Thursday, January 30, 2014

3 cheers to 10 years; my epilepsy story.

Looking back on the last 19 years of my life there are so many great memories. I have had a very full very blessed life that has made me the person I am today, however with all of the good also comes bad. When I was very young I got a series of high fevers and when I was 2 or 3 I had my first seizure followed shortly after by a few more and then a 5 day stay in the hospital. People may think I am crazy but I do remember bits and pieces of early childhood. The strangest little things stick in my mind and maybe they didn't happen but I am convince they are real. Anyways, I remember being in the hospital because I remember my grandma taking me to the play room once when I was feeling better, and being visited by the dogs that come to make the patients feel better. (I know the dog visit was real because I have pictures to prove it!).

 After that visit I didn't have any seizures for about 8 years. Then my brother found me seizing early in the morning while him and I and all our siblings plus a bunch of cousins slept in our grandmas front room. Vance just happened to wake up and find me that way. It was a blessing because I was lying on my back and could've easily choked while laying there. I was very lucky he woke up.

Since I was having a large seizure I don't remember leaving the house. However I did wake up at one point on the drive to the local hospital. I was lying down in the back seat of my grandmas car on my dads lap. I felt sick and SOOO tired. I saw my dad and assumed my mom was driving and then I must have had another seizure or fallen asleep because I don't remember entering the hospital. I do have a lot of memories of that hospital visit. I remember getting an MRI, being in a wheelchair and throwing up. I also remember apple juice being given to me and to this day I don't really like apple juice because I associate it with that hospital visit.

My next visit I remember very well. I remember waking up in the ambulance and being HORRIFIED. I still can't see an ambulance without remembering waking up in the ambulance and thinking "this is a nightmare". That visit was about 2 weeks. I remember being so frustrated because I was having so many seizures. My parents say I was having one every 20 minutes. In almost every seizure I was having I was incontinent (had no control on my bladder) and so I remember how often I had to change my clothes, my sheets, and my underwear. Eventually I did have to wear pullups and I was MORTIFIED by that. I couldn't be left alone, I had seizures whether I was awake or asleep, I had to have help taking a shower or walking places. I was in the 3rd grade and couldn't take care of myself it was horrible and I think that this time in my life was what made me want so badly to be self-dependent. I had so many people to take care of me but I didn't want to be a burden. I felt like that  a lot. I remember more little things about that hospital visit. My 2nd grade teacher and his kids came to visit me and brought me presents. My cheer squad and the football team we cheered for had their team party while I was in the hospital and they called me and yelled all together "get well soon" and "we love you" and other sweet things I was so happy to hear. Then our head football coach and his family (The Whitings who are still some of our closest friends) came and gave me my trophy and a few other things. I also remember my dad taking me to the play room, but most of the things in their were for little kids so we colored in some coloring books and I thought it was so funny. I'm glad I remember the happy parts of my stay because I do still remember the harder parts.

After this visit I had to stay home from school for another 2 weeks. Upon return to school (and for many years after) I had to have meetings with my teacher, the specials teachers, and other adults who would be around me at school to explain to them what it all meant and what they should do. I remember my mom having me explain it all to them and though I was probably not so happy about it at the time I am really glad she put it on me to be responsible for it all because it made me take ownership and made me more mature about what all was going on. The rest of the 3rd grade was a roller coaster. I remember how my medicine made me feel sad or mad, and how it changed my personality. The worst part of it all though was wearing pull-ups to school. It was something that bothered me for years and years afterwards. I didn't want ANYONE to know. It wasn't until a few years ago that I even started telling people about all of the "details" of what a seizure was. I was afraid for so long that people would make fun of me for peeing my pants. It was embarrassing and I was ashamed. But eventually I realized that I needed to stop being so embarrassed and own up to it and embrace it. Heck yeah I have epilepsy and heck yeah I am still awesome. Now I can even make jokes. My very favorite is when people joke and pretend to be having a seizure and I pipe in and say "you know, that is really offensive to me because I have epilepsy" very matter-of-factly. The expression on their face is so PRICELESS. Then I say "I'm totally messing with you, I do have epilepsy but we can totally joke about it". I love feeling confident enough to do that.

One year after my last seizure (9 years ago) my teacher invited all of the kids to come in and have lunch in the classroom with her (that was a cool thing to do back then) she then explained to everyone that it was my one year anniversary and that we were going to celebrate. She brought cookies for the whole class and we all ate lunch together. One year was such a big deal to all of us, we even had a party at my house and a lot of people came to celebrate with me.

I was blessed to have an incredible support system behind me my family, friends, teachers and administrators, my church leaders, my incredible neurologist, the amazing nurses and doctors who took care of me in the hospital and most of all my Heavenly Father. I was blessed throughout my struggles by people the Lord put into my life for obvious reasons.

I don't know what will happen in the future. Since we aren't completely sure of what triggers my seizures we aren't sure if and when they will come back. I can't say that I am completely confident that my seizures won't come back, to be honest when I go to places like lazer tag that have "those with epilepsy should not participate in this activity" warnings, I get a little nervous. However, all of my worries are accompanied by the feeling of readiness. We know what to do now, and we know how to deal with it. I live with the possibility of my seizures everyday but I don't fear them anymore.

If you would like to know more about epilepsy: ASK ME. Or go to: http://www.epilepsy.com/ for more information.
 
Love, The Cat Lady

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