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

Just Keep Swimming

   

      I'm having a problem discussing recent issues with my parentals. They don't actually believe there is anything wrong with me. Yes, they've seen it, yes, the paramedics call them at least once a week now, and yes, I tell them every time something has happened, but they don't think it's anything serious. They think it's anxiety or my way of crying out for attention. If that was true I probably wouldn't have gone on a mini rage yesterday to my best friend. Because if it was my cry for attention I would have the control to stop it at any time but... I can't.
       The other day I was going out. But, because of recent black outs and them happening way more frequently in public I decided to write up and print out an Emergency Care Sheet. It has my name, birthday, what I have (or what they think I have), signs I know I have before a black out, what to expect during a black out, how they can help, when and if they need to call 911, and all my emergency contacts. I printed out five and put one in my car, one in my meter case, gave one to my best friend, taped one up where I work, and I kept another to give to my guard instructor next week as well. I thought it was a brilliant idea and when I blacked out on the shore of the wave pool it proved to be fantastic. A lifeguard found me blacked out on the shore of the wave pool so it's not like I drowned or anything, but anyways, when my brother came over he went to get my meter case. When he came back the swarm of EMT's were around me. I was awake, but I wasn't "together" if you will. I don't remember anything until a few minutes later when they said the wheel chair is on it's way and I asked if I could just walk. I mean I couldn't feel my legs, but I hate riding in wheel chairs. The supervisor responded that there was no way they were going to let me walk anywhere and that it's not like anybody knew me there so there was nothing to be embarrassed about... half of my school was there. -_- When we got to the first aid station the supervisor was looking through my meter case trying to pull out the things I needed to test and debating out loud whether or not the should call the paramedics because I hadn't been able to tell them what was wrong. As he was about to hand me my meter he pulled out the sheet. He asked if he could read it, I just nodded still not feeling all to well. He just started smiling. He set it aside and watched me test. When it came back with a 62 he told my brother to go get me a snack and handed me a glucose tab from my bag. He then sat down and raved about how the sheet helped. That he know knew exactly what to do, what was wrong with me, and had all my emergency contacts. About thirty minutes later I had bounced back into range and it was time to call my mom. He told her that the emergency sheet was a huge help and that they didn't call 911 because they knew this was normal. When I got home a few hours later my mom lectured me on having the sheet in my bag. She said it caused unnecessary panic and they would have done just fine with out it. Yet, they almost called the paramedics because I blacked out in a WAVE POOL, and didn't respond for almost three minutes. Yea, the emergency sheet caused the panic... It's frustrating how to be safe I have to do all the work, I'm the one who has to make sure everybody else knows how to help me where ever I go. I understand that this is happening to me, but sometimes it's easier to deal with things when you have the support of the people closest to you. I'm scared to go anywhere now, but I have to because I can't stand sitting in my room all day. It's frustrating that I can't get the 24hr. EEG until October because I'm "not a priority case." It sucks and I don't know how much longer I can hold on and keep a brave face up.

Keep calm and just keep swimming,
Ellie <3