Suspiciously Dressed Female

   

      I know I haven't posted lately, it's been super crazy and their really hasn't been much to blog about story wise... until today...
     I'm walking again!! It's been 50 some odd days since my last seizure! WOO HOO!! Every day is another day closer to having this whole mess behind me. It will always be with me, but it will be on the back burner of my brain which I can deal with. I'm starting to get back to normal. Which is a funny word to think about because I haven't been "normal" for almost ten months. I'm able to have alone time again with out someone constantly with me 24/7. And a big this is I'm able to walk by myself again! I'm allowed to walk to work which is a big step for me since the last time I walked to work two guys found me twitching on the side walk. So in between my house and my work is a park and there's a four foot wall almost all the way around this park. So everyday when I walk to work I hop the wall, if I were to walk around the park and not hop the wall it would add an extra 1/4 mile to my walk and I'm going to admit I'm lazy. So anyway I've been hopping this fence since August, minus when I wasn't walking. About 1/2 a mile past this fence a cop car pulls up next to me. He rolls down his window, I take out my ear buds. He steps out of his car and asked me what I was doing. I said I was walking to work. He asked me where I was coming from. I answered home. He asked me if he could see some ID. I pulled out my ID and asked why he had stopped me. He said "We got a call from someone saying a suspiciously dressed female was hopping fences." Let's keep in mind that I'm wearing black work pants and a Star Wars shirt, if that's suspicious I'm concerned. I was like "soo you assume that's me right?" He nodded. I explained to him that the fence I hopped was the park fence... and public park. And that I was just being lazy and didn't want to walk all the way around. He asked me a few other standard questions. About five minutes later he handed me back my ID and started to get back in the car. "Soo about the fence, am I allowed to continue to hop it?" I asked because I would like to know for the next time this happens. "Yup. Have a good day at work." And then he drove away. I got the cops called! This has happened once before walking home from the bus stop but not because I was hopping the fence, because I was super low and looked like I was drunk.

Keep your head up and don't hop fences,
Ellie <3
   

72 Hour EEG (Day 3)

The bed head/matted down/sticky mummble of hair picture.
(This pic was taken at 3am soo I have no idea why it's green.)  

     

I know you all were waiting on pins and needles to find out what happened today. Well, it hasn't gone all to fantastic. I reached my breaking point late last night and I'm not guaranteeing all the wires will stay intact tonight... I might be pulling them out soon. It's not that this is painful or anything it's just not fun. It's itchy and

My new cover all the wires so they don't fall off look.

hot and the gauze fell off last night so it's a sticky handkerchief hair mess thing with wires. It's not attractive. I slept with exposed wires last night because the gauze fell off and I slept over at my Grandparent's house and I couldn't find anything to rewrap my head with so I slept without it covered. Terrible idea. They use a special glue to keep all the wires attached to my head and between the head glue and the gauze I've managed to work up the worst bed head/matted down/ sticky mummble of hair you have ever seen and it's not pleasant to have attached to me right now. So that was fun. Because I didn't get much sleep at all last night I've been really tired, cranky, and moppy all day which hasn't been fun for the people around me. My mom and I went and got our nails done which felt really good and they're really sparkly now. And then I just kinda sat around literally doing nothing. And let me be the first to tell you this, but sitting there doing nothing

My sparkly pink nails in honor of Valentines Day...
(it took 7 tries to get this picture.) -____- 

and giving yourself the opportunity to think about how not enjoyable this EEG is, is what pushes you over the ledge. I just broke down in tears. There was now consoling me, or calming me down I just needed to cry so I did. Something very therapeutic for me is cooking/baking so I made food, dinner to be exact. Than I baked 24 cupcakes and 16 chocolate chip cookies. And then I locked myself in my room to stare at the wall again because I obviously didn't learn my lesson the first time. I am so done with this EEG thing I can't even put it into words how annoyed I am. So I'm going to go to sleep now and hope that tomorrow morning takes a while to get here so I can just sleep and not think about nasty hair and the wires lost with in it.

Keep your head up and keep yourself busy,
Ellie <3

And for your enjoyment and to keep you smiling... A CAT PICTURE!! 

Your welcome.

72 Hour EEG (day 2)

My face looks awkward. But this is just after I woke up from my first night with this bad boy on. 

