Peg Pal: My Experience

Tuesday, November 4, 2014

It has been a little over a year since I initially started my training and preparation for Peg Pal. The experience was a roller coaster and it has been extremely hard for me to come to terms with the outcomes and be able to share my experience with the world (nonetheless, with even my close friends). But I think I'm ready. I think I'm ready to share my experience because I want to help people who are undergoing the same thing I did about a year ago, or similar challenges. It may be lengthy, but I promise it is worth it and can teach you so much about challenges in your life even if you don't have a need for the use of Peg Pal.

As some of you may know, I have a genetic disorder called Phenylketonuria (PKU). This is a disease in which my body lacks the enzymes needed to break down an amino acid called Phenylalanine. Since this isn't a biology class, I'll quickly sum it up for you. My body cannot break down excessive amounts of protein. I can only take in about 10g of protein a day. Diagnosed at 8 days old, I have never had meat, milk, a hamburger, a ham and cheese sandwich, or even peanut butter. You name it, I probably can't eat it!
I remember the day I got the call from my dietitian saying that I was eligible for a treatment drug in it's study stage. I was at school in the courtyard where everybody hangs out between classes and after school. It was right when school got out and when I heard the news, I couldn't believe it. I shared the news with my friends and they were so happy for me. In our minds, I had a cure! This might be able to cure me and I could possibly start eating macaroni and cheese and maybe even a peanut butter and jelly sandwich! It sounds so silly, I know, but to me this was life changing news. We set up my first appointment and the journey was finally beginning!
To make long stories short, I was up at the hospital every Thursday going through basic contract signings and training for the treatment. The treatment was an injection of fluid by needle into the abdomen or upper thigh. The first few weeks, my nurses injected me with VERY little fluid. .02 milligrams and what not. I was not to self inject yet, because I was still undergoing training for it. As the weeks went by, I was beginning to practice injections on oranges or bananas just to get the feel for the shot. Finally, the day came when I was to make an injection myself into my very own thigh. I've been poked and prodded at with needles at hospitals for blood since I was 8 days old. Those are memories that will never fade and will always be fresh in my mind. But this was different. This was ME, with a big old needle, injecting fluid into my body by myself. It wasn't a blood draw, which is what I have been used to my whole life. It was an injection! The thought of this was so scary to me. My nurse, Tami (who you'll hear a lot about), was so supportive and I wouldn't have been able to do it if it weren't for her. For a few weeks I remained doing my own injections at the hospital until it was time to take the equipment home and do it by myself! They sent me home with an EpiPen just in case something went wrong. I was so excited to take my treatment to my grandparent's house and show them. I knew they would be so proud of me, and they were. It was a really good feeling; making people proud, including myself, and knowing that at the end of this I might actually lead a "normal" life.
Home injections went great for a while. I began doing multiple injections per week and things were going smoothly. I went to my weekly visit one week and my doctor decided it was time to increase my dose of drug, meaning injecting more of the fluid. I was excited to see my levels change and to possibly be able to eat things I'd never had! I went home with the changes to my drug intake with a positive attitude. But things changed quickly after that.
One Friday, I was at the Halloween dance for my high school and I started feeling sharp pain and tingles and warmth on my stomach where I injected the medicine that day. I panicked! I went to the school bathroom to check on it and this is what I saw:
(no one should have to look at how white my tummy was right here... sorry guys)

I sent a picture to my study director, Mary Jane, and sat in a bathroom stall and cried. I felt so weak and my stomach was burning and just getting more red by the second. That night was scary and a definite realization that I can't expect this drug to have no problems, because it WAS in it's study phase! I was the lab rat being paid to test a drug. And that's what I felt like that night; a little white rat scurrying around not knowing which way is up.
The spot faded and got better by the time I was to give myself the next dose. But this time, it was just a worse reaction than the last.

The reactions kept happening. My joints started to become just a little bit sore. It bothered me a bit when I used stairs. But it was nothing I wouldn't endure to be "normal". The reactions started staying longer than a few days, and I would often have multiple spots on my stomach and thighs from different injections on different days.

