this helps reduce the residual pain that is left after all the other procedures.  


MIGRAINES

The other remaining area where I am asking God to heal me is with migraines.  They have changed since the Chiari surgery.  I am not sure how much of the migraines are related to hormones (I am in that lovely season of life), or due to the blocked fluid in my brain, or due to the occipital neuralgia.

I now get them with auras, and I lose eye sight in my right eye and they manifest like a stroke where my right side of my body goes numb.  

I know I am in the fun season of menopause and that almost ALL of my mother's sisters (and my mom) struggled with intense migraines during their menopausal years.  

I know estrogen plays a KEY role in migraines and in brain health.  I keep asking the Lord to create a profession where there is a neurologist who is also a GYN menopause specialist  - since estrogen is KEY to brain health (concentration, focus, depression, etc..).  

I have been trying to find great healthcare for this issue but it has been a frustrating experience.  The neurologists send me to the OB/GYN and the OB/GYN send me back the neurologists due to the Chiari issue.  But most neurologists do not understand the effects of Chiari and fluid changes on the brain!  


SUMMARY

In all of this health care hoopla over the last four years, I have learned that there were MANY things coming into play with my neck and head and it took a LONG time figuring out WHAT was the root cause of the pain.

Like anything - getting the root issue always helps to bring about healing - whether we are talking about inner healing or physical healing.

I learned that with each health concern area - there were different root causes and different treatment plans needed for each.  

It truly was like untangling a big mess of yarn.

Besides going through this - I had two other spiritual tsunami's hit my heart during this season.


Here are the specific health issues that I had and what was revealed to me over these three years and how the doctors and I .. began to treat each of these issues.  

I am summarizing this for those of you who are struggling with Chiari or cervical spine issues so you might get clarify on the kind of pain you are having and possible treatment options for you.

CERVICAL SPINE
  • Disc Degeneration - Ruptured or Herniated Discs at C4-5, C-5-6, C6-7
    • SYMPTOMS  
      • neck immobility
      • weakness, tingling in arms and hands
      • neck pain (sharp, stabbing, piercing)
    • TREATMENT  
      • surgery with a disc fusion in September of 2010
      • nerve blocks in fall of 2011 and again in fall of 2013
      • nerve ablations in fall of 2011 and again in fall of 2013
      • pain medications
    • RESULTS FROM SURGERY
      • neck mobility came back! 
      • severe pain in lower areas of cervical spine were reduced (C5-6 and below).
      • still have upper cervical spine pain (occipital neuralgia)
  • Facets Disease
    • SYMPTOMS  
      • pain (deep, aching, throbbing)
    • TREATMENT 
      • nerve blocks in fall of 2011 and again in fall of 2013
      • nerve ablations in fall of 2011 and again in fall of 2013
      • pain medications
    • RESULTS from ABLATIONS
      • pain levels came down to the point of being able to manage pain with medications.

BRAIN
  • Chiari Malformation
    • SYMPTOMS
      • head pain (explosive, like my head was a balloon ready to pop)
      • occipital neuralgia (either deep throbbing pain at the base of your skull OR intense, explosive pain in the back of your head that radiates through to eyes) due to the compression of your brain stem and your occipital nerves
    • TREATMENT 
      • decompression surgery in winter of 2012
      • pain medications for occipital neuralgia 
    • RESULTS FROM BRAIN SURGERY
      • explosive head pain went away for good! yahoo! 
      • occipital neuraliga was no longer a 24/7 horrific pain experience, pain became intermittent.
      • possible permanent nerve trauma due to prolonged compression on the brainstem and upper cervical spine.
  • Migraines 
    • SYMPTOMS
      • headaches (specifically in the back of my head or on the right side).  They have changed over time.  My migraines now mimic a stroke.  Changes to sight in my right eye, aura in my right eye and weakness on my right side of my body.  
    • TREATMENT
      • migraine medication (Relpax)


MY SPIRITUAL LIFE

What did God do in my heart?

Oh boy.  Where do I begin? God did so much in my heart and taught me so many things in this journey.  


It literally was a journey of finding God in the darkness ...
....  and a journey of surrender. 

We all "think" we are surrendered until we truly face death or some sort of painful event. When we do, we realize that nothing much matters in life but God and the people you love (family).  Everything else is rubbish.


