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!
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!
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