     My first night with the whole EEG thang on went fine I guess. I kept waking up and despite what they tell you this isn't the most comfortable thing to sleep in. I did it though. Like I said yesterday  it's best to plan as many things as you can to keep yourself occupied and keep your mind off of the the wires attached to your brain. So after breakfast we set off to play a few rounds of laser tag which let me be the first to tell you, it's extremely difficult to do so. I still came in first and it was a great distraction. I took about an hour to decompress and relax and then my head started itching so I started some pinterest projects that I had found. My first project was to bleach a quote unto a shirt with a bleach pen. That actually turned out really cute. I'll post a picture of it later. My second project is a candy dish with glitter on the inside. It's still drying and it's not quite turning out like the picture I saw so I might have to do some re-do work on that tomorrow. Now it's dinner time. I'm almost done with my first full day. Honestly, I've made it a lot longer than I though i would. I'm in high spirits still and although my head is hot and itches I'm doing alright. 

Keep your head up and your spirits high,

Ellie <3

72 Hour EEG (Day 1)

     I was opposed to this test from the very beginning. I had a 24 hour EEG done in August, the first time I was admitted to the hospital. An EEG is basically charts your brain waves and anything abnormal is considered "seizure activity". My neurologist said that the 24 hour EEG showed no signs of my episode being a seizure. So I don't understand why we're redoing this test, but for a longer period of time. It's also frustrating that I'm now 5 days episode free, so if I continue on this trend of no episodes this test will show NOTHING because they won't have anything to look at. Any who an EEG isn't painful it's just extremely uncomfortable. My head is now really heavy which is an unusual feeling that I'm not a fan of. Also because my head is wrapped up in so much gauze and glue with tape or something my head over heats really really fast. It's SUPER itchy too and I can't itch it because it's like the Great Wall Of Gauze all up on my head. Now although this thing is super ugly I'm still going out with this bad boy on. I will not let this hold me back. Laser tag?? I'm doing it. Movies?? Done. Hanging out on the Las Vegas Strip?? It's happening. I wear my Despicable Me knit hat over the ugly a$$ gauze and I pretend like it's not there. I highly recommend if you get a 72 hour EEG and it's safe for you to go out plan as much as you possibly can to entertain yourself. It helps take your mind of the wires that are connected to you. I just keep telling myself I can do this... maybe.

Keep your head up, because you can do this,
Ellie <3

Super ugly gauze wrap that makes your head itchy.

All my wires. They're like four feet. *Tip* If you do get an EEG place the whole thing in like a draw string back pack. That way all the wires and the pack that comes with it are contained. Trust me it helps. 

I put my minion beanie over it when I go out of the house. I find more people focus on how awesome my beanie is than the wires sticking out of my brain. 

Medical Alert Bracelet

*Before I begin this post I must say that these opinions are solely my own. I am not being paid to say anything in this post, I am just extremely happy with this product and I want everyone to feel just as comfortable as I am with wearing a medical bracelet.*

     I have been wearing a medical bracelet since the Summer of last year. I was starting to pass out a lot and a common problem I was seeing was the fact that it was hard to ID me and get a parent's phone number from me when I was just coming out of an episode. Some one had suggested wearing a bracelet before, but I thought they were all clunky and not practical and I didn't think anybody would look at it if I passed out. But I looked around for something I liked. I came across just a silicon band that I could put my name and my mom's number on and I ordered that. I figured I would only wear it while working out or when I wasn't with my parents. But it was ugly and I'm not a big fan of ugly so I stopped wearing it all together. Then one day while reading blogs from other people I stumbled upon a post about medical alert bracelets and how they were having the same problem as I. I kept reading to find out about Lauren's Hope. It's a company that combines safety with style. I glanced around their website and started finding bracelets that I fell in love with. And I loved that I could make them my own by mixing bands with my alert plate. I ordered my first bracelet in July. I wore it all day everyday, and two days after I got it in the mail, an EMT used it to locate my mother while I was unconscious. I like change. I'm always changing my ear rings, my style and now I'm constantly changing my bracelet. I've grown to a collection of six bands and I change them as often as I feel. I just received my newest one in the mail (it's glow in the dark!!) And I love it. So if you're in the market for a new medical alert bracelet/necklace or maybe you don't have one and you think you should try Lauren's Hope. I've been wearing a medical alert bracelet every day since I ordered my second one and trust me it's come in really really handy a few times already. And like they always say it's better to be safe than sorry. So what does your medical alert look like?

Keep your head up and stay safe,
Ellie <3

4 out of 6 of my bracelets 

The one I'm currently wearing is glow in the dark with a purple plate. 