 My study director was concerned and watched me very carefully, which I appreciated so much! It made me feel cared for and not that bathroom stall lab rat. I was a person. We were expecting for the reactions to go away after a few weeks because my body was adjusting to this chemical that my body has never had before! I still had hope. Less hope, but still some hope. My reactions started getting worse and worse. My injection site began swelling a LOT and getting itchy and burning and tingling. My thighs and stomach were always burning and my joint pain began to worsen. It was quite a task getting from the downstairs main hall to the upstairs language hall at my school. My joints locked up and were not mobile. It wore me out to go up that flight of stairs and it caused me a lot of pain and some humiliation...
My skin started to look like I had golf balls under my skin. I wore long, baggy shirts so that my stomach bumps weren't visible as well as my upper thigh bumps. I felt hopeless and started to wonder whether or not this was worth it.

Then came the night I will never forget.
It was about 3 in the morning and I woke up feeling like I was underwater. I tried to open my mouth and take a breath, but I could not open my mouth. The slightest move of my jaw was the most painful thing I have ever felt in my life. I will never forget it. I wasn't getting enough air through my nose to be comfortably breathing and I began to panic. The first thing that came to my mind was "WHERE IS MY EPI PEN!!" My nurses told me to always sleep with it by my bed but I didn't take it seriously because I didn't think anything would happen to me. It's like the warnings on Tylenol that are like, "may cause fainting and internal bleeding". I thought, no way in heck this will happen to me! That only happens to other people. I went to get my phone from my bedside table and felt tremendous amounts of pain in every joint I used in that movement. I began to cry. I managed to muscle up the strength to grab my phone and text my mom. Even my thumbs were locked up, but I managed. She came into the room immediately and layed by me. She tried to rub my joints but it just made me cry harder. She must've felt so helpless. I didn't think of that in the moment, but looking back on it, I can't imagine what she was feeling watching her daughter go through this and not being able to do anything to help.
We came to the conclusion that maybe my joints were swelling up, so my mom went downstairs and filled tons of Ziploc bags with ice. We put them on my knees, my jaw, my elbows, my shoulders. Minutes passed and my joints became a little more mobile. I took some Tylenol and a sleeping pill and went back to sleep.
I had dance company in the morning at 6 a.m. I obviously couldn't make it. I couldn't even walk, there was no way I would be able to dance. But around 8 o'clock I started feeling like I just wanted to be with my dance girls. My mom took me to school and helped me walk in as I couldn't walk by myself. My dance company was working on a dance with a select few girls who had health problems and it was about overcoming these challenges we have. My group was rehearsing that dance. I layed in front of the room by the mirror, basically immobile and not able to move. The song that our dance was to was called Medicine by Daughter

"You've got a warm heart,
You've got a beautiful brain
but it's disintegrating
From all the medicine"

I layed on the ground and sobbed. My fellow dance girls were dancing and I was so stuck in the music, the words, I was living that song right then and there. My medicine was breaking me, it was destroying my body. The irony hit me like a load of bricks and I couldn't stop the tears from rushing down my cheeks. That might have been the hardest I have ever cried...
After the dance was done, the girls came and hugged me and I cried with them. That was one of the most incredible bonding experiences I ever had with my team.

(listen to Medicine HERE)

I was faced with the decision to either stop treatment or continue and hope that it begins to turn around for me. After multiple nights waking up not being able to move or breathe, I felt that I knew what I had to do. Needless to say, I stopped treatment. A lot of depression and sorrow followed that decision. I knew that this treatment was working for other patients, they were eating normally, their bodies were feeling healthy and they weren't having the problems that I was having. I kept thinking of that first day in the courtyard when I heard the words, "You are eligible for treatment". Those words haunted me for a long time. Up until even now, those words cut like a knife. Everything I had thought and expected to happen to me, didn't. I was more sick than I had ever been in my life, and this was supposed to be my "treatment". I was expecting to be cured, to have this miracle drug change my life and who I am completely.

I was wrong.

It's still so hard for me to accept that at times, and it still haunts me. However, as crazy as I am to be saying this, this experience wasn't all bad. I truly learned so much about myself through this process. Everything that was happening, all the things I was thinking, I kept it all to myself. I didn't even tell my boyfriend (we had only been together for like 2 weeks when it got really bad and I was NOT about to scare this perfect boy away). Everything was evaluated inside. I think of the extreme pain and sorrow I felt during this time and I am so proud of myself. I truly think it takes a strong person to go through what I did, and when I look back on it all, I am so proud of myself.