SPIRITUAL FOCUS

The greatest thing this health crisis did for me was to give me a unwavering spiritual focus on God. Because of the amount of physical pain I endured for three years, there were days I wanted to die.  I was tired of the pain and it literally never letting up.

No amount of pain medications could even calm the occipital neuralgia and the head pain. There were SO many days when I would lie in bed and ask the Lord to take me home. Curled in a ball and sobbing. I struggled intensely with moments of despair and a spiritual heaviness .... and I would ask Jesus to hold onto me when I could not hold onto Him due to the physical pain. I would ask for His grace to get me through the moment; and through the day. I learned to live with God - moment by moment and day by day. 


I am literally alive today 
because I kept surrendering to the arms of GRACE to hold me.  
Grace literally sustained me.  
I knew I had no ability to keep myself, I needed Him to keep me! 

Every ounce of my being wanted to focus spiritually, emotionally and mentally on the physical pain rather than on God. My heart was consumed with praying for healing rather than simply knowing God in the darkness. 

I will never forget one time when the Lord asked me if I wanted healing more than I wanted Him.  And to be honest, I did!  Even the healing, the prayers and the intercession was standing in the way - like a wall between God and I.

If I was really honest, I would say I was angry with God that He wasn't answering my prayers and healing me.  I was angry that He would allow such afflictions in my body (via pain).  

I wanted to be rescued out of the severe bodily persecution going on with my body both in the natural and in the spirit. I wanted the darkness around me to end.  My heart was in a constant struggle with the pain.

It took me over a year for me to finally realize I needed a shift in this prayer BIG TIME. I needed to ask God to be with me in the darkness and to walk with me in it. 

To teach me how to stay focused on Him no matter WHAT was screaming at me in the Spirit or in my body.  To not look to the left or to the right - but to be 100% submitted to the Word of God.

I literally felt this Scripture was hanging over my life.  

"Satan has asked to sift you like wheat
 and I am praying Lori ... 
that your FAITH will not fail you ... 
AND when you are done you WILL go 
AND strengthen others".  
- Jesus.

That "when it is done" and you "will" gave me HOPE that this season was merely a chapter in the book of my life.  

It gave me the HOPE to hold onto - that another season would come - even though I didn't know when - God's promise over my life - was that this was merely a season.

The hope that I would once again be used to help others find their hope in God - no matter what sort of battle rages around them.

My faith was tested in SO many ways in this season. So many, I will need to write a book on it (pray for this!).  This is just a small spiritual snapshot of what God taught me and did in the deepest part of my being.

And not only was I walking through the fires of this health trial and dealing with horrific physical pain ... I also was recovering from some spiritual abuse and church wounds that hit my heart like an atom bomb.  


I literally was in the biggest physical and spiritual tsunami of my life. 
And  I mean just that - TSUNAMI.

And if you read "My Story", you will know I have already been through a lot. 

The amount of spiritual darkness that came on me in these three years was beyond anything I could of ever really tell anyone about. 

You can't tell anyone about this sort of spiritual darkness. Even if I tired to tell you - you won't "get it" until you walk through it.  

If you are walking through it now or if you have at some point in your life - you know what I am saying - without having to describe it. 

I felt like I was literally walking out a Job experience. The greatest testing of my heart and life was happening. Literally on all levels, including the response of friends and people around me.

And I know, I failed in SO many ways. I failed the people I loved and cared about.  


SOME DAYS ...
I responded like Jesus in peace, joy, love, patience and more.
OTHER DAYS ...
I struggled with frustration, grumbling, complaining, 
anger, depression and despair. 

I would get angry with the Lord that He would allow such prolonged periods of this kind of pain ... 

I would ask in the deepest parts of my being - if God is love and God is good and IF God could heal people with a blink of the eye (which I had faith for) - then WHY is He not healing me?  Why would He allow such levels of physical pain?

I had to struggle with those questions in the deepest part of my being and choose to surrender to the TRUTH that God is love, God is good and that God works all things together for the good of those who love Him.  To discipline my heart, my mind, my body to believe the Word of God ABOVE all else.

And even though I didn't know what any of this looked like in the midst of the spiritual and physical tsunami - I knew God would take all that I went through and make it into a life-giving experience for others.  I knew that this sifting from Satan would be used to strengthen others. 

Even my failures, mistakes and my inability to love or give in this season - He would turn it all around and use it for good.  WHY? 

