If you are expecting one of my uplifting posts your not going to get that reading this.
I’m not perfect and I am human just like everyone else.
This post is not about my books, Erin’s law, or the next place I am traveling to. It is on a topic I touch on in my 2nd book “Living For Today”.
On January 12th, 2008 nearly 3 years ago I was driving and had a seizure at the wheel. I ended up being sent to heart doctors, neurologists, and spending time overnight at Rush hospital in Chicago. I had heart monitor hooked up to me, heart scans, EEG’s of my brain, MRI’s of my brain, and the end result being a discovery in my brain of scar tissue that caused the seizure at the wheel.
So much at that time in my life was out of my control. So much fear consumed me not knowing if it would happen again. So much of my independence was taken from me and I was relying all my family for everything including driving which I was not allowed to do. I don’t even want to tell you how dark my life got but I went to some very dark places from January-April 2008.
I was put on medication warned of all the birth defects it could have on an unborn baby and the increase in anxiety the medication causes. I tried a bunch of medication. One gave me terrible headaches another kept me in bed for an entire week because it made me so dizzy I couldn’t stand up. It was awful and those 4 months are 4 months I didn’t know if I had it in me to keep going.
My doctor told me he felt after 2 years I should be able to go off the seizure medication and that he would check again with another EEG in 2 years. For over two years I was completely fine. In March 2010 I was hooked up at home to a 48 hour EEG. 24 wires attached to my head recording brain activity. Hoping I would be able to go off the medication.
The opposite happened the results came back with a lot of spiking and firing in my brain. My doctor ordered another closed MRI at Rush hospital that I had done in May. In April I started having aura’s which is the feeling I had right before I had the seizure 2 years earlier. The feeling many who suffer from seizures get. A feeling that comes over them before they go into a seizure. My medication went from the smallest dosage of 500mgs to being increased to 750mgs, then 1000mgs, then 1500mgs, then 1750mgs, and currently as of a month ago was placed to 2000mgs all because of the aura’s I have been getting that I am about to have a seizure but it never goes into a seizure or this awful sensation that just started happening in June where these electrical activity in my brain that shoots down my entire right side of my body from the arms all the way down to the tips of my toes.
The worst part of these aura’s is it has been sending me into horrible panic attacks that last an hour. The worst panic attacks I have ever had in my life. Nothing can calm me down until my doctor put me on anxiety medication. It is a terrifying feeling I can’t even explain. There is so much fear of having a seizure and not being in control and how much control of my life I lost when I had the first seizure nearly 3 years ago.
So my doctor sits me down in June with my mother and tells us he had a top specialist look at my MRI and they couldn’t believe what they were seeing. His words exactly to us “A portion of your left brain is GONE” He later described it as insefulitics I got as a newborn baby that ate away that portion of my brain. He said the area of my brain that stores memories, language, and speech is gone. He said I am a miracle baby and if this happened when I was an adult I would be unable to communicate but that because it happened as an infant my brain was able to rewire itself to the right side of my brain and teach myself how to speak and hold memories. The doctor said the miracle in it all is how I am gifted in the area of speech and that I went on to write books. He said I need to be written about in medical journals because it is so unheard of to see this. Unfortunately I remember too much. As my mother described to him that a complete stranger can tell me their birthday and I won’t forget. The negative to remembering so much is so many detailed painful memories I cannot forget from my childhood that are so fresh. This same area of my brain that is affected from this is the reason I have never been able to smell. It is right in the area of my sense of smell.
Well that leads to Friday night. I went to a Halloween party. Had a great time and returned home at 2am. My younger sister came home shortly after me. I eventually fell asleep. My sister shortly there after heard strange noises coming from my bedroom. She first thought it was my cat throwing up then she realized wait I think that is Erin. She ran into my room to see my entire face twitching and foaming at the corner of my mouth. she tried taking my hands to pull me out of it and then my eyes rolled behind my head and she freaked out and ran and woke my parents. My Dad got to my room first and sat me up just as I was coming out of the seizure that seemed to them to last 30 seconds. I have no memory of any of it. I never remember my sister or Dad being in my room but when I finally did come to I went into a full panic attack and was so confused and didn’t know what was going on. My mother was saying things that made no sense to me but I didn’t want her to leave my side. There is only one thing these days that snaps me out these horrible panic attacks and it is a hot bath. So at 3am I was in the bathtub.
I am so afraid to be left alone after having one of these panic attacks. Thank God I don’t live alone because I can’t imagine what I would do by myself. It scares me to even think of that. Not only is there fear, confusion, and anxiety that comes after a seizure there is horrible physical pain. Every single muscle in my body has been worked and while yesterday I did not feel the pain it was today that all my muscles are sore. Just the tiniest move of my legs, arms, stomach, back, etc. brings extreme pain because all my muscles have been put to work and I seriously feel like my entire body is bruised. It is easier to just want to stay in bed and not get up.
I contacted my doctor yesterday who is going to talk to me tomorrow. I fear what he is going to say to me. I hope he doesn’t make my world dark and we can get to the bottom of this. The last I spoke to him he told me he will only allow me to go up 500 more mgs. of this medication because I am already at a high dosage and the side effects of anxiety, depression, tiredness, increase each time he increases my dosage and because of my weight it would be risky to go any higher.
I cannot even describe the physically and emotional pain I am feeling right now. The fear that has consumed me. It is like walking on egg shells not knowing if I am going to go from feeling completely normal to suddenly having an aura that can send me into a seizure. I don’t want to live a life like this. You cannot even imagine unless you suffer from seizures how awful it truly is and how much extreme pain your body is in after a seizure. I seriously feel like someone beat the crap out of me.
All I do is pray out to God. Praying he will heal me from this. Hear the fear and anxiety I carry from this. I cannot continue this ministry I feel he has called me with this medical condition taunting me and taking over my life. I’ve stayed pretty quiet about it since March but the toll it is starting to take now is consuming me. The physical and emotional toll is overwhelming. God heal this brain of mine. I need your strength to wash over me and your healing hands upon me. God you are the only one that truly understands how I am feeling and the toll this is taking on me. Please take this from me and allow me to feel you comforting me. No words can describe how scaried I really am and God only you know what is on my heart and what I am thinking. I’m leaving it in your hands praying you will come through like you have through the other trials in my life.
God I know you hear me please place your healing hands on me and lead me out of this darkness. I need you and I am crying out to you.