Reminder to be Thankful: Healthcare, Career, and Other Basic Things Most ppl take for Granted

I’ve started my second week of work, and I remember thinking of my last job and how excited I was just to have a job and be healthy enough to go to work everyday.  After a couple months though, the excitement wore off and the work became mundane- I felt restless and uninspired, not to mention the weather got colder and more difficult for me.

I had this thought at the end of last week that it seemed I was nearing the end of my training and picking up most of what I could pick up at this job and place, but I really hoped that wasn’t the case.  Thankfully, I think I still have a lot to learn, and if I do well and still last here 3-6 months later, maybe I’ll get a raise or they’ll consider moving me to another higher position in data.  Ideally, my image of “making it” career-wise would be to climb up the ladder in terms of data analyst, then data scientist, of which the avg annual income is ~$100,000.  Even though money isn’t everything, it would definitely be one less thing to worry about and would make life a little easier.  My hospital stay for just 8 days last year ended up costing ~$50,000… I don’t know how people are supposed to survive and pay that without insurance in America.  Definitely a huge problem.  It’s inhumane not to provide people with the basic ability of maintaining their health and welfare.

I’m glad that compared to certain peak times of my life, these past months I haven’t had to visit doctors an incredible amount- I have to take off once a month so far, and I try really hard to book my appointments for other things after my work ends, which is possible because it’s part-time.  As I grow older, I become more and more aware of spending money practically, and investing in things I need. Really need.  Like work clothes.  What I WANT are a nice new pair of bose headphones and for my mac computer to have sound again, but so far, I am living life fine without either.  Shout out to you Sean if you’re reading this lmao because I use bluetooth on the sleep machine to get sound when I connect it to the laptop 😀

So what I want to be thankful for now, and what I have to keep reminding myself when I start to feel bored or annoyed that I have to go to work, is that it is a blessing to have the ability to have a job and to make it there everyday.  I remember those cold winter months where I had really bad winter blues and was alone and so frustrated that I was just full-time sick, watching everyone else simply have opportunities to hit their goals.  I don’t need anyone to hand anything to me, I just want the opportunity to earn it.  Because now that I am not down with the flu/cold or my lungs are fucking with me and I can manage my current job so far, I feel confident that I have the drive and the ability to learn and make it to where I want to be.  As long as life doesn’t throw more shit at me (which I know it will), I can do it.  And that is one of the biggest leg ups I have over my competition.  I know what it’s like to simply not be able to try.  When you’ve never known what it’s like to have a chance feel like it’s completely robbed from you, you don’t know anything else except to take it for granted.

I know I’m not earning that much right now.  But it’s a step above not having the ability to earn anything at all.  And even if I get fired now, I already picked up so much on the corporate world in one week, and other random technical jumbo I never thought twice about that impact our lives very much, that it’s okay:  I know it wasn’t a waste of time.  Absorbing knowledge is great 😀  I’m starting to migrate towards analyzing real work this week in their many Excel sheets… my biggest wish is that the learning doesn’t stop here and I’m not stuck doing this for weeks on end, or for the rest of my position there.  Give me a chance to prove what I can bring when illness doesn’t prevent me, and I will kick ass.

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Summer plans – Productivity

So I always feel like I’m not doing enough.  For myself, for other people.  It’s a lot of pressure.  I’m consciously making an effort to think of all the things that I AM doing though, and there are a lot of things actually that I’ve worked towards and improved on despite all the other regular shit going on.