Because He is a God of love and of GRACE!  He is the God who gives us a brand new start after we fail.  Like with Jesus and Peter.  After Peter's betrayal three times  - Jesus gave him the keys to the Kingdom!  To the keys to BUILD the church!  How amazing is that?  After utter failure, God says to Peter - I still believe in you and God's call on your life!  

This is one of the MANY reasons I am in love with my God.  Thank God Jesus was not a Pharisee!  

God is not a God who wants to punish us for our mistakes or to pass judgments on us.  He doesn't say - I don't like you anymore and so I want to end all relationship with you.  He is nothing like man - although man is made in His image! 

He doesn't speak out curses or punishment for the mistakes that we made (like people do behind closed doors) - He speaks out love, forgiveness, grace and mercy.

Judgment is the heartbeat of the religious spirit in man - and that is NOT God.  

God is merciful.  And at the core of His heart - is MERCY! And we should become merciful!  God developed a deeper heart of mercy in me.  Praise the Lord.     

GOD ALONE

In this season, I learned in the deepest parts of my being that God alone is enough.  To NOT say it flippantly or religiously - but to really mean it and believe it. 

My life passage is Philippians 3:7-11.  "Everything is rubbish compared to the priceless gain of knowing Christ".  Literally, because of my health and the months recovering from surgery - my ability to minister to others and to lead any sort of ministry went away.  I had nothing in me to give.  But, as I walked through this season, the Lord showed me that ministry had been an idol to me.  

Idols are funny because often - when we do "good" things for God, they never seem like an idol.  But, if we are drawing life or identity from them - they have become an idol.  

The Lord showed me that all the doing we do in church life ... is truly meaningless if it is not birthed out of being!  John 15:5. And if we are so busy doing and never abiding and being WITH God - we are probably working out of our flesh most of the time and being led by our ambitions.  It is in our being we become one with God's heart.  What is on God's heart begins to flow in and through our hearts.

God showed me that even the most nobel of pursuits like the revival of cities truly is meaningless if we are not helping people to know Christ and how to live life with Him every day.  We can pursue a momentary event but if we don't teach people how to live with God in the light and in the dark - they will not be able to be sustained in the spiritual darkness that is about to hit our nation.  

I really did love helping people. So much so that when God took it away for a season - I felt the void in my heart.  I knew I was drawing life from it rather than from God.  I would often sacrifice time with my family in order to serve others.  All of us in ministry say we have this in order - God first, then family, then ministry.  This is rarely true if we are honest.  We all get that high that comes from serving others.  It becomes like an addiction whether we ever want to be real about it or not.

There was another thing God did in me. I had begun to live my life more from prophetic words that people spoke over me - than by living my life FROM the Word of God alone.  Somehow, I got that all backwards.  I put a spiritual high, a spiritual experience above the Word of God.

I had gotten involved in a very prophetic church and didn't realize that I had begun to worship the prophetic and all the religious activities ... rather than seeking God through stillness.  


"Be STILL and KNOW that I am God".  
Psalm 42:10 

We are not commanded to do more religious activity to know God. If anything - we are commanded and encouraged to STOP doing them.

When I repented of this and entered into stillness - the Word of God came alive in me again!  Every Word I read in Scripture came alive and the power of the Word of God began to flow in me again.  What had died in me was being resurrected.  The Word of God.  Jesus; the living Word.

It took God getting me in bed for me to get this "adjustment" that I needed in my relationship with Him and in the deepest parts of my being.


It took this health crisis for God to remove the idols in my heart and for God to bring me back to the SIMPLE and PURE devotion to Him. 

GOD ALONE.  

All these things our hearts want in life - even good and religious ones are meaningless compared to the pursuit ... to get alone with God ....
in quietness to know Him.

The kind of spiritual focus that comes when everything is stripped from you - when the only thing that remains standing is GOD.  The blessing of possessing NOTHING but God Himself.

As AW Tozer would say - "there is no God AND. Only God."  God had to remove the "ands" from my life.  This included my desire for ministry and for a spiritual community (people). 


DEEP & STILL WATERS

Scripture says, "to be still and know that I am God".  I will never forget after my neck surgery when I was so frustrated at the amount of months it was taking for my body to heal.  I remember sharing my frustration with the Lord.  I remember trying to get out of bed and I literally felt the hand of God pushing me back into bed.  

