6 days in the hospital and I am home. What began in the Emergency room Tuesday afternoon ended Sunday afternoon at 3pm when I was discharged just around the same time the Chicago Bears won. My mental state of mind is like night and day from last Monday to this Monday. It is unbelievable how a drug can take over your mental state of mind. Honestly even reading several of my last posts that is so not me. My seizure drugs messed with my brain big time. I never imagined a drug could have that powerful of a side effect to turn a passionate, determined, outgoing, energetic woman who has accomplished so much to a depressed, unmotivated, suicidal person. I am not going to repeat everything that lead up to being hospitalized at Chicago’s Rush Hospital you can read that in my last post that I wrote from the hospital.
It felt like the longest week of my life that seemed to never end. It doesn’t help when my brain was hooked up to 25 wires for 3 days and I had to stay in bed at all times unless I had to use the bathroom in which I had to bring with me several cords and a black case that carried all the cords.
After three days of recording brain waves they did see epileptic activity (spiking and firing in the brain) but recorded no actual seizures. I was informed I could have seizures without even knowing it there are different kinds of seizures and the two I have had in my life have been full grand mal seizures that have me in pain for days because of every muscle being shaken. Like I described in an earlier post you don’t even want to get out of bed for days because your body is in so much pain. So the good news was they did not see any actual seizures while I was hooked up to the EEG wires. The doctors lowered my Keppra (the drug that made me suicidal) to 1500 a day dropping it 1000mgs. I was at 1500 a few months ago and was in a good state of mind. 2500 was too powerful for my tiny body. My doctor has continued to increase it every time I had an aura the past 6 months. His goal is to get me completely off Keppra but it will take time to slowly continue to lower it.
Tuesday night my sister spent the night in the hospital with me, Wednesday day while I slept a lot in the morning my sister received two text messages. One from our cousin in Texas asking my room number at the hospital and my ex-boyfriend (Mature Ryan he doesn’t like me calling him older Ryan) asking the same thing. While I was still sleeping flowers arrived to my room and I woke up to beautiful flowers from my cousin Caitlin in Texas. Shortly there after I was talking to my mom and sister and suddenly at my hospital room door is my ex-boyfriend Ryan who drove down from Wisconsin. He figured by his text to my sister she knew that meant he was coming to see me. My sister took that as he was sending something. I guess he sent himself. I was shocked to see him and embarrassed by the way I looked. Him and I have stayed good friends since we broke up last December. My doctor came into my hospital room shortly after Ryan arrived to describe Lyrica to me. The first words out of his mouth about side effects were “weight gain”. Before I could even say anything Ryan said, “Put her on it.” He got on my case last month about getting too skinny I kept telling him I eat it is the increase in my medication that is doing it to me. When Ryan said “Put her on it.” I said, “Your not my husband or father you have no say in this don’t listen to him.” He said he was sorry and stepped back as I looked at my doctor and his nurse that works for him whom I know very well and said, “I don’t want to be put on a drug that ends up making me gain a bunch of weight.” He explained that he tells all his patients he puts on Lyrica to diet and workout. I looked at my doctor with my sister, mom, and ex-boyfriend all listening in and said, “You don’t understand I can’t put myself on diets. You know I suffered for 3 1/2 years with anorexia and if you get me dieting it will turn into obsessing over what I am eating, restricted eating, weighing myself everyday, and will eventually have a problem I never want to battle again in my life because it was so hard to get out of something I got myself out of without any treatment. So my doctor said, “Erin what is the most you will allow yourself to weigh.” He then said not everyone gains weight on this it is just one of the more common side effects. He shared more side effects including the same side effect Keppra gave me “suicidal thoughts or attenpts.” he explained that this past summer the FDA had to add the suicidal warning on to several seizure drugs. Just check out a few of these articles and you will see what I learned after I became suicidal on Keppra. Study finds New York Times. My doctor is starting me on a very low dose of Lyrica. He did have me at 100mgs a day but he lowered it three days later on Saturday in the hospital to 50mgs a day and he will slowly go up. I was upset about the side effects this new drug can cause and my doctor said, “Erin you are in control here we work as a team.” I sure wasn’t feeling in control I felt like everything is in the hands of the doctors. Ryan heard about all the 4 really bad panic attacks I have had since April and told me how he used to get really bad migraines and what helped his go away was meditating and it is something I should try doing when I feel any weird aura come on or anxiety. He is a good ex-boyfriend minus breaking my heart last year. Keppra has the risk as I described in my 2nd book to increase anxiety.
