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

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

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  

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

I Finally Got What I Came For

     Today was my neurologist appointment. The one that was supposed to tell me once again there was nothing wrong with me, the one that was supposed to blow me off once again as someone who will grow out of it, the doctor that I was constantly told "not to hold my breath for." I got an answer. Finally for once I got what I came for. I got an answer.
     I got a diagnoses, a solid plan of attack, and a positive report overall. I was diagnosed with something so simple everyone thinks it's almost sad no one thought of this before. It doesn't explain the hypoglycemia, but I've come to terms with that fact. I'd much rather have to treat a low blood sugar than be found on the floor by the janitor. The neurologist spent 20 minutes talking to me asking me questions about every episode reading the journal I brought with me explaining everything he took the time to listen and I don't think anybody who hasn't been in the same position as me will ever understand how much that meant to me. He did an evaluation and handed me a packet. I'm officially diagnosed with Acute Confusional Migraines. Migraines, that's all it was. The blood vessels in my brain were constricting and I was firing something or other way to fast and my brain can't keep up with it. Well, that's what I got from his explanation. It causes literally every symptom I've been getting. Blurry vision when ever I'm trying to read something, jelly legs, shakiness  dizziness, nausea which has caused me to throw up,disorientation, EVERYTHING. Other people who have also had it describe one of they're symptoms as they're head filling up with air or water.. my mom thought I was just making that up! It's real! It causes people to forget their names, what they were doing, or where they need to go. It literally covers every symptom I have felt with this, including the blackout spells, fainting, and not being able to remember what's happened to me! He gave me a prescription for medication (don't ask me what it's called cuz I got no clue) but I take it when ever I feel the first symptom like it has to be with in the first two-three minutes and within fifteen minutes I'm supposed to magically feel 10x better. And you know what, I believe him. He's says it will help if I rest after I take one, but if I would like to and I am able to I can return to my normal activities and it doesn't cause drowsiness. He also gave me, I kid you not, "headache packet" it has a calendar and every time I get an episode I have to look back and write down things that might have triggered it. Hopefully soon, I will have a personalized list of do's and don'ts to prevent more of these migraines to happen. No one understands how happy I am to finally have a diagnoses and to have a plan. I came home and cried for a good 20 minutes because I was so relieved. He is ordering and EEG and an MRI just to be absolute sure I'm not epileptic or anything more serious, but this is it. This is the answer I've been fainting for over three months for. This. Is. It. I feel so relieved, so happy, so free. I can finally be myself again. I finally have my life back. Hopefully the medications work like they're supposed to and this is all solved. I finally got what I came for, and it feels amazing.

Now that I can proceed with guard with out passing out I'll be able to kick
more major butt at competitions! :D

Keep your head up and always look forward for tomorrow,
Ellie <3

The Uphill Battle And The Bloopers In Life

     Today's post will be a multiple posts in one post, post. Does that make sense??? No one? ookay then never mind. 

     Summer is such an easy going time of the year. You're done with school, you can hang out, eat when ever you need to, go places when ever you need to, it's all fun and games until the school years starts. I've started my countdown.We only have 7 days left of Summer. This is both exciting and completely unnerving. I'm excited to get back to the new school year, I'm excited to see my friends and start up marching season. But with all of that comes the constant flow of math, and numbers, and carb counts, and purchasing of frosting for me and the nurse, and getting last minute orders faxed in from the doctor, and packing snacks and guesstimating my schedule based on last year's events. I'm excited, but worried. What would you call that exerried? (Nevermind erase that horrible word from your memory.) The beginning of the school year is always such an uphill battle. It's always me and my body fighting against the rest of the world. And although there are other people who are going through the same thing, maybe even worse, none of my family knows what it's like to go through this every.. single.. year. So I'll start this school year with my head held high and my bg completely out of whack and I will conquer.

     Oh hey. It turns out I'm allergic to freakin cinnamon!!!!!!!!!!!!  I found this out the other night while making cookies, amazing cookies might I add and when I was finished I, like always, licked the bowl.(I mean who doesn't right?) Anyway I haven't made this type of cookie in a few years so I licked a lot of the bowl because it was good. And then my tongue started itching, and then a few minutes later my eyes started watering, and you could just start to see my tongue swelling just a bit, but I didn't think much of it. Until my breathing became shallow and my throat started feeling like it was closing in. *caugh caugh* still couldn't breath, throat still feeling like it was closing. Maybe you should go take a benedrill, my mother told me.But see I can't swallow pills so I stayed put until she shoved it down my still closing throat. Soo umm I guess I'm allergic to cinnamon now..

     Sometimes life is all about letting go and trying new things. Like not worrying or just not caring (unless it's important than you should care.) You see that girl behind me. Her name is TooClazzy. Okay that's not her name, but ya'll don't really need to know it. Anyway she's one of my besties who has a great sense of humor. She always made fun of my new product Dex4. I bought it one day while shopping and decided it might come in useful for band camp. Today it did. On the bottle it says boosts lows fast and boosts energy. Well, I was low... like very low and when you're that low you tend to get picky about food (or at least I do). So when I was sitting on the field with a 38 I opened up the bottle and began to sip, it wasn't that it tasted bad, it just didn't taste like I wanted it to at that moment so I went back to my juice box. Well TooClazzy came over and was like hey that boosts energy? Can I have the rest? And I was like I really don't care. She thought it was the greatest thing EVER. It was seriously funny and made me laugh which is good when you're chillin at a 38 in the middle of 110 degree whether OUTSIDE!!