When I asked Him what the heck He was doing, He said, "BE still Lori and KNOW that I am God.".  My pastor at Bayside Church texted me that verse the day of my brain surgery.  I knew it was something God was speaking over my life in this season.  Knowing God comes though stillness.

God, through this health crisis took me into the deepest waters of stillness.  I literally almost spent three years in bed.  


Three years of not being able to "do" anything ...
... other than to learn how to cultivate "being" with God.  

I literally could do nothing but pray, read the Word and stay in bed for hours on end.  I learned to enter into stillness with God. To get through that uncomfortable feeling when you are naked before your God.  When he looks beyond all your sin and looks into your heart.  When His love pierces into every part of your being. 

In this season, He taught me more about how to gaze upon the beauty of His face, how to sit in the presence of the Lion of Judah and how to crawl up into the arms of my daddy in heaven who loves me. 

At first, I fought this wonderful opportunity. I didn't see it as a gift.  I saw it as hellish torture.  I didn't see it as God calling me deeper. 


It IS in the still waters of our hearts - we come to KNOW GOD intimately.

God brought me back to the very thing that drives me and that drove the Apostle Paul - "EVERYTHING is rubbish compared to the priceless gain of knowing Christ Jesus my Lord."  Yahoo! 

The work of God had gotten in the way of my knowing God and this being the SOLE desire of my heart.  God restored my heart to Him and to what makes me tick in every fiber of my being - knowing Him, loving Him and being loved by Him.

This kind of revelation and understanding of God can only come through the avenue of stillness and God gave me a three year opportunity to BE with Him.  

Three years - the same amount of time that the Apostle Paul spent with Jesus when he went into the wilderness before the launch of his ministry.  

What did God do in my family?

God did so many things in us as a family.  He drew our hearts closer to Him and to each other.  We learned as a family to hold onto God and onto each other.  I learned how to be served rather than to serve (being the mom) and I learned what it meant to be truly humble by allowing others to care for me.

My sons learned, as teenagers, what it meant to be a servant as they often had to care for me.  They had to take up more of the household chores while I was recovering.  They learned what it meant to be married - in seasons of better and seasons of worse, in seasons of sickness and in health.  Lessons that only life can teach you.  Lessons that ... when we make Christ our center ... He will bring life from any sort of chaos. 

God used this season to raise up two Godly men who... I know in the future ... will love their wives well and who will serve selflessly in their future families that they lead.  I often tell my husband that if God put me in bed for this alone - I would be so thrilled.  My boys truly have learned a level of servanthood in the family unit that I could never of taught them.  

I am SO proud of the young men God has given me and for my husband who served me so selflessly for so many years.

God gave me my family who showed me that God is not a God who will abandon, forsake or leave His children no matter what! 

My family revealed this part of God's heart to me!  Praise the Lord.

Is there hope for people who struggle with health issues?

Yes!  There is hope.  But it is a hope that no one can really show you.  It has to come in the deepest parts of you as you seek God.  To know Him.  To find Him in the darkness.  It can't be preached, it can't be read - it has to be experienced.  It has to be cultivated in a personal relationship with Jesus Christ.

You have to learn to turn to God in the deepest parts of your being.  To not give up praying.  To not focus on the hellish circumstances around you - but you must focus your entire being on knowing God through His Word.

The enemy will do everything he can to steal your focus.  To bring on fear, torment, discouragement, despair.  He will tell you there is no way out.  This is a LIE. 

He will tempt you to whisper curses over your life like "I want to die".  Pay attention to what you are thinking and make sure your thoughts align with the Word of God.  Don't agree with the negativity, the grumbling and the whining.

The enemy will not let up until he beats you down to nothing.  BUT!!!!  Don't give up hope. No matter how intense it gets - TRUST GOD TO KEEP YOU!  Trust Him to keep you when you can't hold onto Him.  Put your hope in GOD.

Don't stop looking to God.  Don't put a time frame of God's deliverance.  Don't believe the lies that God is not good or that God does not care about you.  Don't believe that He is powerless.  Don't believe that He does not care - because He does!

