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. 

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 

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

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  

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

Part 2 Of My Mystery Medical Condition

  I'm trying not to let the constant black outs slow me down, but it is. They're impossible to ignore, they're starting to get in my way. Twice just this week I've either almost been kicked out or was kicked out of some type of fun activity. Which sucks by the way, especially for the people I go with. My brother loves sky zone. And so do I. It's like this warehouse just full of wall to wall trampolines, and foam pits, and dodge ball, it's pretty much one giant trigger for me I've discovered. Any ways, I noticed the symptoms of a black out coming on. I got myself off of the trampolines and sat down on the ground, now that's the last thing I remember, but apparently the story gets better. From what I was told when I woke up is that I sat down on the ground where I wasn't supposed to and the manager asked me to move down to the benches. Apparently I began arguing with her and didn't move. I guess while she was checking on the game of dodge ball I blacked out on the ground. They left me there.. which is exactly what you're not supposed to do by the way. But, they did get my brother who surprisingly knew what to do. I guess I came back about two minutes later. None of them were phased and they gave me a free water (which my brother drank -_-) and they said if this happens again I would have to leave. Which sucks because that means my brother would have to leave too, and he love Sky Zone. Well that was the last of that day's black outs. Then my best friend and I went to Wet 'N Wild for a day in the sun. All was going surprisingly really well. I hadn't gotten dizzy, I was able to keep up with her we were having an awesome time, and then everything went to poop. And I mean that in the worst possible way. We were standing in a line waiting for a tube when I turned to her and said flat out "I'm about to black out." She's seen in happen before, she's used to it, but since it's been happening so frequently we decided to go to first aid. We made it, I kid you not, just. in. time. They sat me down on the cot and called for an EMT, no one was able to respond as they thought I was a minor case and they had a guy who had just had a low blood sugar that caused him to pass out. What they didn't realize was the same thing was about to happen to me. There was an EMT there who had just gotten off and he started freaking out. This is where I lost it. He had me on the finger pulse reader thing, and started asking me questions that I just couldn't answer. My friend was trying to explain what was happening and what was about to happen, and what I needed. I don't remember anything after this, but this is what my friend told me: the EMT then started assessing the situation and taking my vitals. They took my blood sugar which was 108 I think. I took me a while to respond to simple directions. They put me on O2 when I started to take a turn for the worst. They ripped off my bracelet to call my mom, I'm so thankful I had it on. But she didn't answer. Apparently at this point they were just trying to keep me awake and then I fell forward. I will forever thank them for this because that would have resulted in a concussion, but they caught me before I fell over and onto my face. Apparently I was out for about 15 seconds and I had a record come back time. They took my blood sugar again and apparently it raised concern. Apparently I had all the signs of seizing soon, so they called it. They were going to have me transported. A few seconds after this decision I came back completely. But it was to late they had called 911. Which was fine by me, my parents weren't going to be to happy about it, but in a way I was happy they did. Maybe now, my parents will believe me. Any ways, they started to look for a new contact number. My friend still not freaking out, gotta love her, started calling my father, who said he was on his way. When the fire department arrived I was fully aware and had been getting caught up on what had happened. The main captain was awesome while they were putting me on a full heart monitor and taking my BP and blood sugar he said maybe a water park wasn't the best idea until I was fully diagnosed and had it under control because what if I blacked out under water? I giggled. He rolled his eyes knowing full well that it has happened before. They weren't able to do an EEG on site but they did get a mini EKG in. And I guess my heart would triple beat, he used a more scientific word, but that too raised concerns so it's back to the cardiologist I go. But, they were able to tell my father the glorious words, "she really did have what looks to be a seizure, we recommend we transport her for further observation as this raises a lot of concern." My father said no, but he heard it from a real live fire man that it actually happened. They still had me on O2 when he arrived which also made him believe just a little bit more. They did indeed make me go home because apparently I was a liability to keep on property which I understand completely. So we headed home. My friend drove and I road shut gun. I feel really bad that because of me she had to leave early. But she was awesome the entire time telling them my medical history, all my medications I'm taking (which was cool to know she knows that) and trying to calm the EMT's down, because I guess they weren't expecting to have to call 911 for me. I enjoy scaring the living daylights out of Wet 'N Wild staff, because this is the second time this has happened there. I sent them a thank you card for dealing with me and for their quick response. The lesson I learned from this experience is to ask for help they're there to do just that. I'm glad my friend was there to relay information and I'm glad they didn't hesitate to call 911 it just sucks I had to leave.

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

Part 1 Of My Mystery Medical Condition

     This post starts a few weeks back, and the story is still evolving but I'm ready to share so here goes.

