One Foggy Step At A Time

     You can't plan for everything. I can't tell you how much I wish that I could plan for everything because I would have made a few different desicissions yesterday. Like a different sweatshirt for example. If I would have known that my sweatshirt was going to be torn into two pieces I probably wouldn't have worn my work sweatshirt. To be quite honest I probably would have just called in.
     It started yesterday. I didn't have a ride to work so I walked. It's like a mile maybe a mile and a half walk. That's nothing, I can walk that in my sleep. I was walking fine I could see my work just across the street and then everything went black. Apparently while I was walking I collapsed and began convulsing. Two men happened to be driving down the street and watched it happen so they ran across the street and got the fire department. Because I was wearing the darn sweatshirt and unresponsive they cut the sleeves of my sweatshirt to start a line and get a set of vitals. I honestly don't remember any of this. I remember waking up and one of the firefighters started asking me the usual string of questions as well as where I worked. When I told him I didn't know where I was he said I was across the street from work. I asked him if I was going to be able to make it... he said I should probably just call in. That's the last thing I remember. But the day goes on. I was transported to the hospital because the seizures were still happening. While in the ambulance they gave me an aceditive to relax my muscles hoping to stop the seizures so now I'm just flat out loopy and seizy. It's not the most glamourus of combinations. The next thing I remember is being in the hospital and feeling like little ants were crawling all up my back and then when they made it to my neck they started to crawl down my legs. At first my mom thought I was just over reacting over a little itch. But then I started bawling and gasping for air. I was having an allergic reaction to some of the medication they gave me to help stop the seizures. They gave me more meds to counteract the reaction and help me breath. Next thing I knew it was four hours later and I was in a new hospital. The ER doctor came in and told me that I'm not having seizures. That none of the tests prove that its seizures and that it's all psychological. Now I understand that that's possible. But I've seen a psychiatrist and they've cleared me of conversion disorder. He kept saying that they could have killed me by giving me that medication that I didn't need and that it was my fault for not telling them they weren't actual seizures. I was told by my neurologist that they were atonic seizures which is indeed a form of seizures. So they're telling me that my neurologist was lying.. it was really really complicated and there was a lot of tears and doctors yelling at me and my mom and my mom fighting back. I really didn't have that kind of energy that late in the day and with so much stuff running through my veins. It was really quite an ordeal. The next thing I remember is getting admitted to my room really late at night and falling asleep soon after that. The next morning wasn't nearly as exciting. There was more confrontation with doctors and more medication but I was released by the end of the day. There are still so many holes in the story that I don't think I'll ever figure out.
     But I've come to the conclusion that you can't plan for everything. My mom couldn't have planned that she would have to get into a debate with an ER Dr.,  I never planned that I would get picked up off of a sidewalk and get drugged up to no end. You can't plan for everything. All you can do is learn from it and use that information to help you plan for other things. I never planned to be allergic to an anti-seizure medication and yet I learned that and now I'm planning ways to prevent me from ever coming in contact with it again. What are some of things you didn't plan for, but ended up learning something from?

More bracelets to add to the collection. I actually do remember taking this picture. Most of the drugs had worn off by this point. 

Keep your head up and take it one step at a time,
Ellie <3

Looking Back

     This year has been such a crazy and hectic year. Between me being in and out of the ER, getting a job, school, preparing for college, and planning for my future career everything that wasn't important to that moment in time slipped through the cracks. I haven't given myself a chance to breath lately. I'm the one that's filling my schedule, I could have made the time to just sit and write or sit and think, but I didn't. So today when I had the opportunity to do so and just reflect on this past year I realized many things.
      I realized that no matter how much I think I can handle on my own, it's such a blessing to have a support group around me. Whether that's my family, my best friend, the doctors that are working on my team, they are all part of my support group. Even on my weakest days they are there cheering for me and helping take each and every step. Through the tears (and there has been more than I'd like to admit to), the smiles, and everything in between. Every single one of them has been there for me; no matter how strong I think I am I found out it's always easier going through the struggles in life with the people that care for me most.