  1.  Crisis Textline Volunteer – in the process of being trained.  I already agree with a lot of the things I’m being taught in the guidelines and videos, so that’s a good sign.  I worry that I won’t be able to handle it emotionally and will feel like a failure. But I still think it’s a good challenge to try.   Text HOME to 741741 if you’re looking for support.
  2.  Starting a new job as a Data Entry Specialist this upcoming week- again, feeling like I might be a failure if I can’t hold onto this job or feel sick and end up quitting/getting let go.  But that’s another thing I’m working towards for summer plans, and I hope I at least learn something.
  3. Dating – Yeah, I had an anxiety attack last night thinking that I’ll never find somebody, but I did go on a few dates and it’s probably hit the end of the road in that department for now, but whatever I tried lol yay me.
  4. Seeing friends – I’ve definitely made a huge effort to stay present and updated in my friends’ lives, and I am pretty content with my social life at the moment, which is a rare thing.
  5. Body – I’ve hit my weight goals and also hit the gym 9 times the past month, which was my original goal all year long and I wasn’t able to hit that goal until recently.  I do see mild tricep/bicep lines, but legs and butt still feel like sticks.  Regardless, I’ve also taken up Sunday yoga again and I’m happy I forced myself to do that because it does help more or less.  My parents also go on evening walks and my dad goes on a few runs each week, so I’m also proud of them!

Making Lemonade out of Lemon

Hella cliche I know.  But I was thinking about how the past UPenn hospital visits have only become increasingly difficult, with more doctors from different departments added on each time.  It definitely took off in the “worse” direction around the time I decided to do the lung transplant evaluation.  I was rambling to my friend about making lemonade out of lemon, even if it’s kinda shitty, just to make it edible enough is good enough for me.

I used to be someone who just kind of enjoyed bubble tea.  But now bubble tea has taken on a whole new level of meaning for me.  It’s the reward I looked forward to after my rough appointments and tests.  It’s forever going to be ingrained as a positive memory I will cherish, grabbing Mr. Wish with my dad or my parents, a ritual you could even say.

So with all the rough memories that are occurring in my life, I am still trying my best to balance it out with each visit ending in lemonade, even if sometimes it’s only barely edible.

Create your own silver lining?  It’s damn hard but I’m trying anyway.


On a slightly separate note, I think I’ve finally reached that point where needles don’t completely send me into a near anxiety attack.  It’s my 20th or something blood test/needle in the last year, and now I kinda just stare at the needle in disdain.  Still a bit nervous, but not nervewracking.  You just don’t know how strong you are until you’re forced to challenge yourself consistently.

Dating with a Chronic Illness

My mom has talked to me about what it’s like to live in another country where English is its primary language but not yours.  There are a lot of struggles that I can only imagine, as I am privileged to grow up understanding two different languages and two different cultures.  There are times where they clash, but it was overall still much easier to absorb for me than for her.  There comes the theme of caring less what other people think, and doing what’s best for yourself.  Even though the situations vary for all of us, the feelings are very similar.  Anxiety or worry about how others perceive us, how they judge us.

It frustrated me that it was frustrating for her, and that she could not seem to overcome those feelings.  More relevant, to become more self accepting of myself so that I have the courage to reach for things I want out of life. Particularly with the process of dating and fearing the reception and outcome.  It is really difficult.  But I really have to work on becoming okay with who I am, chronic illness included.  It doesn’t define me, but it definitely affects me in so many ways.

 

On Toxic Relationships: how long do you hold on before giving up?

So… I grew up pretty desperate to have friends.  I didn’t realize this at the time, but wow.  Any friend who would take me, I was pretty happy and excited.  Being homeschooled sucked in that regard- nobody in school really bothered to invest in you as a friendship, so I was invisible.  Even when I was there, I was always so lethargic I don’t know how I made it through looking back now.  And I realized that some people who vaguely knew I had some sort of illness didn’t want any part of me there.  That feeling stayed with me for years, and entering college, I thought freshman year that I had gained some tremendous confidence… but it was fake confidence.

At my core, my confidence was riddled with holes of insecurity, so the foundation was crumbling still, but I didn’t know.  I thought with the fresh start at a new place, I could keep my illness as hidden and buried as deep as possible for as long as I could, and in situations where I had to end up bringing it up, I felt like a torn individual holding my breath, backed up against the wall by their pending judgment.  So… it wasn’t true self acceptance.  Yet.  People thought I was cool, really nice, and even attractive (LOL).  Some people even thought I had dated a lot because I seemed so confident?!  Haaaaaha.

And the time came when I met new friends who were nice to me.  Who seemed to accept me.  I gave all of me, and more into building those relationships… it was exhausting.  I was in a new place, I needed friends to eat meals with, to just hang out with, study with.  I was content to find just one or two solid friends, but hunting was hard when most people were hyped up to party and go nuts, especially the first year.  I wanted to fit in, so I tried.