I also made forever friends through this. My nurses, my study specialist, my NP, my doctor, they became my best buds. They knew everything that was happening, they knew how discouraged I was, and they managed to put a smile on my face every time I walked into their unit. I will never forget when my nurse Tami was doing my blood draw. We had about 8 vials to fill with my blood and they were laying by me on my bed. My hands were becoming numb and I was starting to hurt, and finally we were done! I sat up, ready to eat (because I couldn't eat all day until my blood was drawn), and a tube came rolling off the bed. Tami looked like she'd seen a ghost. Her face was so serious when she said "Shit." It was so funny that I didn't even care if I had to be poked again- that moment made it worth it. My nurses were always asking how my boyfriend was, how my apartment hunting was going, they knew everything going on in my life and it made hospital visits not so terrible (plus they always gave me cookies and chips and soda and I got to get in the cozy sheets of a hospital bed).

(Mary Jane, Pam, Tami, Me, Clint, I can't remember the woman in the red pants' name I want to say it's Lisa, Dixie, Jonathan, and the man who checked me into the hospital... I want to say maybe Walter?)

I cannot believe my body went through what it did and came out of it all without any major damages. It is amazing how much our bodies can take. I know that I wasn't alone through this, despite how alone I felt at the time. God is my creator, He made me and He knew that I was capable to go through this experience. He was with me every step of the way, every tear I cried, every night I woke up thinking "Being dead would be better than feeling this pain". I grew so close to God through this part of my life and I am so grateful that He knows me better than I know myself and that He walked me through this brief time in my eternity that I didn’t think I would get through..

The point of this post is not to make you all feel bad for me. Actually, it is quite the opposite. I want my story to inspire. It doesn't need to be a PKU patient undergoing Peg Pal treatment. It can be anyone who is struggling with a time in their life. I want you all to find the tender mercies in your lives, like my nurses and mom were to me, I want you to all focus on the little things that happen throughout these challenges that make everything seem okay, even if it is just for a brief moment. These things are SO hard to see when you're in the midst of a challenging time, but I know that if I would've been looking for them at the time, I would've recognized them and been able to be so much more positive through my trial. FIND YOUR TENDER MERCIES. Even through the hardest times of life, there are always things that remind us of how lucky and blessed we are.
God loves us. I often hear a quote, "God will never give you anything you cannot handle". I am going to tell you that I strongly disagree with that. I can guarantee you God will give you challenges and hardships that you cannot handle alone. I couldn't have gone through such a trying time in my life without His hand. I did what I could, I did everything I could to endure it. He took the rest. God lifted the remaining weight of my burden and carried it Himself. That is so much more than even a tender mercy in my life, it is a miracle; an absolute blessing beyond comprehension.

Look for the good in your life, even if you feel there isn't any. There is always good, there is always light. It is OUR job to find it. And what a talent that is. There is no greater joy than finding the good in the hard times in life. That gift will stay with you for the rest of your life and guide you through the many hardships we have to come. The burden will be light if you let God in. He will carry what you can't. Let Him in.

Sorry about this novel of a post. I've been waiting to write this for a few months but haven't been ready until now. I hope you all share this with your friends and family. All I want is for my experience to help one person. Even if it's just one person, it will make it all worth it for me to know that this can benefit somebody.
Thanks for reading, and remember to share this with those who may need it.
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**If you are here researching about Peg Pal and considering entering the study, DO NOT let this scare you! This drug has worked for so many people and has made such an amazing difference in their lives. Do it! It was an incredible experience and you will always be able to say that you made a difference in the scientific study of PKU! :) We are so close to a cure, people! So close!

new design/halloween!

Monday, November 3, 2014

So it took me forever to choose a new style for my blog... but it's finally done! And I absolutely love it. I hope y'all do too!
Halloween is one of my favorite holidays because it's my favorite season and I love dressing up, especially with a friend (or in my case, a super cute boyfriend). Connor and I spent our Halloween at a dance that he was the DJ for. He did so well and I was so so proud of him(if you ever need a DJ for a party or anything, let me know! Con really is so good and would love to DJ at your event)! I saw some really cute Elsa's this year and I must say, that was my weakness because I absolutely love Frozen and the little girls just looked absolutely adorable.
Connor and I dressed up as Woody and Jessie and I must say, we looked pretty dang cute.

