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.

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? :)

Living the Healthy Choice

Now that you know a little more about me, let's start with something that I've been feeling really strongly about and that I feel that has contributed greatly to my current stability: eating healthy and being as active as possible! I know that everyone's activity/exercise restrictions or capabilities are different, so I will mainly be focusing on the benefits of changing my diet.

All my life I have been blessed with a fast metabolism, so after I stopped all exercise after my diagnosis I stayed pretty skinny, but in no way did that make me anywhere near to being "fit" or "healthy". My energy levels were constantly low throughout high school and I generally always felt tired and in need of naps. In fact, I'm pretty sure every day after high school I would come home and take a nap. However, because my mom is a strong believer in a well-balanced diet, I always did have a decent amount of vegetables and fruit in my diet, so I definitely wasn't the unhealthiest person on the planet. I probably was the pickiest eater though (don't get me wrong, I still am)! I hated wheat bread, I hated bananas, I hated the majority of vegetables, and when faced with options, I'd always pick the unhealthier, "tastier" choice. I'm pretty sure I ate a lot of chips and junk food every day or whenever I felt like it, and no matter how much my sister, who is studying nutrition in college, or my mom urged me to eat healthier, I paid no attention. It wasn't until I started college that I realized how much I needed to change my diet.

Being at UCLA has definitely been a blessing. Ranked one of the best in the nation for our dining hall food, there was always a plethora of opportunities to choose the healthy choice. Being around people who ate healthy and sick of feeling tired and weak all the time,  I decided it was time to live the healthy choice. I started by making the switch from white bread to wheat bread, from pizzas to salads, and from Frosted Flakes cereal to Special K with strawberries. I made myself suck it up and eat things that I would have never done before, such as oatmeal, spinach, kale, and beets, and I basically cut off junk food from my diet. It was definitely tough in the beginning, but eventually I felt my energy levels increasing and I felt so much better physically and mentally. I did some yoga during the winter quarter of my freshman year, and I began going to the gym five times a week for an hour. By the end of the school year, my energy levels were great and I felt amazing and as healthy as I could be. In fact, I was healthy enough to travel Europe that following summer of 2013 with my family, and just this past March, I was well enough to go on a camping trip with a bunch of my friends for spring break!

Nutrition and diet plays a huge role in helping our hearts and bodies function at the best they can be, and if I was able to have any advice when I was first diagnosed with heart disease, it would have been to change my diet, exercise lightly, and live the healthy choice. Junk food every now and then is definitely not going to hurt you, but as long as you eat it in moderation and balance them with healthy meals, you should be fine. If you are in my situation or know anyone with heart disease, I really strongly encourage healthy eating and as much exercise as possible to help you feel the best you can. Even daily 30-minute walks to go along with eating healthy is a great step in the right direction!

Disclaimer: I am in no means a nutritionist or a dietitian, so if you would like full advice on how to change your diet and balance your nutrition, please seek one out. I am just speaking from personal experience! If you would like me to post some examples of some meals that I eat, feel free to let me know :) In fact, if you would love for some ideas to get you started, you can check out my sister's blog here!

A picture from my spring break camping trip with a bunch of my friends back in March! :)