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

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

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

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  

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