I have no idea why this is blurry... I have tried uploading it through different accounts and things but it's just going to be blurry :(

I have to say that my mom made these costumes! She MADE them!! How amazing is she! Thanks mama, we couldn't have been such a cute Halloween couple without you!
I hope you all had such a fun (and very safe) Halloween! I'm sad that we have to wait another 365 some days until the next one but guess what...

I cannot wait!
Have a happy Monday :)
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under construction

Thursday, September 18, 2014

hello everyone!
sorry i've been MIA for a while... life has been going fast and i can hardly find the time to make a meal, nonetheless post on my blog!
however, i am getting used to my changing schedule and am confident that i will begin to find time to dedicate here again because i have missed it oh so much!
until then though, my blog will be under construction for a few days. so if you stop by and see things looking like a mess, i can assure you that it is only temporary! beauty is pain right? :) at the end of the changes i will have a new and beautiful blog which i can NOT wait for!
so until then, please feel free to stop by anytime you'd like: but this is your fair warning! just bear with me for a few days!
thanks y'all!
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golden moments

Monday, July 14, 2014

tonight i had a real "aha" moment.
i had a really magical moment.
it was special.
it was a golden moment.
i think i have them more often than i even recognize.
i'm so incredibly lucky. this is such a big world, and i'm such a little girl. but somehow, as the world is spinning and people are rushing, i am here: falling deeply in love, having so many golden moments every single day. and i'll never take another one of them for granted.

connor kissed me tonight and after his lips left mine, i just lingered, my eyes still closed...
soaking in every second of that moment with him.
his arms around me, my body vulnerably, trustingly intertwined in his.
the movie playing on my television didn't exist.
my cell phone didn't exist.
nothing existed but the two of us.
and the longer i closed my eyes, the more love seemed to continuously grow within me.
i was full of love for this person.
i was the luckiest girl in the world.
it was a golden moment.
every single day with connor is a golden moment.
driving down the street, my hand in his, listening to whatever is playing (country if it's my car, rock or rap or Coldplay if it's his) :)
grocery shopping for a treat we wanted to make.
falling asleep next to him after a long day.
and no...
relationships aren't always easy.
they shouldn't be.
they require so much selflessness, so much trust, so much patience.
but as many hard times as there are...
there are thousands of golden moments for one single hard moment.
we learn, we grow.
and it makes for even more meaningful golden moments.
i love him so much, guys.
so much more than i ever thought i could love someone at just 18 years old.
i don't care how young i am.
the feeling i had when closing my eyes after a long kiss with the boy i love so much was undeniable;
it was love.
no doubt in my mind.
i love him.
i love him.
i love him.
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humbling truths

Sunday, June 1, 2014

hey folks! long time no type... sorry about that. i guess i've actually sort of had a life as of recent! that's very good news, haha. a LOT of things have happened in the last little while. i graduated high school, my friends are having their farewells and leaving to foreign places for 2 years, everyone is off to college, some friends are even getting engaged! whoa, right? this is such an insane stage of life that i'm in right now. i'll post plenty about my future plans, but those are posts for another day. today, i want to discuss and emphasize some things i have observed lately and my thoughts about them. so i'll start here with a little story.

****firstly, i would like to plainly state that i love my religion. it has helped me over many bumps in the road that i couldn't have even attempted without it. my faith does not waver; it is as simple as that. i do not by any means wish to shame members of the church of Jesus Christ of latter day saints because HECK I am one, and a proud one at that. none of us are perfect, and that is being spoken through extremely imperfect lips. i love my religion, i truly do.****

okay HERE'S my story now. :)

last week was the last week of school. we had a day dedicated to signing yearbooks and bidding farewell to the people and teachers you'd actually miss. a friend of mine, sweetest boy in the galaxy, swapped yearbooks with me so we could sign each other's. i opened his and while skimming the book sleeves for a place to sign it, i saw a distinct message written in his book. it said something along the lines of:
"you're a great guy! best wishes for you in the future! GET BAPTIZED!"

