Adventures of the trials

There's not much I need to say except watch and enjoy because its all in the video!

Click on the link to watch my youtube video!

http://youtu.be/9f8358rO7n8

The Biomarin Advisory

This past weekend I attended the Biomarin Advisory for the current study I am in! And I've got to say I was a little nervous about going to this meeting but once I got there that feeling quickly went away. Saturday my mom, brother, and aunt Michelle all flew out to San Francisco. Once we got there we immediately changed and went out to sight see and meet up with Tracy to
go to the mirror maze. Which so much fun and super cool, it was only like a 10 minute activity but it was still fun and a it's always awesome seeing Tracy! After that we had to rush back to the Omni Hotel, which was absolutely gorgeous like Titanic beautiful, anyways we had to take a public bus through China town which if you ever have it's definitely experience in itself but it was definitely interesting! When we got back we went and met for registration and a casual meeting at like 5:30-6:45 where we met the people we would be talking with and played an ice breaker game but everyone just ended up mingling in the end but it was nice! After, we went to an Italian dinner with everyone and then we went to bed, in one of the softest bed I've ever slept in!!! Day 2: We all woke up nice and refreshed! Speaking for myself of course! Then got ready in our business casual attire for a long day ahead. The first introduction meeting was about 15 minutes long and then we got to break out into smaller groups split between the teen, the adults, and the parents. So once they got done it was time to really get to business, all the teens went into a separate room and they began to ask us questions like, "what things do you like to do? What's something's about you that you want us to know?" Of course I admitted to my deep love of Justin Bieber, writing, and shopping but what's new?! Next they asked questions about the study like, "have you had any side effects?, what has your experience been while doing the study " and other questions to follow. I was very happy that Dr. Harmatz convinced us to go to this meeting because I met a lot of new friends and got to get my opinions out about how I feel. I met a girl named Sarah who is 15 and loves Harry Potter and really doesn't like Justin Bieber at all... Buts that's okay she's still awesome! I also met a girl named Laurie and she loves Justin Bieber as much as I do, and she was so pretty and super nice!!! I'm so glad we met and I really hope to see you guys again!!!

Do's and Don'ts of traveling

As you all know I fly somewhat frequently, you could say and I am kind of a traveller so I have a bit of experience when it comes to airport and airplanes. I wanted to give you guys some Do's and Don'ts so your travels go a bit smoother!

DO'S
1. Always fly SouthWest Airlines - I am probably a little bit biased when it comes to airlines because its pretty much the only one I have flown with more than once and its been fun for the most part with a few minor incidents ;) But if you're not flying in a private jet or first class take SouthWest they are the best!!!

2. Dress comfortably with style - Besides the fact that you will be sitting in a seat for at least the minimum 45 minutes on a plane without delays you should really consider this tip because there is nothing worse then wasting a completely adorable outfit sitting on a plane. So might I suggest yoga pants, leggings, or a cute tracksuit or jeggings come on girls comfortable is the new black give it a try!

• Don't take this to literal and come in your PJ's its only cute if you're under 10! Also be careful what you wear because I always see "What not to wear " moments, where are Stacey and Clinton when you need them!
• Only wear heels if you can run in them because there is a chance you can be running late!! just something to think about.

3. Keep your bags light-Bags are total pain in the butt if you don't have anyone to carry them for you, so I would limit it to one bag and try to keep it light. Also if you are bringing a carry on make sure it is small enough to fit up above or by your feet and if it doesn't you might have to check it which is a pain in the butt too!

• For the people who don't know what to consider a carry on, it should be able to fit in a bin and if you have a hard time getting it down the narrow aisles its probably to big!

4. Make friends with the flight attendants (not enemies)-When first getting on the plane make sure to observe the flight attendants but don't be a stalker or a creeper just pay attention 9/10 times they are super nice and friendly but just in case be cautious. Try to be fun on the plane after all you will be thousands of feet in the air with these people might as well make friends along the way. It could be pretty fun if you just let loose! They give you extra goodies if you're cool enough.

5. Blankets are a must- Blankets are a must for me when traveling because I am either cold or need a pillow and my blanket is just something that is light weight, soft, and easy to fold up.