Wednesday I was still feeling very tired, unmotivated, depressed, etc. My doctor and his nurse even said, “Erin you are not the outgoing, bright eyed woman we have seen in our office.” He could even see the impact the drug Keppra had on me. He asked me if I have been having any suicidal thoughts I told him no. Then later in the day another neuro doctor came in to speak with me because I was about to get my first dose of L:yrica. He looks at me and says, “Have you been informed of the side effects Lyrica can cause?” I said. “A few can you go over all of them with me?” First words out of his mouth “weight gain”. I was hoping he would start with something else but he had to say those words. For somebody like myself who has had control taken from her throughout her life through the abuse I endured, to going down destructive paths searching for control through self-injury and anorexia, and had no idea what was coming. Epilepsy which it can now be called since I have had two seizures. It completely takes control over me. If I have a seizure I have no control over the situation. And to top it off I end up on a drug that after being raised to such a high dosage took control of my thought process and turned the lights off inside me and made me suicidal. What is even worse is knowing the drugs were doing this and saying out loud to my mother a week ago today, “I am ready to go jump off a bridge.” And I wasn’t being funny I was serious and my mother could see it in my eyes. That is when she said, “I would rather see you having seizures right now then see you like this because she has never seen me like that before and I kept saying “Mom this isn’t me it’s the drugs doing it I need to get off the ASAP before I act on these crazy thoughts I am having. Doctors tried telling me in the hospital it might not be the drug Keppra that did this to you, it might have been when you had the seizure the shaking in your head caused a shift in your mood to being very depressed, suicidal, etc. While they may be doctors and have gone to school for a very long time. Nobody and I mean nobody knows their body better then the person themself. I knew this had nothing to do with the seizure and had everything to do with the drug Keppra. I am a very aware person especially when it comes to my body and how I am feeling physically and mentally.
I am my happy, passionate, outgoing, motivated, determined, self again. Within days in the hospital of lowering the Keppra I found myself again. The darkness soon turned to fog and the fog soon turned to the light going back on. Unfortunately once my mental state of mind started to feel good again I began having physical chest pains in the center of my chest that started Thursday morning. It got so bad I could no longer eat or drink. Not even water. It was like someone stabbing me in the middle of the chest once water or food hit that area. I didn’t have any sore throats, or shooting pain. It was just a terrible awful stabbing pain in the center of my chest. When doctors heard I couldn’t even eat or drink they began treating me for acid reflux which I have never had in my life, I have never had any type of chest pain in my life. Over the course of Thursday to Sunday I under went an EKG on my heart, hooked up to a heart monitor, chest x-ray, given stuff for acid reflux but after 5 medicines in one day and still unable to eat my mother and doctors began to wonder if this was something else because that many drugs would of done something. Eventually they brought in GI stomach doctors because the neuro doctors didn’t know what else to do and I was going on 2 days of not eating. My mother joked on Friday saying well you didn’t want to gain weight on Lyrica you got your wish. I did find that funny. After speaking to me a bunch the GI doctors felt on Sunday that the pain was in my Esophagus and they believed that I was taking so many pills one of the pills got stuck in the Esophagus which is why it has become so painful to eat or even drink anything. They began giving me medicine to numb my Esophagus so that I could at least get some food down with less pain and placed me on two other medicines. I was told Sunday that I am suppose to follow up in a week with the GI doctors and if the pain has not gone away they will do an x-ray of my Esophagus and take a camera down.
When doctors came in Sunday to see if I am ready to leave I said “Get me out of here.” The doctor working Sunday on the neuro floor that I saw a lot throughout the week did a bunch of tests to see my strength in my legs, arms, vision, ability to walk, asking how my mood was and if I was having any suicidal thoughts, and then made me walk up and down the hallway, balance on my tippy toes and heals, and then said, “Are you sure you are ready to leave Erin.” “Yes I can manage this at home I told him.” I’d rather be in the comfort of my own home then being woken up to take my blood pressure, temp, and pulse or hearing over the intercome EEG 325, EEG 340, everytime someone feels like they are going to have a seizure they push their red button and it announce over the hallway intercoms EEG and their room number.