Most of my bracelets live on my dinosaur by my bed until I decide to wear a new one. 

Work Life

 

  I love where I work. Work has become something I look forward to. It's my one opportunity to get out of the house. I love the people I work with, I love what I do there. I just love work. Yes, I've have had some episodes, but we taught them how to handle it and they've been cool with it so far. Today I felt an episode coming on so I asked my lead to stand in for me. He seemed frustrated about it. I felt bad because we were really really busy and now he had to stop what he was doing and stand in for me. I walked into the break room and a manager came in and sat with me until I went out and then she pulled me out of it. That's the nice thing. I can feel them coming and give everybody a heads up, and there are ways to pull me out of an episode. I was back to my spot in less than five minutes and everything was fine. I still felt really bad because they happen a lot and I know it's probably scary for them as well. Later I was standing at a new spot where I'm off by myself. There's guests and everything, but none of my coworkers pass by very often. We have a call button that we can push in case of emergencies that connects to the office. So although I hate pushing the call button for me, I had to because I didn't want to go down in front of our guests. So once again I was rushed into the break room, went out, brought back all with in a matter of minutes. I called my mom just to let her know what was going on and my mom was frazzled because she was far away. Because we live so close to work, if they feel it's necessary one of my parents sits in the parking lot so that they can come in if need be. I asked my manager if he wanted someone to come sit, because it was really busy. They all laughed and said "no we got this handled." Hearing that was awesome. It reassured me that I wasn't being a burden. That they weren't mad at me. I can't control when my episodes happen, I can't control that they happen. They understand that and are willing to work with me and help me out when ever needed. That's good to know. Just another reason why I love where I work.

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

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.

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

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

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

Another Story For The Books

     This school year I decided to do online schooling as it just was more flexible with all my episodes, doctors appointments, and other stuff. But I also go for one hour a day to my old school to participate in color guard. Today was my third day doing this and because of today's events... probably my last for a while. I got there a few minutes early so I used this free time to use the restroom when I was finished I set my backpack down so I could get out my phone. That was the last thing I remember. I woke up to the school nurse, two campus monitors, the school police, the dean, and a math teacher surrounding me yelling things into radios, shaking me trying to get me to answer questions I'm 100% sure a few seconds after that I went back into another tweaking sesh because the next time I woke up the fire department was prepping me for an IV and setting me up on oxygen. Then for a third time I fell back into the darkness of a seizure. From what people told me they started me on the anti-seizure stuff in my IV and finger popped me out of it (there's a pressure point that causes pain which I respond to and wake up). I remember waking up and ripping the oxygen tube thing out of my nose and they also said I wasn't cooperating, well I had good reason it kind of scares a person to wake up with a needle in their arm, tubes in their nose, and people yelling at them to "stay with me, keep your eyes open, talk to me sweetie...". I finally calmed down and let them do their thing. I don't know what stuff they put in my IV because I was soo loopy it wasn't even funny. Unfortunately I had to go to ER because well, I'm not really sure why but they told my mom we had no choice. So they lifted me up on the gurney and wheeled me out... in the middle of first lunch... with over 200 kids staring at me... and I probably looking stoned as heck because like I said the drugs made me so loopy. They took me to the ER and discharged me with in two hours with no new news. But that's not even the fun part. My best friend texted me asking how I was feeling. I asked her how she knew her response: "I heard you O.D in the girls bathroom." Yes folks there is now a rumor going around that school that a girl O.D in the girls bathroom and had to be taken to the hospital. The fun part is the girl they're talking about is me. She had heard about it and asked her sister who has first lunch what happened and her sister told her that "Elizabeth must of had an episode in the bathroom and was taken to the hospital" So yea... I can now check over dosing in the girls bathroom off my list and I didn't even actually do it. As to how I feel about the rumors I'm not really sure. I find it funny right now because I know what happened and it's funny that kids can take a seizure and turn it into overdose in a matter of 30 minutes and I'm sure it will get annoying soon if my parents let me go back to guard because I'll have to answer questions and be pegged as a druggie and I don't even go to that school anymore. I guess this is just another bump in the road. :)

Keep your head up and DO NOT overdose in the girls bathroom,
Ellie <3

Hurry Up And Wait

   