But I felt burnt out a lot, giving a listening ear even when I was stressed out about my own issues.  I had a ton of music pieces to learn, yet I had this one friend, the first solid friend I found, who often needed my help.  When I first mentioned it to my mom, she warned me not to give away too much help so freely.  Especially my efforts and time.  I didn’t understand what she really meant at the time, and got annoyed.  I felt my mom was too jaded with the world and pessimistic. My friend needed me, so I wanted to prove that I was valuable and worth it.  I didn’t know how to say no, I need to focus on myself right now.  I never said no.

By the third year, I started to get fed up more and more as I noticed this consistent trend where the friendship was a one way street.  She found a boyfriend soon, I was always the leftover one.  She only made time for me if she needed something or if her boyfriend was busy doing something else.  She would out of the blue ask me to grab coffee, and I would excitedly say yes.  But then she would somehow whip out her chinese homework and sweetly ask me what the answers were one by one.  She would ask to study together, then ask me to see my Works Cited page.  She would barge into my room 10 minutes before class started to ask me to use my printer for our senior project class, making me late because I walk slower, multiple times.  The one time my printer actually was malfunctioning and I told her, she got mad at me.

She would say she’s hungry, if I could make ramen for us, and that she would do the dishes. This was the final straw, and the moment I truly burnt out.  Throughout many other examples such as this, I kept trying to convince myself that it was just a phase where she was going through something difficult and really needed me there for her.  I woke up the next day and realized she had not done the dishes, so I grudgingly rolled up my sleeves and did them.  It was this moment where she came out her room and needed to vent about something serious- it was in the morning, and I was not in the mindset to listen, I was tired of our entire friendship to be honest.  I tried to say something helpful, but knew it was useless.  She actually stared at me, then went back into her room and slammed it.  Yes.  Slammed it.

A few nights later, we ran into each other in the art building and decided to talk it out.  I wanted to explain to her for the second time ever that I felt this was a one way friendship a lot of the time.  She got angry with me that I was upset about the dishes not being washed when her problem was more important- I agreed.  But I realized that it was not about the  dishes.  It was the entire friendship that was wearing me down.  She said she felt it was pretty equal, but that she was sorry.  It was always so easy for her to apologize.  After a while, it felt a bit like it had lost its meaning.

I wanted to care about her and be there for her, but I was finding it extremely difficult to juggle on top of everything I was going through on my own.  There were a few moments where she listened to my problems or something, but each time, she would count it.  She would bring it up the next time I tried to explain how I felt and recount how she had done this one thing for me.  I never kept track. It rendered me speechless how she always remembered anything she had done for me and wanted public credit for it (she would ask me if my professor knew she had helped me with an assignment one time… I got a B- on it anyway).

After that talk, a part of me completely burnt out.  During this friendship, it made me paranoid about my other friendships- did I perhaps treat my best friend at home this way?  I tried to look back on our serious talks- all of them had been me ranting or being upset to her, almost never the other way around.  I called her up one night, crying because I was so upset.  I asked her if it felt very one way to her, that it was always me who needed her help.  Even at this, she excelled at comforting me.  She told me, if she ever brought up feeling that way to me, how would I respond?  I said, I would feel so awful.  And she said she knows that if the time ever came when she needed me, she knew she could rely on me to be there in return.  That was probably one of the most comforting responses I’d ever heard in my life.  She told me that while it was important to be there for that friend in school, I was going through a lot of bullshit in my own life.  Was that friend ever truly there for me back?  The answer was not really.

And this was the moment where I wondered… did I hold on enough?  Did I give up on her in a time where she needed someone to hold onto?  Was it selfish of me to let go?  I knew that if I was going through a rough time, I would be so sad if a friend faded away from me.  But what I didn’t realize was that was already kind of the case.

Self care.

Looking back at times, I wondered if perhaps I was too harsh regarding her.  If she wasn’t really that bad, but I was too sensitive and had made it up in my head.

