1. First Episode and ER Visit

Hello all of my dear family and friends!  

As some of you know, I have been struggling with some health challenges this past little bit.  I am so grateful for the support and love that has been given to my family and I during this time.  In order to keep people informed on my progress, we thought a blog would be a good idea.  

During this trial in my life, I have reflected a lot, and I have found myself wanting to reach out to others for their support.  There are so many people who mean a lot to me, and I want you all to know that you are a part of my life.

To quickly summarize, I have found out that I have a Chiari Malformation in my brain.  (Chiari is pronounced Kee-ARE-ee)  This is not life threatening, but it is a serious condition that can have difficult symptoms.  My symptoms have been quite severe, and we are trying to find the right surgeon to perform an operation that will correct the condition.  

It all started on November 14, 2014.  It was a Friday evening, and I had just completed my second week of training to be a psychiatric technician at the Utah State Hospital.  It was a busy day, but I was enjoying my work and looking forward to an evening of Christmas shopping and working on a few other projects around the house.  Justin (my beloved husband of 2 ½ years) was working late in Draper.  

As I was walking around my apartment, I noticed a bright spot in my vision like a lingering camera flash.  It didn’t go away but seemed to grow larger.  Then I saw some squiggly lines in the left side of my vision.  I had had a migraine in high school, and this was how it had started.  I expected a severe headache to follow that would be manageable with medicine.  I called my mom, who has migraines.  She arranged to give some medicine to Justin before he left Draper.  I started to have a hard time walking and balancing.  My dad called me and we had a pretty normal conversation as I lay down with a frozen water bottle under my neck to help with the stiffness.  After I hung up with him, my neck started feeling a lot stiffer and my head began hurting.  I began to feel very worried and sad, even though I kept telling myself it was nothing to be afraid of.  My sister Maddie was up in Sandy, but had her roommate in Provo bring some excedrin over to stem the pain.  I took the medicine and lay down.  Maddie told me that I was fine, so I tried to calm down.

I called Justin for some reassurance.   I started feeling more and more distress.  I continued feeling very sad and anxious  (I have come to realize that this intense anxiety and distress is one of the first signs of an episode.)  I tried to tell him how I was feeling, and it was hard to get my words out.  He calmly explained that he thought I was experiencing the same trouble my mom has with migraines when her words get jumbled.  At this point we still thought it was a migraine.   He was so kind and comforting and told me he was now driving on his way to me, but was stuck in a big traffic jam.  The big game changer was that as I was talking to him, my right hand and left hand started alternating going numb.  I described it to him as it was happening, and felt very afraid.  He told me that I needed to focus on my breathing, and I hadn’t even realized it, but I was hyperventilating.  It was extremely hard to breathe slowly.  Justin again told me that I needed to see a doctor. He was lovingly and firmly insisted, and sent our neighbor over to pick me up so we could meet him at the Instacare.  

When my friend from the ward came in, I was scared to realize that I did not recognize her face.  She is a dear, close friend, so this was very disturbing to me.  On the way to the Instacare, Justin called and said to meet him at the ER instead (he told the nurse at the Instacare my symptoms and she said we needed to go to the ER immediately).  When we got to the parking lot, Justin came up to our car.  I knew it was him, but again, I didn’t recognize his face at all.  Despite this, I was comforted by his presence and knew it would be alright.  

From here, it’s kind of a blur.  I remember being put in a wheelchair, having my vitals taken (which I had been practicing with patients at the hospital that day at work as a psych tech), and being put in a hospital room with a bed.  The nurse and Justin tried to help me lay back but this caused extreme pain in the back of my neck.  Instead I sat forward with my head in my hands.   It appeared that the focal point of my pain was the back of my neck.  I vomited multiple times which seemed to calm some of the nausea I was feeling.  The nurse put an IV in my arm, which caused extreme pain.  Normally I try to hold back screaming or crying with shots out of respect for those around me (and normally it doesn’t hurt that bad), but any energy to filter my emotions was completely spent and I screamed and begged them to take it out.  They told me it would help me relax and that that way they wouldn’t have to give me multiple shots.  Eventually it did relax me and I was able to lay on my side.  

A doctor came in and tried to get me to do a lot of tasks to test my motor control and see if it looked like I had had a stroke or tumor.  He touched both sides of my face and asked if I felt the touch equally on both sides.  He had me raise my eyebrows, grip his hands, push against his hands and lots of other things.  I was having a really hard time understanding what he said, and speaking back to him.  

I was wheeled to another room to do a CT scan.  I don’t remember much about it.   After the scan, I slept for what must have been a long time.  I remember the doctor coming in to talk to us.  He would ask me questions about things, and I would always say “Whatever Justin wants.”  I was barely coherent and still in pain, so I knew Justin should make the decisions for me.  I vaguely remember the doctor saying that from looking at the scan, they did find something.  They believed I had a Chiari Malformation.  He had never heard of it before, and said he would see what he could find out about it.  Justin probably asked him a lot of questions.   I was shocked that they had actually found something, but very relieved that there was a visible reason for what was happening to me.  By this time I had received medication from the IV that helped relieve some of the pain and I calmed down considerably.  My parents arrived and I was happy to see that I could recognize their faces.  The doctor came in and gave us some more information about Chiari Malformations.  

After this, the plan was for me to be discharged from the ER with an order for an MRI, and the name of a neurosurgeon we should see.  I was given a prescription for muscle relaxants to help me in the meantime.

Justin and my dad brought me home and my mom picked up my prescription for the muscle relaxants.  It was about midnight by this time so I went right to sleep when I got home.

This was a frightening experience, but through it all I did feel moments of peace.   I remember praying a lot during the whole thing and feeling like Heavenly Father was watching over me.  I was so grateful to my family, friends, the doctor and nurses for helping me through everything.   

In my next post I’ll talk about the weeks after this first episode and the doctor visits we had.