DON'TS
1. Avoid the middle seat at all costs-I am always stuck with the middle seat and it really isn't that fun luckily I usually know the people on both sides of  me so I can lean on them but if you get stuck with the middle seat you will usually have the least amount of room and won't have any arm rest, which stinks let me tell ya. So avoid the middle seat at all cost unless by chance it happens to be someone like Justin Bieber haha ;)

2. Get on the plane without full battery-When all else fails and you are tired and just want to get home, you go to put in your earphones and turn on your phone but its dead the dreaded empty battery picture, worst... thing ...ever...( I'm totally being dramatic). Thats why when your waiting for your flight make sure to find an outlet and plug in. Just in case bring something else to occupy your time or try and fall asleep. The plane is a good place to just take time and think about things that you don't have time for usually.

3. Eat anything that will cause stomach problems-Let's not ignore the obvious we are in tight spaces with no windows to open so therefore try not to eat things that can make your stomach not feel so well. Stay away from the greasy stuff and whatever else may upset your stomach please for the sake of everyone else on the flight. Think before you eat!

• Don't sit near babies if you can't handle the occasional stinky diapers. Hey give them a break you were a baby once and the moms do the best they can but they can't help it!

4. Bring any expensive liquids with you(unless under 3oz)-Its the worst when you have to throw out a drink you just bought but its even more worse when you have throw out your favorite scent of perfume or lotion! So keep it light and small or else it goes in the garbage no exceptions trust me we've tried!

5. Make enemies of the flight attendants-Making enemies with the flight attendants is one of the most awkward things ever especially if you are sitting up front and must make eye contact occasionally or over hear them telling the other flight attendants what just went down. Hey everyones human and gossip is contagious;) By chance you don't get along with a flight attendant or whatever the case may be just chill and get home thats all that matters unless you're trying to leave Hawaii then just stay a little longer!

• You can be kicked off for a bad attitude so just be nice!

A little ink never hurt nobody

Surprise:
So I did something very unexpected and I got a TATTOO! yep you just read that right a TATTOO! Now anyone who knows me knows that I used to be against getting a TATTOO but over the past few years things changed and so did my outlook on TATTOOs, WAIT A MINUTE, hold your horses this doesn't mean I am going to become addicted and get them everywhere but I think that one or two are just fine for me! I was very scared and nervous but I did not want to back out because it was something very important to me and let me tell you it was all in my head the tattoo didn't even hurt that bad!!
Experience: 
Basically I was suppose to get my tattoo on Saturday but I didn't because I didn't have my birth certificate on top of my ID and my mom's ID(who knew!) so my mom got her foot tattoo and I had to wait until the next day which was bad because I was so nervous that I couldn't eat nothing  or focus on my homework either!!! So Sunday came around and I was nervous but so ready to do it. The moment came and I got on the table and the nervous tears began but only lasted until the tattoo artist began and thats when I realize I was totally over thinking this whole thing and the excruciating pain was not excruciating at all! But was heart was pounding out of my chest and luckily I had my mom and my cousin Traci there to hold my hand and experience the whole thing!
Reasoning:
I got the tattoo "Believe in Yourself" because I think it's something that everyone should always do and I think that I have forgotten to do it myself recently more than ever. I have been caught up in trying to meet everyone else expectations in  me and trying to be good enough for everyone but me and wanting everyone to believe in me but I realized everyone already did the only person who wasn't was me! I then realized it doesn't matter how many people believe in me if I don't believe in myself then there's no use right? I also realized I don't need to work to be good enough for anyone but me. I guess I was waiting for people to stop telling me every little thing I need to improve on and just say "you are trying your best and your best is good enough right now and you are good enough" but no one did so I thought I needed to do more but I am glad to say I was wrong! I just needed to believe in myself and stop worrying about pleasing everyone else because I can't but I can please myself! Oh and the three doves symbolize inner peace, tranquility, and hope. So I hope you like my tattoo and if you don't that's ok too because I LOVE it!
Thanks:
I can't end my post without saying thank you to Modern Ink and Thomas the tattoo artist who did my beautiful tattoo and my mom and Traci for helping me do this and everyone else who believed in me and helped me believe in myself I couldn't possibly name everyone but I hope you know who you are!!!

The list?!?!

