2 weeks ago today I was waking up in a hotel room on the ocean in Ocean City Maryland about to give a keynote speech at a state conference on child abuse. I was feeling alive, passionate, determined, and happy.
I never imagined 2 weeks later I would be writing this from a hospital bed in Chicago where I was admitted yesterday after spending 7 hours in the ER when my doctor ordered me to get down to Rush hospital. Two days after I returned from Maryland I had a grand mal seizure in my sleep. The second one I had in my life the first I had nearly 3 years ago. My doctor who had just increased my medication a month earlier due to auras I was getting increased again. 6 months ago I was at 500mgs of Keppra I was over the past 6 months increased to 2500mgs. I was always warned about anxiety as a side effect from Keppra but never about the side effect I would end up getting.
Suddenly all the passion, energy, motivation, determined, courage, and strength I had was gone. I woke up not even wanting to get out of bed, become completely unmotivated and no energy to even get out of my pajamas. Several days last week I stayed in my pajamas all day, took long naps, and sometimes just sat there staring out the window feeling completely empty like I had left my own body. I became very tired and only thought about sleeping and often never leaving the house last week not even to go out and vote. It felt like the light switch in my life had been turned off and it only got worse and I knew it was all side effects from the drugs I was on since it was increased to such a high dose.
I am finally saying what I have been going around in other posts. The words I finally turned to my mother and said Monday night shortly after my last post. Words she has never heard me say to her. I have been fighting off suicidal thoughts. I can’t believe I am even typing those words. I never for a moment would think I would be writing about this. This is so NOT me. Yes I was like that in high school but I haven’t felt this way in over 7 years. I am someone everyone knows for having so much love for life, passion, determination, strength, and courage. Someone who normally wakes up every morning thanking God for the sun and how I am going to make a difference today.
Suddenly all those wonderful feelings that fill me with so much passion are gone and my mind is thinking of wanting to die and how I at 25 years old have accomplished a lifetime and my legacy would live on through my words in my books and law. It is horrible thoughts like this that suddenly began consuming me last week and only got worse into the weekend.
Now let me explain something it is one thing to be suicidal it is another thing to be suicidal and no how wrong these thoughts are yet you can’t make them stop because a side effect of a drug you keep putting in your body to prevent seizures is causing you thoughts of ending your life. It only makes me feel like I am going out of my mind because I know how wrong it is to feel this way. I am the one who spent all last year into April working at a counseling agency and part of my job was doing homicidal and suicidal crisis assessments and sending people I felt a danger to themselves to the hospital.
Never in a million years would I ever think I would be having these thoughts at this time in my life let alone be breaking down balling my eyes out to my mother Monday night saying this isn’t me I want to kill myself we know this is not me. My mother made me immediately call my epilepsy doctor I’ve been seeing for nearly 3 years. I called his after hours and told him how I was feeling the side effects of the drugs like depression, anxiety, empty, no motivation, and with that my mother is standing next to me and saying tell him everything you told me. I finally said “so dark I am having suicidal thoughts.” Again I can’t believe I am saying those words “suicidal thoughts”. He made sure I had no plan, he lowered my keppra to 2000mgs instead of 2500mgs and told me if I have any thoughts at anytime throughout the night to act on my thoughts to call him. He said he would call me the next morning at 11am.
That leads to Monday. My parents whom I still live with went to work, my sister went to Chicago for jury duty, and I got up hoping those empty feelings would be gone and would start to see the light turned back on. Instead I found myself unmotivated and often sitting in the dining room and just staring out the window in deep thought. At 11:30am my phone went off it was a family friend who I have known since I was 2 years old that works for my doctor calling. I thought she was calling for him but she was really calling me having no idea I had a seizure 12 days ago or the side effects I was having but instead to see if she could get me to speak in May for their event. She immediately said “Erin it doesn’t sound like you at all.” The tone in my voice that is often so outgoing and energized was gone. I filled her in and she was really concerned. Shortly after my doctor called me and we discussed more of the side effects and he finally said Erin I need you to get to the ER here at Rush and I would feel better if someone took you here and you not take yourself. He said your not going to like this but we need to get to the bottom of this and need to get you admitted and you will be here at least two days if not longer. He called back our long time family friend Nancy who was kind enough to come pick me up and take me to Chicago where we spent the next several hours waiting in the ER. Oh the things you see in the ER in Chicago. Finally got in and spent a total of 7 hours in the ER and had to get a psych evaluation from a young Med student where I had to answer every question you could imagine about my childhood, teenage years, past depression, suicide attempt at 16, self-injury in high school, and current suicidal thoughts. I looked at this medical student from the psych unit and said “Some of the same questions your asking me I was asking students in my profession when I did threat assessments and never imagined I would ever be asked these questions…it’s not me it’s the drugs.” I went on to explain to him if he new me outside my current state of mind I am a super passionate, determined woman ready to change the world that just appeared on Oprah and getting a law passed. He kept saying for all the trauma I have endured and medical problems I sure have accomplished a lot in my life. He then kept going back to how did I overcome anorexia that I struggled through 3 1/2 years of undergrad from. He was surprised I got no treatment for anorexia and kept saying how did you get out of your eating disorder. I explained to him that I fell into the eating disorder because I never had control in my childhood and it gave me control. When I had the seizure I lost all control of my life and realized I needed to give up wanting control and give it to God. So it snapped me out of it and I went from 92lbs to 109lbs. Over the past month since my doctor has increased my medication a lot I have dropped down to 102lbs. I even explained to my doctor I don’t eat like I used to. I still eat 3 meals a day but get full much quicker and much smaller portions and it has nothing to do with control food intake or counting calories. I haven’t counted a calorie in 2 1/2 years. After the psych eval more lab work was done and then they brought me dinner in the ER and a lovely dark piece of chocolate cake. We all know much does not trigger me from my past these days but chocolate cake does. Just the look of it makes my stomach sick.