     A few days ago I posted briefly that I had been admitted into the hospital. Last Thursday I was at guard camp working on our new routine when I fell to the floor. A few minutes later I began seizing, or what looked like seizing. My head shakes and bobs up and down and my hands twitch. I was unconscious for 45 minutes my father finally made the decision to call the paramedics after the first 30 minutes and I was still unconscious when they arrived around the 35 minute mark. My father made the call to transport me. While we were sitting in the parking lot they were going to release me to my father because they didn't think there was anything wrong with me. I was responsive and I knew where I was and they didn't see the need to make my father waste money on taking me to the hospital if I didn't need to go. A few minutes later I was unconscious again so they reloaded me into the ambulance and off we went. I blacked out for a total of 32 times that day and 15 the day after. When I was admitted the hooked me up to an EEG. It monitors my brainwaves for 24 hours and from that they can determine whether or not this is epilepsy, from what I heard in the hospital it's most likely not.. They released me Saturday afternoon and told me to make an appointment with my neurologist to go over the results. I've now been told I can not participate in guard until I have this under control, I may not be home alone at all, I may not use the restroom or shower with the door locked, it can be closed thankfully just not locked, I've been stripped of my independence completely. I can't do anything fun no Wet 'N Wild, no laser tag, no going to the park, no walking to 7-eleven, nothing until we have this under control and that kinda sucks.

     I finally had my neurologist appointment yesterday. He was supposed to go over the results of the EEG and ultimately tell me if I had epilepsy or not. We arrived at his office and waited in the waiting room for an hour and a half. Then when we finally got to the exam room the nurse told us they didn't even know I was ever in the hospital and they hadn't received the results or even the preliminary reading. My mom was furious. I was pretty much devastated. My health hangs on the results of this test I needed this test to hold some type of information to reassure myself I wasn't just going crazy. I've kept a strong face on through out this whole thing but I'm starting to find myself loosing hope and crying alone at night. I'm not depressed, I'm just lost, frustrated, confused, and tired of fighting. When I have one of these episodes I come out of it exhausted. My body is pushing itself over an edge and there's nothing there to save it. I was really hoping the test results could catch me from falling anymore than I already have. I know it sounds like I'm over exaggerating, I know this all sounds far fetched but I assure you if you were sitting in my position you'd be saying the same thing. I have an appointment with my pediatrician today and hopefully he'll give me something... anything. Because I don't know how much longer I can hurry up and wait. 

Keep your head up and breathe normally,

Ellie <3  

Hospitalized.

Hey guys! If you follow me on Twitter or Instagram you've probably heard that I have indeed been hospitalized. I had a really bad episode at school on Thursday I was out for a total of 30 minutes and I started convulsing multipule times. I had a total of 32 blackouts yesterday. Its been rough and I'm trying to keep my head held high. I'm currently in the middle of my eeg. I've had three episode including a shaking one. Its so good that its happening with the eeg on. Yea I'll try to keep you guys updated but please keep me in your thought and prayers.

Keep your head up and keep smiling,
Ellie <3

This Is Becoming The Norm.

 

     I got the paramedics called again. This is starting to become the norm. Apparently I blacked out on the floor at Khols and a lovely patron found me while looking for her daughter. I was unresponsive, breathing, and lying face first on the ground. They called 911. I was indeed at Khols alone and my mom wasn't answering any of the calls. When the paramedics arrived I was almost out of the woods, I was still kind of reoreintating myself, but I could respond and answer questions and move my legs. It makes it a lot easier to go through stuff like this when the people who are taking care of you are in a good mood. The paramedics that responded were awesome. They took my vitals and asked me the normal questions, I've become an old pro at explaining what normally happens and handing over the emergency sheet, which once again they we're really excited to see. They said most adults aren't even this prepared so I feel special. My parents still weren't answering so he was like, we'll just wait here til they decide to get off the couch and come pick you up. Like I said the paramedics were awesome this time. This is starting to become the norm. I black out, the paramedics are called, and then we sit and wait... and wait... and wait for my parents to actually respond to any of the messages. I'm becoming a pro at pretending at keeping it all together when I wake up and reorientate instead of mentally breaking down because I'm embarrassed like I used to. I told my mom I want to go back to square one and start from the beginning. I've been noticing that this is affecting my blood sugar as well. I spike to almost 200 about a half hour before it happens and then drop into mid 50's low 60's when I wake up. I want to talk to my doctor. I don't want my mom to talk to them anymore because I don't think she's getting the job done. I'm taking over this rodeo and I don't plan on stopping until I get an answer, because as much as I'm becoming a pro, I don't want this to become the norm.

Keep your head up and keep it together,
Ellie <3