surely, this caught my attention. 
here stood this boy, sweet as honey, humble as a button. he is not LDS, which is probably hard when living in a cozy, religion-based college town. my heart immediately throbbed for this boy. how hard it must be to feel that pressure. often times in the church, we talk about the pressure we feel with people who don't have the same standards as us. we may feel pressure by our peers at times to drink, to lie, to steal, to do things that we simply do not believe is right. but in this moment, looking at that yearbook page, i was seeing this town through different eyes. this boy probably has a religion he practices. no it is not LDS, but maybe it is something that he loves. mormonism wasn't a BAD thing to him, but it just wasn't what he believed and here he was, being pressured to convert to the church. to me, that was a very considerable opposition.

i didn't see who wrote this in the yearbook. i didn't care to look, because i know in my heart that this person probably meant no harm and had good intentions. but this experience did get me thinking...

what do we strive to be? what is the one thing we all are working toward every single sunday when we attend church? when we go to seminary? when we repent with humble hearts (because we are only human, mistakes will be made and that is a guarantee)? 

we all want to be Christ-like.

Jesus was an amazing man. he performed miracles, he healed the sick, gave strength to the weak. he served others before himself, he was brutally crucified in front of thousands for our souls. he is so incredibly loving, compassionate, merciful.
but i think there is one thing that tends to blend into the background of the things we talk about when we talk about our Savior.


The girl who sits in your seminary class and memorizes every single scripture and shares her testimony every single class? Jesus loves her.
Your next door neighbors who had his mission call as soon as he could, who lived worthily his whole life and can't wait to serve his Savior for 2 years? Jesus loves him.
but this is where the truly remarkable things happen, and where Christ's characteristics should really be applied to our personal lives...
The man you read about in the paper who robbed the gas station with a gun? Yeah, Jesus loves him.
That woman who you see walking around downtown, begging for money because drugs control her life? Jesus loves her, too.

missionary work is such an incredible thing. conversion is an amazing process and i truly believe the gospel is true in all it's forms. but some people, even after missionary lessons, just do not share the beliefs that we do. AND THAT IS OK. or at least, it should be.
Jesus Christ, who died for us all, knows that people do not believe in Him. but He loves them regardless. He knows that some of His sons and daughters do not go on missions. He knows that it's just not right for some of His children to leave for 1.5-2 years. He knows that some of His sons and daughters don't even believe that He exists, and he loves them no less than people who are going on full time missions, paying full tithes, or serving as a bishop.

acceptance is an interesting concept. it's not "turning the other cheek" to the kid in your math class who isn't the same religion as you. it's understanding and loving them, because they are people. and if it is Christ-like that we all endeavoring, acceptance for all people of all forms should be at the top of our lists... and this all goes for myself included! we all need to be better. no one is going to be 100% Christ-like on earth. but we're all taking baby steps and  i think acceptance is a very big baby step :)

sorry for rambling, guys...
just so many thoughts in this stage of life! people going on missions, feeling pressure to go to certain colleges, it's crazy stuff goin' on here in Provo, Utah. crazy crazy stuff.
life is crazy. but it's good if you let it be.
goodnight kids and cats!
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honest is hottest

Wednesday, March 5, 2014

i find it absolutely heartbreaking that this society seems to encourage self consciousness. some may argue that we don't do it, and i would agree that no,  we do not encourage self consciousness directly. but we DO buy magazines with models who are portrayed as flawless. we DO watch sports with incredibly talented people. all of our movies and even reality TV shows are people who are acting, they know that there is a camera in front of them and that changes a lot of the tendencies they would have if they were by themselves with no cameras.
wouldn't it be interesting to see someone all alone, unaware that they were being seen? we never really see that these days. through instagram filters and our amount of facebook likes, we are striving for perfection. we're putting on a front that doesn't show our true colors, but hey, it might get 100 likes on instagram.
this leads people to see our "perfect" selves and makes them want to be "perfect" too. we cover up our so called flaws and differences to become the cookie cutter definition of beauty.
it is truly a shame that we cannot see ourselves in our most honest of moments. like when our eyelids flutter as we sleep at night, the way we look at that special person and every fiber of our being seems to become alive, how our eyes crinkle when we giggle, or the way our tears, though they may be sad, make our eyes sparkle. humanity is the most beautiful in it's honest state: not tinted by an instagram filter or an inspirational quote as a caption. we should all remember that truth and stop ourselves from sucking in while looking in the mirror or trying to make our eyes look bigger with makeup.
we are most beautiful in our honest moments, as God made us and as we are meant to be.
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cake pops tutorial