Whatever you do - resist the lies that there is no hope.  It will take the work of God's grace to help you focus your entire being on God.  You can't do it.  You need the work of God's Holy Spirit.  Trust Him to do it for you!  Let go of control and your desire to find a way to be healed.  God may or may not heal you - but what is true - is HE WILL LEAD you through the darkness.  He will hold your hand.  He will love you.  He will warm your hope.  He will be the light just around you even though you still might be walking through a spiritually dark tunnel. 

Look at this health crisis as a chapter in a long book.  It is just one chapter.  It does not tell your whole story and it is not the end of your book.  Allow God to write the book, allow God to turn the pages, allow God to decide when the next chapter starts.  Walk with Him as He writes it.  

The greatest thing the enemy wants to do in the midst of your health crisis is for you to give up hope and to give up on God.  With all your being resist this lie and this strategy of the enemy.  If you are weak and without hope?  Ask people to pray for you.  Find a church to call home.  There are even great online churches where you can get prayer and help.

The enemy will also try to keep you in a trap of negativity.  At one point I joined a Chiari help group on Facebook.  I ended up leaving the group because everyone was grumbling and complaining.  Trust me, I know this grumbling.  I weaved in and out of it during this season.  But I will tell you - it did me NO good for my heart and soul.  It only led to anger and frustration.  The moment I began to feel that way - I turned to God.  I would cry and repent and ask Him to purify my heart.  To make me thankful even for what felt like hell all around me.  I asked Him to help me learn to navigate the darkness.  I asked Him for the light of His Spirit to arise in me - despite the darkness that was doing everything it could to get me to partner with it!  RESIST the enemy and run into God's arms.  Depart from evil and do good.  Draw near to God and He will draw near to you.  God will give you a way out and a way back into His presence.  Keep seeing HIM no matter what.  And on your weak days - ask a few trusted friends to be praying for you!

BUT, in the end, it comes down to you and God.  This journey you are on - is one where you have to learn to walk it out with God.  You have to learn to feed yourself on the Word.  You have to learn how to be still with God.  You have to learn how to surrender and how to let go of all control.  You have to learn how to cultivate intimacy with Him.  You have to hear His voice and most of all you have to learn to become spiritually strong and to push the enemy off for yourself (not in your flesh but empowered by the Holy Spirit in you). 


MY ADVICE - Be Your Own Advocate!  

My final advice for anyone in a health crisis - is to be your own advocate!  Throughout my whole journey, the thing God taught me most about the health care system is that they are not there to be your advocate despite what their advertisements say.

If you have a health care concern - do your research.  Learn the symptoms, learn the treatment options and learn what diagnostic tests are needed and then keep pushing your doctors for those tests!  

If you don't get the care from one doctor, go onto the next doctor.  Don't stop until you get a diagnosis and a treatment plan.  If you don't click with a certain doctor, move onto the next one until you do.  Some doctors are the most caring and diligent doctors and others are simply incompetent.  

Don't give the power of your health over to the doctors.  Don't just do what they say.  In looking back, if I could "re-do" anything, I would of had my Chiari surgery right away - as I truly believe the compression on my brain stem has caused permanent nerve damage.  I wish I would of pushed that one through quicker as one surgeon told me - that the longer you wait - the more risk you have for those symptoms you had prior to surgery being permanent.  

Again, be your own advocate!  

Do your research, ask for diagnostic tests and when your heart gives you that check in your spirit that something is still off or wrong - listen to the Holy Spirit in you and keep pursing options for your healthcare!  God will keep leading you as you seek Him for wisdom, direction and understanding!  


This is your opportunity to know Jesus as the Great Physician 
and as the God of all comfort and the God of all hope!  

This is your season to KNOW with every fiber of your being that no matter WHAT faces you - WITH CHRIST - you can overcome this battle!  

Let this song wash over you today!  
Allow the Holy Spirit and God's hope to arise in you!  

STAND with what the voice of God is speaking over your life!
STAND on the Word of God.
Use it as a sword against the powers of darkness.
  
REFUSE to bow down to the work of death in your body! 
Don't let it steal your joy, your hope, your confidence. 
Learn to encourage yourself with the Word of God.
God is 100% completely for you! 

You ARE an Overcomer!

With Christ, all things are possible.
In HIM, you have all the hope and light you need.

In HIM, there is no rejection, no trauma, no pain.
Learn to live IN God and learn to cast off the darkness that surrounds you!

Seek Him and He will teach you, through His Word how to do this!    

   









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