Sunday, September 29, 2013

It's Like Losing Your Car Keys

     My mom has been telling me not to get my hopes up on this for the past few days, but apart of me feels like it's like looking for your lost car keys, they're always the last place you look, and this is the last thing to try and I'm hoping that this puts a stop to my episodes. 
    The neurologist gave me a prescription of Keppra on Tuesday and said to wait until after I had the halter monitor to start using it. So tomorrow is the day. We turned in the prescription today and I start taking it tomorrow morning. Keppra is an anti-seizure medication for complex-partial seizures. Even though the EEG came up negative for any crazy brain activity there's still a 3% chance that it is epilepsy and that this could work and well I'm running out of options. I've gotten to the end of my rope. I am so tired of this. I've been handling it fine, but it is KILLING me not to drive, and to constantly under my parents watch. I'm a senior this year, this isn't supposed to be the time when I have no freedoms that was ten years ago not now. I should know in three days to a week if this stuff is working and then go back to the neurologist in four weeks to reevaluate and see if I need to keep on it or if it's just not working at all. I don't know if anybody truly understands how badly I need this to work how devastated I will be if it doesn't. I know I shouldn't put to much on this, but I'm out of options I am going to lose my mind if I'm stuck with these for longer. It takes everything I have out of me. I have no more energy, no more happy smiles, it's killing me. Let's just say if this doesn't work I might have to start throwing things. 

Keep your head up and hope for the best,
Ellie <3 

Saturday, September 28, 2013

My First Night Out

     It sucks that I can't drive, because if I want to do anything I have to mooch a ride off of someone else and then they have to stay there because let's face it, I can't do anything alone. So I really wanted to go to laser tag because I haven't been in a while and everyone was starting to worry about me there. My best friend works there now and I felt really bad asking her to go on her day off, but she went with me. Last night was my first time away from my family in a really long time it was almost freeing. We went out for coffee with two of the guys that worked there. I've never had coffee before and I didn't realize that the drink I ordered had coffee so that just started the night off on a great foot. I've haven't been so comfortable with being me in a really long time. Yes, I did black out a few times and they asked questions, but it became just a background thing. By the end of the night the two guys became so protective of me going into games and making sure I came out and when I went low one of them forced me to drink lemonade and when I came back up they snuck me into the vesting room to make sure I made the next game with the rest of the group. Before these guys were just people I saw every once and a while when I came to play a few games. But accepted me into the group and gave my best friend a break from constantly having to watch me, which I think she was thankful for. I'm glad my parents let me hang out with them until midnight because spending time outside of the family, not having to talk about health problems all night and answer questions, and just being able to be myself was exactly what I needed to pull me out of this monotonous funk I was in. I was also wearing the Halter Monitor and carrying the pack in my back pocket. So you can see the 7 lead wires sticking out of my shirt and going into my back pocket and only one person asked me what it was! It's really hard to play laser tag with 7 wires attached to your chest by the way, but I managed it. :) As soon as I'm able to get a job again I'm going to apply there because they're all really nice. I hope you're weekend is just as fantabulous!

Keep your head up and keep smiling,
Ellie <3

Sunday, September 22, 2013

Elliot The Elephant

     Elliot the Elephant. He's become my new companion. There's a story behind this little guy, and by golly you're gonna want to hear this. A few weeks ago my Grandma and I went shopping. I found this elephant for $2.00. So I carried him around so I could buy him. Well I blacked out on the ground and the clerk was the first one to find me. Well she and my Grandma started yelling at each other about whether or not to call 911. When I woke up the lady was pinning me down against the floor. I told her to get off of me and let me go, but she just held me down tighter. So with out a second thought I took the elephant that was still in my hand and I smacked her across the face with it.. she let go of me. I handed her three dollars from my purse and walked out.
     Elliot has been by my side every step of the way since then. When I come out of these episodes I'm scared, I'll admit to it. Especially when there are people I don't know involved. Elliot has protected me once by getting the lady to get off of me, in my mind he can do it again. It's sad I know. I'm 17 years old I shouldn't be so dependent on the stuffed animal. But he's been there. Last Tuesday I had what they classify as a grand mal seizure. What I would call a time to just call it quits. I woke up and my brother was the only one home so he called my grandparents. Why he didn't call 911 I will never know. But it was bad. Elliot the elephant was the only thing that could calm me down enough to talk my brother through what to do it it happened again. And it did. It was a bad night and the elephant was with me the whole time. I call that friendship. I'm going back to the neurologist tomorrow to see what to do next, but until than Elliot the elephant and I will be keeping close to cushioned ground because having a full on seizure hurts your head.. just take my word for it. So what makes you feel safe?

Keep your head up and I highly recommend not smacking anyone with a stuffed animal they tend to not appreciate that,
Ellie <3

And just for your video enjoyment... :D Enjoy.

Monday, September 16, 2013

Heck Yeah I did!

     I've had a few good days lately. Sure, I'm still blacking out, sure I'm still frustrated, but by golly I've had a couple "heck yeah!" moments this week. Starting with Thursday.
~Wednesday I had my first seizure free day in one whole month! "Heck yeah I was!"
~Thursday I had my first few blackouts at school, but my teachers and I handled it quite beautifully and none of us freaked out. "Heck yeah we did!"