Recently, I realized I went straight the opposite of who I was.  I became the jaded person who tried to care less about relationships with people, especially new ones.  To expect disappointment as an eventual outcome.

The truth is somewhere in between.  There will be disappointment for some of the people you meet in your life.  But not all of them.

You should still keep moving forward.  Still try your best in regards to how you treat people, but also understand reasonably that it’s not likely they will all have your best interests at heart or reciprocate.

My senior year, at our small college I felt that I had met everyone I was likely to become friends and was very close to accepting the fact that I’d be a loner and graduate with no friends.  My therapist at the time encouraged me to keep trying to get to know other people outside of my prior friend group, in which all ties to each other were burnt bridges.  Despite feeling close to certain that there was nobody left and that was probably something perpetually wrong with me that drove people away eventually, I found a really good group of friends that remain strong three years later.  We don’t see each other often, but I know none of them would backstab me or treat me like I was treated.

I should still treasure the friends I have now the way I did, but not to prove my worth as a friend.  Just because I genuinely care and I know both their worth and mine.  I do not deserve to just stick on to anyone who will take me, I deserve more than that.  I can bear to choose who to invest what energy I have in.  At least on my part, I’d like to continue being remembered as the dependable friend.

Prayers for Motivation

I remember growing up, when I blew out my candles I always prayed to be healthy.

Now that I’m older, I try to aim for more realistic prayers… I know there is a high chance I won’t ever get to experience what it’s like to be healthy or “normal”, but I pray instead for the motivation to want to push myself to want to be the best version of myself I can be.  The courage to actually strive towards working my hardest even when I know my ideal version might not ever become a reality.

I feel like my prayers have somewhat been answered lately?  I am far  from who I want to be, yet I actually wake up feeling… motivated.  I’ve been working hard not just to write up what my goals are, but doing them.  Diving headfirst into the world of data science, and going when I am able to the gym, despite knowing it’s going to be a long journey and I will always feel out of breath and never quite “there”.  This is already an improved version of the mentality I used to have, drowning in depression and fighting simply to get through Step 1 of: wake up and feel motivated.

Any haters in the world whose judgment and attitude towards me used to cut me like a knife… turn it into noise

Accomplish, accomplish, accomplish

Beauty of goals is that you can make many, and as soon as you achieve one, you can make new ones.  They could be professional, personal, social, anything.

I’ve been showered with love from my friends this 25th birthday, especially without asking for it.  I feel pretty lucky.

I also feel accomplished that I raised a fundraiser of $100 for WWF, expecting nothing but actually reaching my goal within two days.  Generous friends I have.

Hopefully, this money really goes towards helping the animals in need and helping our planet become just a bit better.


I need to make new goals.  It feels a bit like I had some straightforward goals but fell off the wagon lately.  I’ve been quite busy, considering it’s me and I need many rest days in between events and tasks.

Having gone to Harry Potter World was something that’d been on my goals list for a few years now, and that’s complete!  Lung transplant evaluation, over with!  Fundraiser for birthday, done!    Also planned to do a week of each country’s culinary cuisine, but only managed to complete week of Korea and a bit of Japan.  Putting that on the back burner for now.

Still, it kind of feels like I’m wandering aimlessly and should be working hard towards new goals.  I have fallen short on my Datacamp courses, and need to really get a leg up and dedicate myself to it this month of March.

I also feel like my body has become weaker, but there’s so many factors into why that it can be hard to tell what the reason is and whether it’s permanent or temporary.  Hard to tell if I’m supposed to rest more or to push my body a bit to activate it.

Another goal I’d like to work on is getting healthier and more fit.

And it’s almost March… I need to figure out what job I’m going for as the weather gets warmer.

Also gotta clean my room and do some chores.  Seems like there’s nothing and everything to do.

So as a summary… for March:

-Accomplish Datacamp courses, write a detailed schedule to stay up to date

-Work out more, try to gain some leaner muscle  (no skinny fat)

-Continue lessons on Korean and Spanish

-Find a part time job I’m passionate about

-As per usual.. remember self-care to forgive myself, my body, accept that I take things slowly and one step at a time.  Take time to socialize with friends and do fun things when I am able.  Take medication, do treatments, try to not become sad.

