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 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 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

Partners In Crime

This is my best friend:

She's the bestest friend a person could ever ask for. She's always there to make you smile when nothing goes the way it should. She and I are polar opposites yet exactly alike all at the same time. She's knows what to do when I fall and how to pick me back up again, both mentally and medically wise. And she's got the most amazing personality. She's my best friend.

This is her and I camping:

                               

We decided to go camping one weekend. Our parents okayed us going out alone, although I'm pretty sure my father was on top of a mountain watching up all night. It might have taken us 45 minutes to start a fire and we might have gone to bed at nine, but it was fun. And being with your best friend means having fun just means more memories to last forever.

We've also done a few dangerous stunts:

We were breathing fire out of our mouths, but we were using corn starch, NOT ALCOHOL!! Just thought I'd throw that out there. 

Now, we of coarse did this with the supervision of my parents and the permission of her parents. But she is a thrill seeker and I don't think I would have stepped outside of my comfort zone if it wasn't for her willingness to torch her eyebrows, I say that in the most figurative way.

She's my best friend and I don't know what I would do with out her. She's ran from one end of the school to the other to get a wheel chair for me because I was about to pass out, she's stayed up countless nights with me because my blood sugar was to low to fall asleep, she's my bestest friend in the entire world and I would be me without her. And I wouldn't hesitate to return any of the favors she done for me. We're two peas in a pod who hate high school and love playing with fire, we're inseparable. She's my partner in crime and I just wanted to tell her thanks and maybe remind you to tell whoever your partner in crime maybe the the same thing.

Keep your head up and breathe fire,
Ellie <3

I'm A Little Stuck

     I woke up last night at 10:15 and I had no clue where I was or who I was, I could feel my legs but the numbing sensation in them was freaking me out, my head was pounding and the moon light from my window made my head hurt worse, I was nauseous  dizzy, confused and the balance in my body was zero when I stood I fell back to the floor. Now looking back on it I probably should have gone to the ER, but at the time I didn't know who I was. The worst part is I remember it. I wasn't low, I'm pretty sure my mom checked that. I just wanted to sleep in the bathroom because like I said I felt so sick and I wanted a cool washcloth. I got out of bed and fell back to the floor (gracefully I hope). While I was lying on the floor face first I realized that I was in my own room, I remember everything. I got up again and used the wall to help me balance all the way to the kitchen. How I made it there I will never know. My mom came out to ask me if I was okay and I stood in the kitchen hunched over with a hand on the counter and the other on my forehead and I started sobbing. I was embarrassed, scared, confused and super spinny. She escorted me back to bed and gave me some Tylenol. I couldn't communicate to her what I was feeling. I couldn't tell her that all ten toes were now nonexistent  that the hot flashes were getting worse, that I woke up not knowing who or where I was. She stood there for a few more minutes and then left me with the dog who didn't leave my side the rest of the night.
     This is has been going on for the past month. Sometimes it's linked to blood sugar, but most the time it isn't. I've seen my doctor again and he referred me to a cardiologist again who literally asked me why I was there. None of the episodes look like heart problems. Everyone thinks that these are mini seizures. They think there is something wrong with my brain and the way it sends waves or something. They also think that if it is seizures my blood sugar could be effected when my brain waves are interrupted for what ever reason. I'm so confused and every appointment is just another dead end. This is all starting to get really frustrating and discouraging. It's not even the fact that I'm having the episodes, it's the fact that when they do happen there's nothing I can do. I just have to ride it out and hope it turns out okay in the end. Which sucks big time because I feel like hell when this happens. Do you have any suggestions on any of this? Because I'm stuck.

Keep your head up and always try to remember where you are,
Ellie <3 
P.S Just for laughs video: 

  

The Polar Express

     The holidays have always been my favorite. My family has so many traditions that you can't help but smile at. One of them is going to the Polar Express in Ely, Nevada the first weekend of December EVERY year. This year we had a group of 23 that met up and dominated the small town all weekend. It was fantastic. Here are just a few pictures from the weekend, more may come soon. I hope you enjoy the laugh. :D 

These are all the "kids" that were with us at the Ely craft fair. The oldest Patrick pointing at Santa was trying to tickle him, Santa wasn't to thrilled with that though. 

This is Victoria, Taylir, and I waiting to get on the train to go to the North Pole! 

This is my Father's Maybelline look as he calls it and a creepy statue behind him, I mean look at the smile on that guy it horrible.  

Cutting down our Christmas tree in the fridged cold... 

Some family members and I :) If you look at the girl in the yellow we have matching PJ's cheapest  pj's I've ever bought. 

Our Christmas card picture this year. Aren't we adorable?

The Polar Express is part of our Christmas tradition, what are some of yours? Merry Christmas season everyone! Keep your head up and the Christmas spirit alive,

Ellie <3

The Art Of Going To The Store For One Thing And Coming Back With Four Other Things

"Moooooom I don't feel good." I said as I laid down with my cheek against the kitchen tile.
"What's your sugar?" She asked only half paying attention.
"Do I look like I care what my number is right now? I told you I don't feel good." I huffed laying my head back down.
"Go check, I think it might be useful." *unzip the ugly a$$ black pouch, slip strip into slot, poke finger, flinch because you hit a weird spot on your finger, wait for the five seconds to be up.* 66.