     On Thursday afternoon my mom and I left for Wyoming to go visit some family members of ours. She does cranial therapy which quite honestly I still don't understand, but it was supposed to help and I'm kinda grasping at straws here so I went. He is a highway patrol officer who was a paramedic before. It was an interesting weekend.
Race Day 
~Well I made it the eight hour trip. "Heck yeah I did!"
~I ran a 5k with out blacking out in the middle of the road. "Double heck yeah I did!
~Woke up at 4:30 am with a blood sugar of 45 and got it back in range with in 30 mins. and woke up with a 95 the next morning. "Heck yeah I did!"
 I also thought I would share some other interesting findings with you.. So this weekend I was just kinda chilling and I blacked out. Well after they found me 15-20 minutes later I went and sat down and I was just like super dizzy. So he decided to check my vitals just to see if we could find anything. So he checked my pupils they responded fine I guess (I don't really know what that necessarily means but I guess it's a good thing.) Anyways, and then he checked my blood pressure, I don't remember what it was, but I don't think it was anywhere out of the ordinary. And then he was just kinda checking my pulse and I blacked out. When I woke up he said that he could feel it happening because my pulse just kinda disappeared. He said it was fine it was staying normal and then all of a sudden it was gone. Just like that, gone. Just for a few seconds and then when I started convulsing like I normally do it came back. The frustrating part is my EKG and echos come back normal every time. Wouldn't they show that? So after this whole glucose this we are for sure going back to the cardiologist and getting me on a Holter Monitor or what ever that's called because by golly that's just weird... and not normal. So yeah that happened.

     Today I also had a endocrinologist appointment with a different endo than the one I went to a few years back.
~Got a CGM put on for three days and have actually kept the food log up to date for more than three hours. "Heck yeah I did!"
    ~Trying to upload the picture of the CGM is gonna be a "heck no I can't", but if you follow me on instagram or twitter I posted it.

    Lately I've discovered that it's good to let yourself celebrate the positives. Because it's not the negatives or the positives that define you. It's how you handle what it thrown your way. What were your wins this week?

Keep your head up and celebrate the positives,
Ellie <3

Thursday, September 5, 2013

First Day Stories


This was the best 6th grade photo I could find. The girl to my right was a friend of mine :)
The best senior me picture I could find. :D 
     Today was my first on campus day! I don't know why it took me this long to transfer schools, but I absolutely love this one!! My mom and I went in early just so she could introduce herself and talk to my homeroom teachers and show them how to "knuckle pop" me out of it. They were really awesome and almost every teacher in the hallway whether I had them or not came to meet me and learn how to pull me out of it. I wasn't sure how much I would actually get to know my teachers because I spend 4 out of 5 days online, but I think I talked to more of my teachers one on one today then I have in a whole year at my old school.
     The way it works in at the beginning of the day I go to my homeroom. There we spend the first hour doing math and they have math teachers in each room to help you with any questions or confusion. Then the second hour is set aside for me work on what ever it is that I need to work on. And all your teachers go from room to room and check in with each of us one on one to make sure we don't have any questions or problems. And finally for the last hour we go to a specialty class or an elective. Mine is world affairs. Which is actually turning out to be a pretty interesting class. My world affairs teacher is... interesting. He's an awesome teacher, but I was worried because he doesn't seem like the type of person who would handle stressful situations well. In fact he told us that. So after class I went and introduced myself and told him that if I was to ever go under in his class all he needs to do is walk over to the door and holler for the nurse because her office is across the hall. I feel better about that now.
     Another first day story: I was sitting in my third hour class (world affairs) and I happened to see out the window the fire department and ambulance showing up. Is it bad that I might of had a mini party in my head because finally for once they weren't there for me? Because I might have. Going through a whole four hours with out blacking out is a HUGE accomplishment for me. And although I sincerely hope that person was okay. I'm really happy they weren't there for me. One day down nine more months to go.

Keep your head up and keep smiling,
Ellie <3

Wednesday, September 4, 2013

School Tyme!

      I don't know why I didn't switch to this hybrid school earlier in my high school career. It is the greatest thing since sliced bread I swear! How it works is I do all of my classes online for four days a week and then one day a week I go to their campus and I meet with all my teachers and do hands on activities, get help on any assignments I'm having trouble with, and other stuff. Well tomorrow is my first day going to the campus and I was nervous about having an episode while I was there because well having a student you've just met have a seizure on you normally freaks people out. I've been talking with some of my teachers just letting them know ahead of time and told them if they ever see me tweaking in the hallway it's not drugs (I've been mistaken for a drugie a few times before.) And my government teacher responded back saying he was also my homeroom teacher. Which means I spend three hours in his room and then one hour in another room. He said he would keep an eye out for me and let the other teachers in my homeroom know what's going on and that I'm not just trying to get out of work. This made me feel a lot better about going tomorrow. At least they have been kind of briefed on what is going on and maybe they won't freak out as badly now. I'm excited now instead of nervous. :) It's finally my senior year, maybe I'll actually get to be semi-normal again!!  WHOO HOO!! If you're in school how is the beginning of your year going?

Keep your head up and get an edumacation,
Ellie <3