Posts Tagged ‘Neurocardiogenic syncop’

ImageA note from Mik’s Mom:  Above is a picture collage for a prayer journal I created years ago.  When I came across this recently, I realized how much this collage now reminds me of Mikaela’s journey.  Especially the smiling through adversity pic.  Also, the gift pic – she has a gift that she needs to share with others.  The gift is her Dysautonomia Journey.

In Mik’s Words:  

Strength is not something someone is necessarily born with and wisdom is not an inherited trait either. I believe these are acquired through life experiences – both positive and negative.  Everyone has to start somewhere. Through times of trial, people can suffer, but they learn how to cope and endure.   And from those experiences is when people develop their mental strength and wisdom.

Like many of us diagnosed with Dysautonomia, I have been through a journey that builds those two very important things: strength and wisdom. And I’ll admit, I’m still coming to terms with everything I have been through.  I know I still have more learning and growing to do. However, I have come very far from where I started.

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Me and my cake mentor & friend – Tammy

Before my new life and journey began, I felt very much in control of my life and had very direct dreams and goals for my future.  I was lucky that at just 13 years old, I found my passion and talent for cake decorating and was lucky enough to have one of the best decorators in my area, who has become one of my most devoted friends, agree to teach me about cake sculpting and decorating.  She instructed me for 2 years and I planned on going from apprentice to employee when I turned 16.  After college, I planned on opening up my own bakery.

Also, like many teenagers, my head was up in the clouds with “school drama” and was a bit boy crazy.  I was also incredibly naive and would trust anyone. As far as religion goes, I always considered myself a Christian.  But looking back now, I realize I was somewhat of a “on the surface” Christian.  I did the usual, went to church, said prayers and called it a day. I did not like to read into the whole “God thing” too much because at the time it scared me to give up my control and I liked to live life by my own terms. The only time I ran to God was when I was in a situation where I was sad or upset…. or when I wanted to make a good grade on a test.  I knew that God was there, but I never put any effort to have a true relationship with Him nor did I ever fully surrender myself to Him.

When my freshman year of high school came, it was one of the best times of my life. I had a big group of friends old and new, was involved in so many activities and was just plain enjoying the new experiences high school brings. Ironically, homecoming was the one thing I was looking forward to the most. I enjoyed getting ready for the dance, taking pictures with my friends, and then being a total goof on the dance floor. I danced my heart out that night and didn’t care who was watching, I was too busy laughing and having fun.  About an hour into the dance was when “Hips Don’t Lie” by Shakira came over the speakers and I went crazy because it was one of my favorite songs. Throughout the night I was having a pain in my side, but I wrote it off as a muscle cramp from all of the dancing I was doing, but it increased to where I stopped halfway through the song and clutched my side because the pain was building rapidly all of a sudden. My friends asked if I was okay and I said I was.   I thought it would just go away and I could continue. But that was when the pain abruptly stopped and I felt extremely “weird” and fell forward and collapsed into one of my best friend’s arms.

That was the start of my new beginning.  My health, my future plans, my high school experience – everything went downhill from there.

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The terrific team of nurses in the PACU who took care of me during all my extensive testing.

Just a few days later I was in the hospital after having many fainting episodes since that night at the homecoming dance. I could not stand up for more than a minute and was extremely weak.  Walking was no longer an option.  Terrible dizziness and indescribable brain fog became the norm for me, too.  Just attempting to get out of the bed felt like I ran a marathon.  My physical abilities to be independent dissolved, but my mental wish for independence remained and frustration became a new normal emotion for me.

I could not comprehend how my life could change so quickly and became frightened. I was terrified of hospitals and scared on what was happening to me. The first night I spent at the hospital was when I turned to God and prayed with all my might. I prayed for this nightmare that at the time seemed to rob me of my independent future to be done and over with.