So one day when I was at my grandma's house during the summer time and I was bored, there was this pad and paper sitting in front of me so I started doodling silly pictures. Then I decided to make a list! I thought about how cool it would be to have a list of my wildest dreams that I wanted to accomplish in life! I like the idea of one day taking it out and realizing I crossed a goal that I've had for a long time off because I completed a dream that I always wanted to happen. Last year I was struggling through life at the time and writing this list helped me believe that one day it's going to be worth it and it will get better that life is hard at the moment but my future will be bright. The list is simply a piece of paper that could essentially just mean absolutely nothing or it could be the one thing that when i look back at my life I say "I knew things were going to change" but it doesn't matter because my thoughts are forever changing and nothing is ever set in stone. My list is truly what I want in life without a doubt if nothing else happens I want these ten things to happen. These 10 things are more than wishing for a million dollars or having the perfect future they aren't things that could be reached in a day or even a year but I know they will be reached someday. Some of these things are completely ridiculous, don't make sense, and just a little crazy but that right there is my life story so why not? I really don't have a number order I just wrote them down as they came to mind, life has no order so neither does my list. Here it is...

Change A Life- I want to impact someone's life the way mine has been impacted, I want to influence people to be better and inspire them to try harder and help them accomplish their dreams.

Meet Justin Bieber- what kind of teenager would I be if I didn't throw in meeting my idol/ obsession/ teen heartthrob come on you know me better than that! I'm still a teenager and I had to put at least one crazy goal in here.

Make A Difference- I want to make the world better for more than just because it sounds good but because it needs to be changed.

Start A Charity- I love charities and having my own would be amazing. I'm not exactly sure what I want yet but I know I will figure it out.

Make A Lifetime Friend- Having and being a lifetime friend is something that I think everyone wants, some who is there for you no matter what and doesn't have to be by your side 24/7 to know how you're doing. Someone who is just there.

Find Out Who I Am- It's no secret that once you become a teenager everything changes and there are things that you need to figure out so that's what I plan to do.

Write A Book- I really want to tell my story to people by writing a book because I know that there are people who may be going through the same things I have and don't know what to do so they can read about my journey and it may help them with theirs.

 Make My Dream Happen- I am not exactly sure what my dream is but when I know I will make it happen.

Find My Purpose- everyone has a purpose thats the easy part but finding it is hard. Knowing is half the battle right?

Be Happy- I want to look back on my life and be able to say it may not have been the easiest but I am happy with the way it turned out and I wouldn't change a thing.

Honestly, like I said before, this may just be a small piece of paper with scribbles and doodles on it that mean absolutely nothing or it could be the one thing I have 20 years from now that is proof of my dreams and who knows I may have changed the world by then, written my book, and just got done hanging out with my BFF justin bieber;) who knows anything can happen. Just try and don't give up and if it doesn't happen then I've still have time:) Plus if I have time I would really love to go to the Ellen Show, that would be super amazing!

Goals of 2013

2013 is finally here and I am so excited for a new year! 13 is my favorite number so I figure that this is my year to make things happen! This is the year that everything changes and things start to turn around for the better, hopefully! Now everyone has their New Year resolutions like " not drinking soda" or " becoming healthier" but this is the year to change:) Change everything, find new adventures, and make dreams happen! The way I see it is things just have to get better so they will! This year my goal is to have fun and enjoy life for the crazy roller coaster it is! In years past I have been worried about what the future may bring but this year I decided to live for today because whats the point of having a future without the past that got you there. Let's just face it I have changed and in the last couple of years it been pretty big I would say, my past has been rocky at times with everything that has gone on throughout the years but I would still consider it to be life changing. So this post is going to be short and sweet like someone I know;) make this your year because I am going to!

Good news!