The group I went to NYG with. :)

     A few weeks ago I was given to opportunity to San Antonio with my church to the National Youth Gathering. Let me put this in perspective. I was going to San Antonio with out my parentals, there was 25,000 other teens who were also in attendance. I was excited, nervous, but excited. A few days in we were sitting in a group waiting for our chaperons to come back from a meeting when all of a sudden I was surrounded by paramedics. Apparently I blacked out at some point. No warning, no symptoms, nothing. I was told that I was all sorts of disoriented. Which makes it all the more fun to explain that this happens a lot when I finally came around. The gathering had a safety team which was dispatched, but there was nothing they could really do. The gathering also had EMT's on call at both the convention center and the Alamo Dome, they were called. By the time they responded and I was taken back to first aid I had became fully aware. They took my vitals, and incident report, all that jazz and I was free to go. That's what I thought was the last of it... I was a little to hopeful. Yes, I indeed blacked out at least twice a day.. every day the rest of the week. Almost with out fail. My parents were called every time and at one point I was sent to the clinic. I was not allowed to participate in daily activities with the rest of my group and I was banished to the hotel unless we were at the mass event or dinner. It sucked. And it most definitely wasn't fair. I understand my chaperons didn't know what was going on with me, and that they were just looking out for my best interests, but it happened at the hotel too, when I was alone. It's not fun to wake up on the bathroom floor of an unfamiliar place knowing exactly what happened, but not having any recollection of what happened. I became the outcast of the group. Only one of the girls would really make conversation with me, and I was on a first name basis with the EMT's and the head of the safety team. It sucked. I was hoping it was all a freak thing and when I got back home and in my routine it would stop. It didn't. I had a check-up appointment with my neurologist the next Tuesday after I got back. My mom had never actually seen a black out episode so when it happened right in front of her she didn't really know what to do. I was sitting in the examine room with her in the chair next to me waiting for the doctor. I'm sure I was rubbing my finger tips together like I normally do right before it happens, but she's never seen an episode so this probably didn't raise any red flags. But apparently I fell over onto her. She thought I was just screwing around and was really confused when I told her I had no recollection of what she was talking about, or where I was. Well she can check seeing an episode off of her list I guess. The doctor had nothing to say except order a 24hr EEG and send me to a cardiologist... for the third time. <-- this information will come in hand for part two of this mystery. And for now I'm supposed to just consider myself epileptic. But then, a few days after my appointment they went back down to maybe one or two a week. I'm really confused, my parents have given up and are pretty much considering me a hypochondriac even though they've both now seen an episode in person. I'm just up a creek with out a paddle and once again fighting.. alone. Even though I had a crappy time in San Antonio (besides all the cool parts of it) I miss having the EMT's who knew me and actually tried to help instead of shutting me out and kind of leaving me for dead.  I guess I need to just take my own advice: Keep my head up. :)

On the left was the head of the safety team at NYG. And on the right
was one of the EMT's. It's sad we all wanted a good bye picture before I left because we became such good friends.

Keep your head up and keep smiling, 

Ellie <3

Epilepsy, Migraines, and Hypoglycemia OH MY!

     There was an abnormality. 

       I went back to the neurologist for my four week check in and to go over the results of the EEG and the MRI he ordered at our last visit. The MRI came back normal. But the EEG which is a continuous scan of the brain wave activity (I think) came back with the slightest of slightest abnormalities. Which means it's not just migraines. I have indeed have had seizures. He asked my mother to leave the room so he could talk to me and told me that this means I have indeed have had seizures before, but it's not the main cause of most of my symptoms. It's only causing the days where I black out and have absolutely no clue where I am. But, he was indeed going to put me on preventative medication that not only prevents migraines but some doctors use it to prevent seizures as well. HE BELIEVED ME! You see, I had an episode about two weeks ago where I don't remember anything and I woke up the next morning with a bruise, I kid you not, six inches long (I measured it) and I counted 4 other bruises on my back. That's not normal. He realized that. He did something about it. He also added another rescue medication on top of my other on which puts the count of medication to three. Topimax is my everyday, Imitrex is the better rescue medication, and fioricet is my back up rescue. I am now set. He wants to see me in six weeks to check in again and touch base but it's a start. I'm finally getting answers and it feels amazing. 

    

Withdrawing from my high school

     I've finally talked my parents into letting me do online school next year. It's half online by myself and half in a classroom setting. I'm actually really excited to do this my senior year. I never liked high school for some reason so I'm hoping this is a more positive experience. And I still get to participate in Color Guard with my current school. It's like a win-win all around!

Medical ID Bracelet 

     My school nurse talked me into getting one of these when the janitor found me in the hallway passed out for the second time this year. She said it didn't have to be elaborate or anything it just had to have basics. So I ordered one last Wednesday. Little did I realize I ordered it from a site in the UK so it should be getting here anytime now. It just has my name and my mom's cell number on the back and the medical symbol on the front. I figured that was enough right? 

Okay, that's all for now. I'm hoping to get back into the groove of posting often as the Summer is starting and I will hopefully have more time. 

Keep your head up and you can do this,

Ellie <3 

PS: This song is absotutely amazing!