My Day at the MTV VMAs

Hello everybody! Finally a blog post about a general experience living in LA! :) So yesterday I had the opportunity of attending the MTV VMAs Red Carpet Pre-Show, courtesy of winning tickets from a fan site. I was allowed to bring one other person, so I brought one of my best friends Amanda, and later on I found out another one of my friends at UCLA also won a pair of tickets, so we all went together! 

Our day started at 11:30AM, when we all got into my car and drove to The Forum, which was around 30 minutes away from UCLA and our check-in time was at 12:30pm. Upon arriving, we quickly got in line for Priority Red Carpet fans (which was already super long by the way!) and eventually made our way to the front to receive our wristbands. After about another 40 minutes of waiting, we were finally escorted to the venue and were placed in these bleachers surrounding the red carpet in the blazing hot sun! But here are some pictures:

Panorama of my view from my seat at the VMAs Red Carpet

A picture of my friends and I while we were waiting!

Selfie time :)

Amanda and I!

Finally, after another 2-3 hours of waiting, the people in charge finally spoke to all the fans about what was going on. Even though to our right was the Fifth Harmony stage where they would perform during the red carpet, they were apparently going to enter OUR bleacher and perform a part of their song right next to us!! That information definitely put all of the people in my bleacher in an excited mood, and at around 4:30pm, stars officially began to arrive. Here are a few that I got to see:

5 Seconds of summer being interviewed right in front of me!

Sarah Hyland from Modern Family! 

SAM SMITH, one of my favorite artists! 

ED SHEERAN, another of my favorites! 

My only shot of Taylor Swift... walking away.. :( 

Miley Cyrus! 

Katy Perry! 

And last but not least... QUEEN BEYONCE. WE WERE ON THE WRONG SIDE OF THE BLEACHERS :'(

Beyonce was the last celebrity to arrive, and it was heartbreaking. The people on the other side of the red carpet were able to touch her hand and she did not come to our side. At least we were able to be in her vicinity...
So after that long day of standing and sitting and waiting in the hot sun, our feet were hurting and our stomachs growling, we decided to skip out on the Maroon 5 concert which wouldn't have performed for another hour, and left back to my car at 7:00pm to go and get some food. Overall, even though it was a really fun and great experience as it was my first time at the red carpet of an awards show, I was really disappointed we were not able to be level with the celebrities to get pictures with them like how I expected :( I was actually seat filler for the MTV Movie Awards back in Spring quarter, and I'd have to say seat filler was definitely more worth it. I don't know if I would do this again, and in fact my feet still hurt even though it's been a day!
But to wrap it all up, here's a picture of my friends and I on TV with Fifth Harmony:

Top right corner -- that's me! I'M ON TV!

Anyways, I hope you enjoyed this type of blog post, and please let me know if you want to have more little blog posts here and there about general day experiences :)

*I apologize for the poor quality in photos, we were only allowed our iPhones!

Adjustments and Patience

So sorry for the blog post delay, my midterm for the summer class I'm currently taking at UCLA happened to be yesterday! I should have realized that before I promised to post every Wednesday... whoops.

Today I want to go into more detail of the beginning stages after being diagnosed with heart disease, since I know that is the hardest to deal with--for both families and the actual person diagnosed. I was lucky and my doctors/nurse practitioners were extremely informative, and my parents also did a lot of research during the first few months, but there are still some things I wish I would have known. Added to the fact that I was extremely fortunate to not experience as much of the normal symptoms, my experience wasn't as bad as it could have been but I would like to share as much as I know to try and help anyone who is looking for information or ways to support someone who is going through this drastic change in their life.

It seems that I never actually addressed this directly, but a big part of the reason I was constantly tired and had low energy levels throughout 8th grade/high school were because of my medications. It took a while for my body to get used to it and my doctors were constantly changing doses and adding/taking away medications when trying to deal with every new occurrence that happened or just trying to have the best treatment plan for me possible. As someone who just came out of a competitive sport, this aspect was definitely not something I expected/was ready for. This is why I cannot stress enough, please don't give in and crawl in bed, but try and fight the tiredness by taking a walk outside, maybe just for 15 minutes and then increasing it by increments the next day. Most of the time I was just too lazy to be active and if I tried harder in high school to train my body, eat healthier, and help make it stronger, I feel that I could have lessened the side-effects of my medications, as I do now in college.