So I have some good news! As you know I have been participating in the enzyme replacement therapy in Oakland for about a year now. Yes it's been a year and a long one at that but thankfully all that dedication, commitment, and patience has paid off! I am officially on the drug 100%! Yep that's right I'm on the drug! It's reassuring to know that we are flying for a reason now! In order for you to see how exciting this is I have to tell you what I experienced through my eyes... So ideally every week my mom and I would wake up at 3:00am in the morning, occasionally Justin would come with but he wasn't in the study yet so he didn't have to come as much as me. we would go to the airport and get on the plane and go to Oakland for the treatment and then go home. Well that wasn't always the case. Actually it rarely happened, When I agreed to doing the trials I didn't know what I was getting myself into, I knew this was a commitment that I had to take because it could be one of those things that changed my life in a huge way but at the same time I didn't realize how much of it would consume my life and my families life as well. Being a teenager is hard enough to deal with but being a teenager with a schedule that some adults couldn't even handle is 10 times as hard. I didn't know I would be signing an agreement that I would always be behind in school, so tired that I could barely function, or miss out on even more of the high school events that I'm suppose to be doing right now. It wasn't to appealing to get needles every week either, but I did it anyways because who am I kidding it was one of those things where you couldn't say no it was just to big of an opportunity to pass up. Little did I know I would meet some of the most amazing people in my life, have some of the best moments ever, and have a few laughs on this long ride. I wouldn't argue with anyone who says this is a huge commitment, the study has challenged me every way possible physically mentally and emotionally too! It's draining, boring, confusing, sad, stressful, long, demanding, time consuming, painful, and so much more, trust I could go on forever;) but within all that we've became a family like I've said many times before in my blog, now I can't speak for everyone in the study but the Thursday crew has definitely become closer throughout our time together, we have laughed, cried, and looked at each other in complete boredom but without them I don't know where I would be in this crazy mess. Because of the study I've had to give up some of my perfectionist ways, which has been hard, I've had to accept I can't always get an A and that's ok because there are bigger things to worry about but some of that perfection is still in me( I can't just get rid of it over night;) I've had to sacrifice many many things that may not seem like big deals to many but they were to me. Things like going to midnight premieres and being able to say I sat there for hours with my friends or not going to the football games on Friday nights because I am to tired or just being a regular sleep deprive teenager are small things to some but those are the little things that make memories, right? Anyways my point is Oakland has made me miss out on a lot of things but it has also given me many things as well like going to the JB concert there and many other things:) So through it all, the ups and downs, the twist and turns , and the loopty loops I am on 100% drugs in a good way of course! Hopefully they show some improvements so wish me luck!

It's ok...

Sometimes I just want to go to the airport, pick a flight at random, and just go without telling anybody. To go on a total adventure. To just get lost and find my way back, to just be somewhere where I can just breathe for few moments of pure serenity and then scream to the top of my lungs to get out all the anger, sadness, and frustration I've ever had. To go somewhere where no one knows me and be able to create a whole new person. To feel happy, sad, angry, frustrated , confused , and all the other emotions out there and not feel like its not okay to feel a certain way. Its really easy to get lost in life and it feels like everyone is moving at the speed of light, just moving on. But sometimes I feel like even though the days are passing I'm just stuck where I am and I can't do anything about it. But I have to because days are still passing... Its frustrating knowing the type of person I want to be and not knowing if I will ever be that person. So what do I do? There's no "How to find yourself book for dummies" or a " road map to the right path". So how do you do it? I guess you just jump right in and start figuring stuff out. That's just it life isn't just something you can exist in you have to live every moment of it and as much as I dislike this word life is just unfair at times. It's unfair I was put in this situation but it could be worse and at times I can't imagine there is anything worse because I only know what it's like to be in my situation but there could be and there is. If I've learned one thing in life it's that at times like this in moments of complete weakness that you find out who's there for you and little pieces of yourself are uncovered as well. If you really knew me you would know that as much as I try I can't hide a bad day and this post is on here because I promised I would be 100% honest with you guys. Today was a bad day but tomorrow will be better because Life is full of Good and bad moments and as much as I love all the good times, I know all of those bad moments are making me the person I truly want to be and if they brake me down in the process, it's ok because life goes on.:)

Something inspiring

In my psychology class we have just entered the topic of memory and to start off we watched Akeelah and the bee. Now every Friday my teacher Mr. Hardt tells a friday story that is pretty inspiring but this week he didn't, he gave us a slip of paper with this amazing quote on it.

" Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves; Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest within us. It's not just in some of us; it's in EVERYONE. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

I've seen this quote many times before because it happens to be my brothers favorite quote and until now I didn't realize how much it affected me. It's so true though. Everyone was born to be somebody, so why do we dim our own light? Why is it so hard for people to let go? I know for me it's a state of mind type of thing, I am definitely my biggest critic. But aren't we all? Why is it so hard to sing in public but so easy to dance in the rain?  We all wish for success in some way and if everyone just let go and be the way they are when they are home alone then the world would be filled with characters instead of people pretending to act like what society calls "normal and acceptable". I am guilty of acting the way society thinks is acceptable and I know that. It's hard to be who I really am out in the real world because what if I am not accepted and I know I am not the only one that feels this way, everyone  wants to feel accepted its natural so why do we make it so hard?  The simplest things in life that cost no money are the hardest to achieve. It shouldn't be easier to pretend to be someone else but it is. One day the world is going to change, I just know it, I mean it has to we can't continue to live the way we do. For someone who is constantly viewed as different just because I look different it gets hard. It's like when you walk in to class late and as soon as you open the door everyone looks and stares, that's how my whole life has ever been . People ask all the time, " how do you deal with the stares?" Well as hard as I try to ignore them it doesn't always work so what do I do now? Huh... My point is we make this world what it is, I know we blame the media and celebrities for things that happen but who's choice is it to follow the trend or make a decision? It's yours, stop complaining and just do it...so be who you are and don't dim your light for anyone. Listen to the one of the greatest authors of all time

Decisions

Decisions. I've made countless decisions for many years and I'm sure you have to. I mean we make them everyday what to wear, what to eat and everything under the sun. I think it's absolutely crazy how many decisions that we make everyday, I mean I am the type of person who likes to think about my decisions fully and try to think about the outcome and sometimes a little to much. At age 3 I made a decision that I didn't know I made at the time but It had a lot of relevance, you want to know what it was? It was that I would never loose my favorite pink crayon and you know what? I lost it. And you're probably wondering what this has to do with anything but it does because when I went into high school I made the decision that I wasn't going to loose who I was and went in thinking I knew everything about myself, so naive but so true... Sadly I lost myself completely it was like Alice in the wonderland... I fell down the hole and I just kept falling. It was the worst feeling I've could've ever felt. My 16th year was the hardest year for me, it was awful, that was the year where I had my big neck surgery and started infusions. That year I was definitely tested and for a little bit I was broken... Yes broken and I didn't know what to do, I felt so lost and so alone at times. Most nights I would cry myself to sleep knowing that the next day I would have to try 10 times harder than everyone else and know at the end of the day it wasn't good enough... While everyone was telling me I was so strong and doing such a good job, I didn't believe them. I was so stressed out and frustrated at the fact that I couldn't handle it, I couldn't handle all the pressure, all the make up work, the bad grades, the traveling and letting people down. At the time one of my worst fears was letting people down. I was asked constantly " what I needed to make this easier?" And unfortunately it was my first time going through this and I had absolutely no answer... I didn't know what was going to make my life easier and at One point there was nothing that could help me in my mind. My 16th year I had changed and it wasn't something I could've hidden. The feelings were overwhelming and for the that year I was miserable but at the same time I learned some of the biggest lessons that if I didn't go through all those moments those lessons wouldn't have been as important to me. The lessons were

1. Life is... Life is a roller coaster and now matter how high or low you are or how sick and tired you feel it will get better because no matter how far that roller coaster is from the top it has to go up eventually.

2. I am not perfect and I don't have to worry about the expectations of anyone except myself because at the end of the day I am the one who has to look at myself in the mirror and smile about my decisions.

3. I am different and I need different help and its ok to get it.

And you know I have to put some bieber in here somewhere, so here are the words that helped me sleep at night...

Through the storm and, through the clouds
Bumps on the road and upside down now
I know it's hard, to sleep at night
Don't you worry
Cause Everything's gonna be alright, ai-ai-ai-aight
Be alright, ai-ai-ai-aight
Through the sorrow,
And the fights
Don't you worry,
Cause everything's gonna Be Alright,ai-ai-ai-aight
Be Alright,ai-ai-ai-aight..

The point of this post was that the decisions you make can effect your life in enormous ways positively or negatively and whether you know it or not the littlest things can change your  life so do whatever you want just know what ever decisions you make will make an impact your life and it will change. I am making the decision to be happy and ride this scary roller coaster we call LIFE :) So ride it with me and know everything is going to be alright;)