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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