Through most of my time at Rush hospital I saw a psychiatrist every morning he woke me asking me questions about my mood, what day it was, where was I, do I have any thoughts of hurting myself, what is 100-7 which I got wrong I said 92 and it is 93. Somethings never change. He told me and my mother on Thursday that I really need to follow up with psychiatric care and therapy when I am discharged and do I want to see someone at Rush or someone back home. I just kept telling him what he wanted to hear. Yep okay, sure, uh huh, I just couldn’t believe I had to be asked all the questions I was being asked especially when being lowered began to make my mind clear again and I was like I don’t need to speak to all these psych people. I gave the psychiatrist a nickname on the first day and called him Mr. Quacky. The 2nd morning he wakes me out of a deep sleep and says “How is your mood? How do you feel?” “What are your interests?” I am thinking how do you think I feel you just woke me out of a deep sleep. I am tired, I am interested in going back to sleep. A family memeber had to be in my room staying with me overnight my doctor and the psych said so because of the way I came in.
My sister got to experience Mr. Quacky a lot and I think that was the highlight of her day she found him funny and the questions he asked me were so random. Well on Thursday night I had three friends come and visit. One of those friends brought coloring books, gossip magazines, and a reindeer that grows in water. While my mom and sister went and grabbed dinner in Chicago to get out of the hospital my friend and I talked. She filled a container with water and put the reindeer in it. When my mom and sister came back they were laughing and of course my sister loved it because she starts celebrating Christmas two months before Christmas. I said “Great Mr. Quacky is really going to think I am nuts now.” That leads to Friday morning. Mr. Quacky comes in and asks how I am feeling and if I still have the same interests. I told him well I am on facebook and that is one of my interests. He tells me he is not on facebook and I told him how much he is missing out…..lets just say he got to see the usual me laughing, smiling, in good spirits despite the chest pain, and making jokes with him. For the past two days he has been saying I need psychiatric follow up care and Friday morning after hearing me he says, “I don’t think you need psychiatric follow up care” With that my sister goes, “Well she is growing a reindeer in water behind you.” He turns around and looks at it and then looks at me and says, “On that note I think it is time to take you to the 4th floor (Psych unit). All three of us were laughing. As he was walking out I said, “I really think you need to consider facebook you will discover how much you are really missing out.” I had him laughing as he left my room.
By Sunday morning I was so ready to go home. Thank goodness the rooms are private rooms. That was the one nice thing. No stranger sleeping next to you with a curtain dividing you. After watching the Chicago bears win a nurse came in with all my discharge paperwork which included 7 prescriptions. The nurse and doctor asked if I need a wheelchair to my car. I said, “I can run out of this place.”
It was nice to come home Sunday night and hold my 20lb orange cat, and sleep in my own bed even though I woke up a few times with chest pain but it is getting more tolerable. I can get soft foods down, lots of yogurt, and can drink liquids now which I am mainly sticking to water. I am taking it easy and asking for your continue prayers that these new seizure drugs work and I don’t get any of the side effects from it. I can honestly say the past two weeks were right up there with the darkest weeks I have ever had in my life. You just never know what life will throw at you. I am still learning to accept I have Epilepsy. Much like I describe in the beginning of my fist book and second there was so much shame associated with sexual abuse survivors. Well there is a lot of shame and stigma associated with Epilepsy and any seizure condition as well. For the past nearly 3 years I have gone into denial about having any seizure condition. I didn’t want to acknowledge it, just wanted to pretend it never happened, and really felt I would never have a seizure again after the one I had in January 2008. There is too much fear and anxiety that comes up when I allow myself to go there making me realize this week For nearly the past 3 years I have just wanted to dissociate that I have this. Sexual abuse has always been apart of my life and I learned to get over that shame and stigma, Epilepsy is all so new to me and there is so much there I just don’t want to deal with but I know how unhealthy that is. People will notice I talk about the seizure I had in my 2nd book but I never mention in any speech I give about having Epilepsy. I am honestly not comfortable with it. I’d rather walk around with a shirt that says I was sexually abused then one that says I have Epilepsy. Goes to show I have done so much work in my life with the issues of sexual abuse and how much I need to learn to do more then just accept I have Epilepsy. As I say in my 2nd book Living For Today I take one day at a time and I know whatever door God opens in my life he will be there walking right along side me. Helping me with my struggles, decisions, mission, and purpose He has for me.
I’m back though….and ready to continue my mission. Really positive news to come that I will post within the next 24 hours since this post has gone on way too long.
Flowers my cousin sent me
Talking to Ryan who came to visit on Wednesday as I am hooked up to a bunch or wires.
The food I couldn’t eat and me coloring ( the inner child in me coming out…or maybe just going out my mind and trying to pass time). I think the last time I colored I was at Rush 2 1/2 years ago for only 1 night. See all the wires attached to my head. Notice I won’t look at the camera.
The reindeer that never grew after 4 days in water and it is suppose to start growing in 2.