     I realized as well that something like this doesn't have to stop me from anything. I always told myself that at the beginning when it wasn't as bad or when it was first starting to affect my life. But it's not easy to tell myself that when I'm stuck in the ER for the rest of the day because of another seizure. Or when something else has to be taken away because it's not safe for me like driving, or walking somewhere, and even laser tag. I've had to give up so many things these past few months that it's hard not to look at everything and just want to give up. Throw my hands up in the air and say "I'm done." But I realized that giving up get's you no where. If anything it makes you back track. I'm not saying that I haven't given up at all, I'm just saying that I get right back at it. I take a few minutes to myself, tell myself that in the end everything will work out and than I get back at it.

     One of the biggest things I think I learned from this year is that answers don't just fall from the sky. They don't just happen suddenly with out any explanation or information preceeding it. I learned that to help speed up the process of getting answers I can't rely on anybody but me. I have to tell my doctors everything myself, with out relying on my mom. Not that she doesn't know what she's talking about, but I can explain what's happening to me better than she can because well... it's not happening to her. Also in the same respect I've had to work with my doctors by giving them input. When we try something new or test something new I have to make sure I'm telling them everything because the more information they get the better they can help me. But also if I think of a test we haven't done yet or a test I think we should relook at I need to speak up. I can't wait until later. I have to speak up, I have to advocate for myself.
      I've realized many things this past year. Most health related, but some not. I'm excited to take what I learned this year and apply it next year and even tomorrow. Everyday I'm learning something new about myself. I'm finding another piece to the puzzle. Now I just have to put the puzzle together. Here's to a happy and healthy New Year! What new things have you learned this year that could help make next year even better?

Keep your head up and never stop learning,
Ellie <3

This Wasn't On The Label

It kind of relates... maybe. It was a cute picture okay?!

      I've gotten back to life as usual since they put me on my new medication to help with seizures. I actually made it thirty-two days with out a seizure which is amazing compared to the 4-30 I was having a day before that. On day thirty-three I had a tonic-clonic seizure which only lasted maybe a minute, but I was unconscious for about a half hour after. They took me to the closest Peds ER and the ride there is a story for another time. But they released me around 3am about three hours after I was admitted with an upped dose of Keppra. Now instead of taking 1,000mg a day they've upped it to 3,000mg a day. I knew I'd be tired the first few days, but they didn't tell me the meds would turn me into a different person. They weaken my immune system which is perfect timing for cold and flu season and I've been sick 3 times in the last few weeks. It gives me increased anxiety, not like what will happen or how can I be prepared, but like major anxiety attacks the kind that makes you feel like you've just thrown yourself off of a ledge and you can't be saved. I have no apatite, for anything. I'm tired and zombie like all. the. time. and that's not how I normally am. I can't focus long enough to do school work and I have a major pounding blurry vision headache once or twice a day. I was hired and I start training soon, but I have no energy and for this job you need to have energy. My friends have started to notice because we used to hang out all the time, but I just don't want to be around people. They don't write this on the label, and I don't want to address it because it's working and I don't want to risk loosing any of the stability I've gained. But I'm not myself. I'm not okay. I can't be there for other people when I'm barely there for myself. Does anyone have any suggestions? Does any one have this kind of problem with their medication? I'm just at a loss. This isn't exactly what I had in mind when I though of being "seizure free".

Keep your head up and take it one day at a time,
Ellie <3

They Could Have Found It Sooner

      I turned in my Halter Monitor yesterday and they called us with the preliminary findings today. The Halter Monitor charted the electrical pulses in my heart for 48 hours. I think that's what it did, either way it watched my heart. Well apparently it shut off with-in the first 14 hours which sucks, but they still saw

something. I don't know how to explain it but my heart triple beats and normally that wouldn't be a problem, but mine did something else when it beated the extra time that raises some eyebrows, a lot. I'm nine days away from being able to do guard because the Keppra is working! But, this heart thing if the treadmill test they want me to do shows what they think it will show... it will be no guard for Elizabeth. And that would SUCK!! UUUUUGH! This is freaking me out more than it should. I can handle medication, but I can't handle much past that. They haven't told me anything further I have to go in for another appointment, but what if they have to do some sort of surgery! I'm flippin out man! It's driving me batty and my brain is going a thousand miles an hour but I can't do anything. Like I just keep thinking of the possibilities and what they're going to tell me and I can't seem to call myself down. Why is this freaking me out so much?! Shouldn't I be used to this bad new by now? But the Keppra is working which I guess is a plus. I guess I'll just have to wait until the next appointment.

Keep your head up and just keep calm,
Ellie <3

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 

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

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.