Another thing that took me time to get used to was how it affected the people around me and how people responded to knowledge of my condition. There were a lot of questions from everyone, especially my friends on the swim team who obviously noticed that I have stopped swimming. As I've mentioned before, people at school asked me why I did not participate in P.E., and while I told majority of them, "I'm sick," I did tell some people, "I have heart disease." Of course, you can't expect much from 8th graders, but there were a couple of people who said, "wow, you're so lucky, you can skip out of P.E.!!" Actually, even to this day when some people learn about some of the accommodations I receive because of my disability, I get the occasional insensitive, "wow, so lucky!" NO, I am NOT lucky to have heart disease, did you actually think I asked for it?! I know now to not react to their ignorance, but in the beginning I was extremely bitter about my situation and it definitely did not help that people were actually wishing they were in my spot (figuratively). So I guess, please be aware you/your child will receive a lot of questions from people and will most likely receive some of these type of responses from people; and if you are someone who is looking for ways to support someone who has just been diagnosed, be as understanding and sympathetic as possible (and don't pity them!! I hated being pitied.. haha)

Another adjustment that I'd like for people to know is something that could either go one of two ways-- when the person who's just been diagnosed is always thinking "oh yeah, I can do that," or "no, I don't think I can do that." Of course, the second way is much safer and eliminates any possibility of danger or anything, it can also be extremely halting of living your life. I, unfortunately, fall into the category of "oh yeah, I can do that" and caused me to learn my lessons the hard way. Too often do I think that I can do everything else my friends can do, especially at my age where the last thing you want to do is be left out. Although my rock climbing experience is somewhat in the middle of the "oh yeah, I can do that" category, as I'm sure my parents and I really didn't expect me to not be able to do it because it wasn't legit rock climbing, just those fun, easy, pretend rock climbing things at amusement parks and such, my real experiences of thinking "oh yeah, I can do that" happened during college. For example, freshman year I went out to parties and may have had the teeniest sips of alcohol, not wanting to miss out on all the fun with my friends, and it was actually at a party that I had one of my cardiac arrests. Ever since freshman year, I have stayed away from alcohol or anything potentially toxic for my body. Of course, it always sucks being the only sober one at parties but I've gotten used to it and besides, as according to my sophomore year, I barely go to any parties anymore. I guess what I'm trying to say is that even though it might take a while to figure out all these new limitations to your life, please don't let it make you stay at home and be too scared to do anything, but of course, it is always better to be safe than sorry.

Last but not least-- the future. When I was first diagnosed, I really didn't know what to expect for my future. During the first few months, since there was the possibility that my condition was acute, I thought I would be better after a year, but when I wasn't getting any better, that's when I didn't know how to react. I was never going to be able to complete my dream of becoming an Olympic swimmer, so what was in store for me? If I told my freshman year of high school-self that I would be attending UCLA right now, living my dream in LA, meeting all these celebrities at red carpet events and making amazing friends that I even went on a spring-break trip with, I wouldn't believe myself. There are so many happy stories out there for people with DCM, but there are also many sad stories. I think my best advice for that is to just focus on your own story. Surround yourself with support and love from family and friends, and make sure that you are receiving excellent care from doctors you trust and agree with.

On that note, I am going to end my blog post here but this Sunday I will be attending the red carpet-pre show of the Video Music Awards!! :) I will probably put out a blog post for that, so stay tuned! I'm so so so so excited, and one thing you should know about me is that I am obsessed with celebrities hahaha.

The Social Aspect

Hello everyone! First off, I would like to say that I am going to try and update this blog every Wednesday from now on, but that might change to every Friday later. It also depends on when my midterms/finals are, but I will do my best :)

So, although I feel that I have many things to share about my life living with heart disease and how it has effected me, I struggled to figure out what to write this week. I think I will try to write about the "social" aspect of it, and how it has played a role in my social life.

As my dad likes to constantly remind me, no matter how much I wish it weren't so, I am not a "normal teenager." Many parts of my life are actually as normal as can be, which is obviously the goal for people living with chronic illness and the goal of my doctors with my treatment plan--for me to live a life as normal as possible. However, I always have to make sure that I am not over-exerting myself and doing anything that might cause my heart to have irregular rhythms. Because I have a hidden disability, I have the privilege of hiding my illness when I meet new people and introduce myself to others, and I get to, for the most part, decide who knows about my heart disease or not.