A week later, which happened to be the day after Halloween, was when I was diagnosed with a Dysautonomia illness called Neurocardiogenic Syncope Syndrome after undergoing the tilt table test. I was incredibly lucky to be diagnosed so quickly (some people wait years for a diagnosis) and I was relieved to have a name to what was causing my symptoms. I also naively thought that since I had a diagnosis, everything would go back to the way that it was.

However, despite my diagnosis and starting on a new medicine regimen, life did not go back to “normal”.   I still could not walk and was passing out up to ten times a day. I tried to go back to school in a wheelchair, but even sitting up was difficult.  I couldn’t even make it through the first day back. So for weeks I was tucked away in my room, very weak and unable to do things that I used to.  I even had difficulties feeding myself because my arms were so weak.  Despite my best efforts to remain positive, I fell into a deep depression. I felt like I was slowly losing everything I had and what I deemed important.

And I did.

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Me and my best friends Britt and Erin. They put up with my crazy world ; )

As to be expected from someone who is absent for most of their freshman year, friends in my life started to move on.   Some were really sweet and surprised me for my birthday and I appreciated that more than I can ever express.

My two best friends were always there for me.  However, with daily life and friendship interaction gone because of my illness and since most days it was close to impossible for me to stay awake, I felt like I was on my own little island with no way to get off. 

It seemed some acquaintances could not understand my limitations and it was easier for them to avoid the situation all together.  Though I can not really blame them because the phrase “out of sight out of mind” really does ring true, I could not help being very hurt from what I viewed as desertion.  Seeing them live a “normal” teenage life on Facebook was difficult at first.  If only I could explain to all of them what a blessing it is to have “normal” teenage life.  I know before my illness I never stopped to think how blessed I was that my legs worked, my heart would not race just because I stood up, breathing was easy, chest pain was nonexistent and picking my head off my pillow would not cause the dizziness to creep in to start my day.

Besides now truly appreciating what each of those physical abilities meant to someone who is ill, what my new journey made me realize was I was finally able to see the “perfect” life I thought I had never truly “perfect.”  I lost the comfort of having security and normalcy.  Despite my several attempts to try to go back to school and working with some of the most helpful school staff you could ever ask for, I had to go on homebound from school for the rest of my freshman year. 

To add to my sadness, I wasn’t able to work with my cake mentor anymore because of my continued debilitating weakness and frequent fainting.  I missed learning from her on a weekly basis and our everyday working conversations.  She treated me as an equal and gave me responsibilities.  Though she is now like family and been by my side during this journey, I miss the independence in the work that she trusted me to complete.  Also, after being in the orchestra since 6th grade, I couldn’t play my violin that I loved so much anymore because the act of holding my arms up to play was challenging in itself.

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It was one thing after another, small and large.  All the “can nots” in my world snowballed and seemed to steam roll over the few things that I could do.  It seemed like everything I held important started to slowly fade away and disappear. The mental pain of Dysautonomia was so much worse to me than the most severe physical symptoms.  It broke me down until I was just a shell. I didn’t know what my purpose was.  My identity I created through school and my hobbies was gone.  I didn’t even know how I could even possibly make it through the grief.  After initially trying to “bargain” with God to get me better and seeing that those prayers were going unanswered, I became very angry – angry at everyone and especially angry at God.  My reasoning was if He is such a loving God, why was He letting so many bad things happen?  I turned my back on Him, stopped praying and continued on with my misery.

A few weeks later, I had a night that I will never forget and would change my life forever.  On that particular night, just about anything that could go wrong did.   My symptoms were extremely out of control.  I was in all over pain and felt miserable.  I also was feeling defeated emotionally because another “friend” was drifting away and said the old “it’s not you it’s me” things via text messages.  After receiving those messages, it broke my heart to realize I was losing yet another person in my life.

It was the straw that broke the camel’s back.

In a rare temper and soap opera worthy throwing rage, I threw my phone across the room.  (My phone is my lifeline!  I would never through it under normal circumstances!)   It was then that I felt like I was literally broken. I absolutely lost it.   I got out of my bed and stupidly started walking around and began to shout and throw anything  I could get my hands on across the room. My heart felt like it would explode from all of the hurt I felt. I could not understand why everything that had occurred was happening to me.