Eventually an actual psychiatrist came and asked me a bunch more questions with the medical student standing behind her. I eventually told them I don’t plan to act on my suicidal thoughts and had to promise that at anytime I was feeling them I would tell somebody immediately on my hospital floor since I wouldn’t be on the psych unit but would be having someone checking on me from there. I looked at her and said I can’t even believe I am having this conversation with both of you….I wish you both knew the real me who is full of so much energy and life. But yes I promise if this empty, sad, depressing feeling makes me start having anymore suicidal thoughts I will tell someone the same way I told my mother. They did say that a family member has to stay with me at all times staying the night at the hospital and that I can’t be alone for my own safety.
Finally after 7 hours in the ER I was brought up to the neuro floor of the hospital where I eventually said goodbye to my parents and my sister stayed. My Dad came over to my bed before leaving and began hugging me. “Erin the world needs you don’t forget that.” I hugged him back and said “Dad this isn’t me it is the drugs doing it to me, I want the light switch to go back on and go back to saving this world instead of saving myself, but don’t worry about me.”
The next hour was spent me being hooked up to 25 wires an EEG recording my brain activity looking for spiking and firing in the brain and then starting to lower my dosage very slowly of Keppra last night and this morning. I went to bed at 1am and woke up at 4am. I got little sleep so uncomfortable with all these wires and IV needle coming out of my arm. And I just have issues sleeping in hospitals it reminds me of being 7 years old after putting my hand through the window and staying the night in a hospital.
At 6am a man enters my room and says he I am a psychiatrist do you mind if I ask you a few questions. I was thinking to myself “Why are you in here so early I just want to sleep which all I was doing is tossing and turning.” He then starts asking me about depression, my past, suicidal thoughts, and then says “Who is our current President? What day is it? Repeat the three words I am giving you, do you hear voices, then goes back what were the three words I told you to repeat, what is 100-7 and I say 92. It wasn’t until after he left I look at my sister and say why was he asking me the most random questions and making me do math at 6am. I said wait 100-7 that isn’t 92 it is 93. My sister started laughing and said I didn’t even catch it I wonder if he did. I looked at her and said well one thing hasn’t change I still can’t do math. Then again he is asking me at 6am and I have a lot of other things on my mind than what 100-7 is. He informed me he thinks it best if I see a psychiatrist after I leave the hospital in a few days. Running through my head is I don’t need to see a psychiatrist the seizure drugs are making me suicidal it isn’t my regular way of thinking. I even told them during the psych eval that the reason I have not allowed myself to act on these suicidal thoughts is because I convinced myself once they get me off these drugs I will be my happy motivated self again. I said what is scaring me is not getting off them quick enough and these thoughts only getting darker and more frequent. Someone from the psych unit will be coming to talk to me again today. Hopefully there will be no more math questions
I am laying in my hospital bed an hour after the psychiatrist came in the room since I am not allowed to be up and walking around and that is pretty much impossible attached to all these wires and a nurse comes in to take my vital signs and we have Good Morning America playing on the TV and suddenly a story comes on saying “Reality TV stars who have committed suicide.” The nurse looks at my sister and I and says “I just don’t get people that would want to kill themselves like seriously how can life be that bad and who would have the balls to actually kill themselves. I sure couldn’t even think of doing something like that to myself.” I couldn’t even look at my sister because I know the same thing was going through her mind as what was going through mind. All I am thinking is lady you have no idea who you are talking to and the other nurses I have dealt with all knew the side effects I was having from my seizure medication. I finally turned to her and said, “Well sometimes people don’t have control when a side effect to a drug starts making them think about ending their life.”
When she walked out my sister just looked at me and said “I can’t believe she said that.” I said watch her go read my chart now and see the reasons of why I was admitted.”
Now I am waiting to actually see my doctor who I have not seen yet who is suppose to come in this morning and tell me the new drug they will be placing me on and monitoring to see if the change causes seizures and if my side effects change. There is so much fear there that I am not even allowing myself to think about. The thoughts of having more seizures, side effects, will this drug work, how will my body respond, will the light switch turn back on.
All I ask is all you prayer warriors and those who have told me over the years what an inspiration I was or asked for my advice to please send nothing but positive thoughts my way (pray for no seizures, dark thoughts, and this new drug to do the trick) because as I shared in this post I am in the darkest place in my life since high school and I have nothing to do with it or much control over the situation. I never asked for any of this much like many of the events in my life. The events of how things play out will determine how long I am here. I am ready to go back to bed and since I am in one I am going to.
Thank you for all your prayers.