What ever happens...
always keep your head up and your smile on (and if you're me... stay away from cinnamon),
Ellie <3

Monday

     On Monday I have an appointment with my pediatrition to talk about our "next step". I've taken so many steps in the past couple of months I don't even want to think about this one. I want definitive answers as to why, how, and what to do next and my mom wants the calls from the superintendent at the bus depot to have to stop calling her for permission to let me off the bus with a blood sugar of 40. We are hoping they order two tests the glucose tolerance test and a mixed meals test. Reactive hypoglycemia was what they said I have, but they never gave me many answers after that. They are now looking back through all the negative tests, my symptoms, and some other things and realizing I could have GSD or I could just be dealing with a bad case of reactive hypoglycemia. At this point its all up in the air. Lows are getting scarier and I'm getting more anxious for answers. So Monday is the day. Wish me luck.

Keep your head up and me in your prayers,
Ellie <3

Welcome To The Team

This is Herman. Well... that is not Herman, my Herman looks exactly like this, but he's tucked away nicely in my unicorn skull bag and will be resting there until midnight tonight when I pull him out to test again. I got him about a week ago from a fancy place called Walmart and got him all gussied up and had him meet the nurse and the doctor and all those fun people and then today got to test with him for the first time!! It was a beautiful 107. I LOOVE Hermin. He's skinny and one of my favorite colors, and he's everything a person who has to check their blood sugar would want. The only thing I don't like is the lancet he comes with, but there's an easy fix to that. I use my old lancet the Multiclix lancing device. I love that it has 6 needles in one drum and I never have to see the needles! I also don't like the case, but really who does? So that's it. I will be posting a vlog sometime soon to properly introduce my Herman. But until then I guess you'll just have to wait. :)

Keep your head up and your blood sugar in check,
Ellie <3

The Silence Settles

I'm not one to dwell on what happened before, but last night I MUST tell you about. I smacked my hand head on with a flag at guard and might be down for the count for a while. My guard instructor never sends any one home during practice, but as soon as she saw it she told me to go call my ride. I'm in a brace with a swollen arm and 4 bruises for the next couple of days. I wanted to let you know there might be silence on the blog for a while as I try to get this healed before the first competition next week. I love you all!! Be back soon.

Keep your head up and the tylenol close,
Ellie <3

Things To Keep In Mind When Going Camping (Hypoglycemic style)

In my adventures of camping last weekend I found some new information that I feel the need to share with you all...
-first always check before you ride!! Call me a dummy for just now learning that one, but hey gotta catch on sometime.
-I carried a juice box and a granola bar in my jacket for oops that dropped fast emergencies. Only had to use the granola bar once, but it really did help.
-Always let some one know where you're riding especially if you're riding alone. I was gone often alone. I've got a really good sense of direction so my parents were never worried about if I was going to find my way back I was more worried if I would still have that sense of direction if I were to go low... turns out I do.
-If you're going to dance around the fire like a maniac to Black Eyed Peas you better make sure your phone is safely secured. My dad's phone fell in the fire... surprisingly it lived to tell the story.
-If you got a new helmet for Christmas make your cousin go get his own he will fall off a hill and fall off the bike. (I mean I'm glad he's okay, but I was worried about my helmet... surprisingly it lived to tell the tale too.)
-And lastly if you're like me and you find yourself racing a train on foot (from a safe distance) just to see if you can keep up make sure you have good shoes on. Mine flew off and I almost sprained my ankle.
Well that's all the updates I have for now. Be Safe And HAPPY NEW YEAR!!
Keep your head up and your helmet safe,
Ellie <3

My Story

A few things you should know... 

• the camera was sitting on top of a klenex box on top of a stool on top of my bed, that's why it shakes every time I move... sorry. 
• It took 10 takes to get the index card part right. 
• I did stop shooting the video mid-way to correct the low. Now you know I'm seriously not lying when I say I feel absolutely nothing. 
• And on the last index card I forgot the s in thanks. As much as I would love to blame the low I can't, I mearly just can't spell.

So with out further ado this is my story. 

Keep your head up and your camera steady,

Ellie <3

My View Of Yesterday :'(

 This was yesterday. It started at 9:30 and hovered between the 20's and the 40's til about 1:00 in the afternoon where it finally hit 82 and stuck there. I felt like I was a character from Hangover this morning when I woke up. Just the joys of living with this. I've got a cardiology appointment tonight so we're gonna see what he thinks I'm dieing of. Please keep me in your prayers.

Keep your head up and your sanity intact,

Ellie <3 

Adding To The List

Went to my first endo appointment today... It went okay. We're adding more tests to the lists and some more random stuff too. Here's what I'm up to now.

-cardiologist on Monday
-MRI brain scan was ordered by the endo this morning to look for SEIZURES!! (umm yeah that freaks me out a little)
-if neither the endo or the cardiologist finds anything I'm off to see a neurologist.

All over the Christmas break. I'm glad we're taking a step forward in the right direction, but I'm upset it's ruining my Christmas break and I'm scared. None of my friends really know what I'm going through and someone who is supposed to be like my best friend was telling me all these scary things about seizures. Even though the likely hood of me having seizures is small and limited it still scares me to think about. I guess it's back to the hurry up and wait game. Merry Christmas guys!

Keep your head up and scary thought out of your mind,
Ellie <3

UPDATES!!

Visited my doctor today and we reviewed our attack plan for the causes of all the low blood sugars. Even though I'm labeled as a hypoglycemic we're really not sure what's up. So this is our new plan of attack. I got a refferal to see a endocrinologist and a cardiac specialist. The endo is pretty much self explanatory, but they are worried that my constant state of dizziness is due my heart having an extra beat or some shiz like that. We are waiting for my refferals to be cleared with my insurance and then we'll go from there. At this point we're looking at a few blood tests from the endo and possibly a 24 hour heart monitory thingy ma bob to watch my heart rate. I don't know. Anyway. That's my update on the doctors. Please keep me in your prayers as I hack my way through this.

Keep your head up and your holiday season merry,
Ellie <3