Tuesday, January 28, 2014

here's a little (not so secret) secret about me:
i might have the biggest sweet tooth in the world. i think all my teeth are sweet teeth.
dessert is my favorite thing, especially if it's chocolate. life is way too short to not have dessert, right?
one of my favorite desserts is a cake pop. they're so dang cute and they're super easy to make.
red velvet is one of my favorites, so my tutorial is a red velvet batch, but you can use any flavors you would like!

cake mix (i just use a box because it's quick)
anything the cake mix calls for: usually oil and eggs
almond bark
anything to decorate with
cake pop sticks (unless you want to make cake balls)
cream cheese frosting (you can make it, or buy it)

  • cream cheese frosting
  • 1/2 cup of butter (1 stick), room temperature
  • 8 oz of Philly cream cheese (1 package), room temperature
  • 2 - 3 cups of powdered sugar
  • 1 teaspoon of vanilla extract

FIRST: you'll want to bake a cake with your cake mix, or if you're superhuman, you can make it from scratch. i will forever be grateful for betty crocker's boxed cake mix. when it's done, take it out and MAKE SURE you let it cool in the pan before you continue to step 2.

SECOND: take the cake out in chunks and put them in a bowl. crumble it up with your hands. it'll be a little messy, but make sure it's crumbled up pretty good, just like bread crumbs, and that it's not mushy.

THIRD: make the cream cheese frosting and add it into the crumbled up cake with your hands. this is when it gets really messy :)

yes, it gets messy :)

FOURTH: roll the cake into balls. i use a cookie scoop to keep mine all the same size, but you don't need to if you aren't OCD like me.

*if you want to make cake pops, this is the stage where you will put in the sticks. you could make cake balls if you don't have sticks. you can buy cake pop sticks anywhere, Target, Wal Mart, any craft or baking store*

FIFTH: cut up some almond bark. you could use melted chocolate if you want, but i prefer almond bark because it's easy to work with. i use the western family brand. melt it and dip your cake pops in it. let them dry a little, but not completely, before you move onto step 6.

SIXTH: DECORATE! :) this is the fun part where you can do whatever you want with your cake pops.

there you have it! yummy and cute treats that are easy and fairly quick.
enjoy :)
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life is coming

Thursday, January 23, 2014

wanna know what's absolutely nuts?
my life is going to start soon! like, it's really gonna start and i'll be experiencing real life!
though i am 18, and technically an adult, i still live at home and am still in high school which is really bittersweet.
i am SO excited to get out of the laughable education system we call public school, but at the same time, i can't imagine life without it: friday night football games, parties, ditching class, being on dance company. my life consists of all of these things and in about 4 months, it'll all be over forever. 4 of the most important years of my life will be over within 4 months. THAT, my friends, is wacko.
the worst part about this stage of life though, isn't being sick of high school or the people you've been stuck with for 4 years. it's the questions from family members who you only see once a year at the christmas party, like
"what are you going to study?"
"are you going on a mission?"
"where are you going to live?"
"where are you going to work?"
"are you dating anybody?"
those questions are so scary! do they not realize i'm 18? that i still go to parties and dance my heart out and stay up til the early hours of the morning with my best friends? how am i supposed to determine my life in just a few decisions? well i've decided that i'll never really know what i want to be. i'll be a spunky 70 year old and i still will have a new idea of what i want to be when i grow up. if there's one thing i do know, though, it's that i want to be a mommy. more than anything in the whole world. i couldn't imagine a future for myself without a mr. whatevermylastnamewillbe and our little tiny humans running around the house.
it's so crazy that i'm gonna be a real big kid soon. i'm excited. painfully, bitterly excited.
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