Starting college was the first time I finally experienced how my illness effected me socially. In high school, all my friends and majority of people knew about my heart disease, which makes sense since I did miss a lot of school. However, in college, I was starting a new blank page. Of course I wasn't going to go around and tell everybody I met that "Oh, by the way, I have heart disease" but I was faced with the decisions: Who do I tell? Who can I trust? How will they react? My parents have always told me to hide it as much as possible, and only tell people who need to know-- for example, my roommate, and my RA. I guess they are scared of people reacting badly and will somehow use it against me, but what I have come to learn is that people--my friends--are usually understanding and compassionate. Although it is awkward at first to bring it up in conversation, I made new close friends in college and shared with them the hidden side of me. When we would go out and have to climb the horrible hills at UCLA, they would stop and ask to make sure that I was okay and not too tired or that I was not exerting myself too much. As I have mentioned before, I was extremely lucky and managed to be paired with roommates who were so understanding and kind that they even stayed at the hospital over night with me while I waited for my mom to fly down and be with me. My friends all visited me while I was in the hospital during my freshman year of college, bearing generous "Get well soon" gifts and presents. Even for my spring break camping trip last March, it was definitely difficult to complete so much hiking and activity but I had a friend who stayed back with me at my pace and I was able to have a very enjoyable time despite the fact that I could not keep up with the rest of the group without over-exerting myself.
I guess what I'm trying to say, is don't be scared of letting your child live as normal a life as possible, because there will always be people and friends who will help guide their way and look out for them. I know my own limits, and even if I sometimes think, "Oh, maybe I can do it" there is usually a friend by my side who asks, "Are you sure?" and I would reconsider and not do it. I don't go out as much as my friends do, and I don't drink at parties. I can't go on roller coasters or go skydiving, and at concerts I have to be far enough away from the speakers so the bass does not vibrate my chest/heart. I get tired faster than a normal person, and there are times when no matter how hard I try to keep up with my friends to not miss out as much as possible, I have to stop and rest/recuperate or else I start to feel a lot of irregular rhythms in my heart.

However, despite all these limitations, and with the help of my amazing friends + support group, I try my best to not let my heart disease define my life or who I am. I try my best to live my life to the fullest, but always to be aware of my limits and that of course, I am not a completely "normal teenager."

A picture of my best friends and I that I have made at UCLA :)

Integrative Medicine | Eastern and Western Medicine

The current meds I take, shown in a weekly pill organizer

One of the things that I had the hardest time wrapping my head around after my diagnosis was the fact that I would be taking medications for the rest of my life. I know that it is different for others who are born with their disease, but as someone who was not it was definitely a drastic change in my life. In the beginning, my mom gave me my medications that were prescribed by my cardiologists, but about 5 months after my diagnosis, my mom decided it was time to try her hand in Traditional Chinese Medicine. All my life I have grown up drinking Chinese herbs for when I had a cold or upset stomach, so this was nothing new to me. However, in combination with making me drink traditional Chinese herbs (which, to be entirely truthful, tasted utterly disgusting) my mom sent me to an acupuncturist three times a week after school during the end of my 8th grade. I would get dozens of needles pricked into my back for 30 minutes, and as long as I didn't move, it actually wasn't as painful as it looked. I think I tried acupuncture for a total of 2-3 months, but unfortunately it just did not work on me. My heart condition stayed the same (as in, my ejection fraction did not change), and even the herbs did not help me.

All of this was before I started high school, and as you know at the beginning of my freshman year I had my first sudden cardiac arrest, so after that I just stuck to taking my many, many prescribed pills morning and night from my cardiologist. I have heard many success stories from people who tried acupuncture to help their health conditions, but it just happened that my condition could not be helped. I am still glad (somewhat) that I at least tried acupuncture, and of course it made my mom happy. I got into the routine of refilling my own pill organizer once a week rather than my mom doing it for me, and after being grilled every time I visited the doctor's, I had to memorize all my medications and their dosages and even their functions (all thanks to my Stanford nurse practitioner, although in hindsight now I'm very glad she made me learn them)! My parents and sister constantly nag at me with the question, "Did you take your meds?" and although I must admit there are some points that I get extremely annoyed, I know they are only looking out for me and showing their concern. Sometimes I actually do forget until they ask, so I'm glad that they constantly ask me that question.

Now that I'm in college, I have to personally refill my prescriptions at the pharmacy instead of having my parents do it for me like they used to, and I also have a reminder on my iPhone every day morning and night to take my meds, just in case I forget. You would think that something so routine in my life would just come naturally, but there are some days where the only time I remembered was because of the alert on my phone! Although during the first years after my diagnosis I viewed taking my medications as a nuisance, I now see them as a safety blanket, since I know taking them definitely helps maintain my heart disease and prevents me from getting worse. It still is a chore sometimes but I've become so accustomed to it that it's just a part of me. Of course, one day I hope to take less and less pills, but for now I trust my cardiologist and electrophysiologist in how they are handling my health plan and doing what is best for me.

As for my advice to parents: if your child is old enough, start them into the habit of making their own meds and refilling their own prescriptions! And no matter how much they get annoyed at you for constantly asking them, "Did you take your meds?" still do it as much as you can, although it is quite tricky since sometimes I also felt that my parents didn't think I was responsible enough to remember to take my medication everyday. I guess it's better to be safe than sorry, so maybe just secretly check the pill organizer before you ask the question? :)