See that grey dot? Yes, that would be where I pricked today.. -_- 

"Mom I'm almost out of strips and I've got a lot going on this week." I huff again except this time while drinking juice.
"Maybe after you eat your dinner you can go get yourself some." She said half sarcastically. So after dinner I got my butt up to go get more strips from Target. I walk straight over to the pharmacy... I mean of course they were closed it's labor day, I really should have thought that one through. But, then I thought crossed my mind. I'll get some ice cream. So I walked to the back of the store and grabbed some ice cream, and then as I was walking back up to the front I remember "oh silly me I need a toothbrush because I acentically threw mine away this morning." So now I have ice cream and a tooth brush then just as I was about to check out I decided I needed an Itunes card because Fun. had a new song out that I NEEDED to get. So now I have ice cream, a tooth brush, an Itunes card, a pack of gum, and NO STRIPS!! Hmm I suck at being a one track minded person. This is why I don't go to Target with money.

Keep your head up and your tooth brushes OUT OF THE TRASHCAN,
Ellie <3

P.S I found this on Facebook today because Lord knows I'm not addicted to that.. I though I would share it with y'all because really it's quite funny.

Yup, you know you wanna smile now. :) Have a good short week everyone!!

These Questions

Do they know?
Is the orange dust all over me?
Do they think I'm doing drugs?
Do they think I'm a fat a$$?
Do they know this is all to keep me safe?
Do they know I have no intentions of bombing this or any other airport?
Do they know?

Do they know? That's a question I don't think I'll be able to ever answer 100%. At the beginning of ninth grade when this was all starting I was eating so much more, and I thought I only needed sugar, so I would always carry extra brownies. I wasn't educated enough to know what was going on in my body or how to educate people. And now with all my tests coming back negative, I still don't. But, at the beginning of all this I was always called fat because I was constantly eating, and I was called lazy because I would never want to move (turns out my brain wasn't getting enough energy I guess??) I was always having to listen in on people's conversations because half the time they were about me. It hurt, one of the campus security at my school kinda helped me through a lot of the bullying and always checked up on me. If he saw me crying he would tell me to go wash my face off and then let me sit and recompose myself and then would walk me to class to make sure I wasn't marked late. Now as I've grown into what ever this is I've been able to educate more people and show them I'm only doing it for my health and that it's way better to be fat and safe then skinny and always on the ground. I've grown into being able to take the stares and the uncomfortable silence in those five seconds as people look over my shoulder to watch the number pop onto my screen. I still ask myself the questions of do the think my glucose tabs are drugs? And I've also learned that when you can't beat 'em join 'em. Someone asked me if I was doing drugs while I was chomping down some glucose tabs and I answered simply, yup I'm a druggie. They didn't believe me so I told them what they were and no we both refference to them as drugs.
   My friends have also learned a few things too. They don't ask as many questions either. They've also realized that part of what ever this is, is my "quiet days", the days where I just don't feel like talking or being awake or comprehending anything. They've learned that it really helps on these days if they fill me in on the notes that I zoned out for accidentally. Or just letting me be. This thing doesn't just live in my life, it's snaked its way into my friends, family and teacher's lives too. I guess for now I'll keep asking myself these questions, learning, educating, and growing. And maybe one day there won't be a need for anymore questions.

Keep your head up and keep growing,
Ellie <3

Getting Through April

April. Not even half way over and I've already done so much. It started off busy and out of town, leading into my glucose tolerance testing (which all came back wonderful so I guess I'm a medical mystery??) Which is when we took a mini field trip to the new Hoover Dam bypass bridge, which is about and hour away from my house. 

In between Arizona and Nevada. 

Back on the Nevada side. 

If you can see him, he's a big horn sheep down by the water. 

 Then came Elizabeth Keane Day. When I received my big Prudential Spirit Of Community award in 2010 the city counsel dedicated April 7th as Elizabeth Keane Day. It was only April 7, 2010, but we like to celebrate it every year... WITH CAKE!!!

 Then came Easter. As always we have a HUGE Easter party with AMAZING food after church, and boy was it delicious!!

Hiding Easter eggs! 

The Easter egg finders. The hat on my head doubled as an
Easter egg basket as I was to lazy to go and find a real one.

 Next came the TourDeCure! I was soo excited to be riding in the 15mile ride. It was super rainy and cold in Vegas that day, and it was a little annoying because it NEVER rains in Vegas and it just decides today is a great day to poor. But, luckily the rain held out and it was beautiful riding weather! It was also really cool to meet people who had diabetes, I've never seen so many insulin pumps and people checking their blood sugar in one place. And it was neat to be able to encourage them in their fight.

Hoola-hooping before the ride. 

At the starting line. That's my nervous smile. 

Off we go! 

Coming up to the rest stop after a super long hill! 

Power drinking water so I could finish the last 7 miles! 

After the rest stop up the next part of the big hill! 

Coming up to the finish line and passing the big red truck.

Crossing the finish line!!
Huge smiles all the way!!! 

Meeting Monica Jackson the Fox 5 news anchor and telling
her I saw her commercial for this even and that's what made me
decide to sign up and ride. 

Doing a sound byte for the Monday morning news on why I decided
to ride and why I was so crazy for not having any training and just
doing it. 

The celebratory Outback lunch. 

It was amazing!!

That rounds out the first half of April. Now we're at the final stretch of school, I get my licsence in a month and turn 16, start my summer job, and more! I'm so excited. Hope your April is filled with laughs and great numbers.

Keep your head up and push on,
Ellie <3