Not surprisingly, during my angry outburst, I collapsed.  Struggling, I managed to sit myself up and looked out my bedroom window.  I looked up at the sky as if I could see all the way to Heaven and look directly at God Himself.  I instantly felt foolish and ashamed.  I realized I kept on thinking that I could manage my life on my own terms, not God’s terms, and that I could make everything right.  Because I turned my back on God since He did not answer my prayers  like I expected him to and when I expected Him to, I felt like I was being scolded just sitting there.  It was as if my parents were looking down at me while saying with love and patience,  “I let you try it your way and see what happens?  I told you so”.

It was then that I realized that I couldn’t go on with the way that I was living because of my circumstances. I realized that I had to pick myself up, but could not do it on my own anymore.  I needed God and knew that He is still there despite of everything that was happening to me.  He was and is the answer and the light in the world of darkness I was living in. I knew life would not magically turn perfect because of my new revelation.  I realized it would take time to heal and grow…spiritually, mentally, and even physically. With all that in mind, I then specifically said out loud to God, “I give up! Please forgive me.  I surrender to you!”

Not exactly sure how to explain what followed after I said those words.  I can only say it felt as if His divine comfort surrounded me.  The crushing heartbreaking sadness and pain I felt before immediately vanished. I had an intense, but comforting feeling that I was forgiven and everything was going to be okay. I gave all my worries, my concerns, my illusion of control up to Him. That was the night I truly surrendered to God and gave my life to Him. I was broken and weak, but He will always build me back up and make me strong.

For the first time in a long time, I slept peacefully that night.

After that, life did not get better over night, of course, but I slowly started to get my bearings over the situation.  People, like myself, before my “revelation” often mistake that when they ask God for patience, strength, and to fix something in their lives, that He will simply just grant it. He doesn’t always grant prayers in our time frame.  Instead, He may allow opportunities where we can develop patience, circumstances to give us strength and a lesson to rebuild what is broken.

As the months went by I started to manage to pick up the broken pieces and I learned from my struggles. I had to quickly mature and I learned what is most important in life. I learned to appreciate everything , big or small, in my life. I learned to look at the world and everything about it in a different way.  I also learned not to judge people because you never know what may be hidden from sight; everyone has a story.  Everybody is fighting some type of invisible battle.

What is something we can all take from this?

If you know of anyone who has a serious illness, keep in contact with them.  It might feel awkward and you might not know what to say, but sometimes just a simple hello with a smile goes a long way to make their day.  Or a text telling them you are thinking about them.  Send them a card.  Be understanding if they are not up to an in-person visit, but let them know you care.  Regardless if they are able to return your messages promptly due to countless doctor visits, hospital stays, tests, etc., they do receive your messages and your concern helps them to get through their most difficult days.

10  Love one another with brotherly affection. Outdo one another in showing honor. 11 Do not be slothful in zeal, be fervent in spirit,[a] serve the Lord. 12  Rejoice in hope, be patient in tribulation, be constant in prayer. 13  Contribute to the needs of the saints and seek to show hospitality.  Romans 12 10:13

Dys Song of the Day:  This song brings me comfort and was a song I listened to continuously on the days when I felt broken. I couldn’t ask for a better song that described my journey with God than this.

“October” By Evanescence

I can’t run anymore,

I give myself to you,

I’m sorry,

I’m sorry,

In all my bitterness,

I ignored,

All that’s real and true,

All I need is you,

When night falls on me,

I’ll not close my eyes,

I’m too alive,

And you’re too strong,

I can’t lie anymore,

I fall down before you,

I’m sorry,

I’m sorry.

My only hope,

(All the times I’ve tried)

My only peace,

(To walk away from you)

My only joy,

My only strength,

(I fall into your abounding grace)

My only power,

My only life,

(And love is where I am)

My only love.

www.MiksHiddenHearts.org