Attempting to Make A Korean Dinner Pt. 3

My chopping and mincing skills are getting better I noticed! Regardless, I roughly followed Maangchi’s recipe for japchae and it still took me a long ass time to prep everything.  I had to utilize 1 pot, 2 pans, 2 chopping boards, and prep 9 different components of veggies for my japchae cause I’m greedy.  It was fun though, and the result was quite delicious! My parents seemed to genuinely enjoy it which made me happy ^_^

Yields 4-5 generous servings

Ingredients:

(All medium heat unless otherwise specified)

-1/2 bunch of enoki mushrooms (20-30 sec. cooking time)

-1/3 lb beansprouts (20 min. boiled with cover on –> idk why so long but Maangchi said so)

– 1 egg, yolk + white separated (matchsticks)

-5 green onions (2-inch chopped, 40 sec. cooking time)

-1 generous handfuls of baby spinach (30 sec. blanched)

-1/2 cucumber (matchsticks, 20 sec. cooking time)

-1/2 onion (fat matchsticks, 2 min. cooking time)

-1 red bell pepper (matchsticks, 20-30 sec. cooking time)

-1 carrot (matchsticks, 30 sec. cooking time)

-1.5 cloves raw garlic, 1.5 cooked garlic

-16-20 shrimp, deveined (1 min. cooking time maybe, or whenever color has turned orange immediately)

-1/2 lb. japchae (boiled for 8 min, taste test)

-adjust soy sauce and sesame oil, roughly 2-2.5 tbsp each, 1 tbsp sugar

-sprinkle roasted sesame seeds on top


Other mini accomplishments for today:  Used up my spoons on folding laundry and cooking.  Tomorrow will be gym, data science, cooking bibimbap, wash hair.  Hopefully I won’t run out!

Thoughts on Morality (Shower Post #4)

I think it’s a fair thing to say that the more we get older, the more jaded we get- we have less patience, we have less faith in others, we become more cynical or realistic, depending on your perspective.  I think for me, I have definitely become more cynical/realistic with age.  Whenever I go through something difficult, I think, why does no one know or feel my suffering?  Why does it feel like I am even more isolated and alone?  Instead of having faith in others, we fear reaching out because we don’t trust that anyone actually cares, or sincerely cares.  I think this is the logical path that people follow that can lead them to such a dark place, to the point of even suicide.  At this point, it seems like your life doesn’t count anyway, and it won’t matter.

For me, I get frustrated because in chronic illness, the suffering doesn’t end.  It’s not like a cold or a break up where your circumstances may improve eventually; they don’t.  You do.  Your mind sinks or swims.  And then I hide my fears because I’ve had it proven countless times to me that in the end, it seems I am the only one who can fully do anything about what I am going through.  Besides my dad and sometimes my mom and a few close friends, I am pretty much alone.  Almost no one else is there beside you every second living your life, observing it, experiencing, as much as you, having that strength of endurance.  People will enter and leave your life, maybe be a blessing even for the short run, but they can always fade at any given time.

We are all so scared of showing vulnerability, of laying out our cards and letting everyone else judge us, embrace us, or reject us.  Especially when we go on social media like Facebook and Instagram, and we are flooded by images of hot, fit bodies, attractive portraits of people laughing, having the time of their lives with their significant other on their vacation, surrounded by friends, or eating delicious food.  It is true that the positives and highlights are part of our lives, but they are only a small snapshot of the entire rhetoric.  Our whole society encourages us to hide our insecurities and to only portray our best selves, but it isn’t always the whole picture, the whole truth.

I do the same.  I only put up pics of my happiest moments of when I look good on Instagram.  It does make me feel better to take pride and look at these images and tell myself “Wow, my life is not bad!”  It does make me feel more or less validated when I get many likes.  But I also wish to be brave enough to allow myself to receive likes on my ugliest, saddest, most depressing snapshot of my life- even more so, I want to be brave enough to be okay with no likes if that’s what happens.  I may be afraid of judgment, or of dragging down other people’s happiness- but so what?  We gotta inject some sincerity and realism in what’s really going on in our lives, to show others our scars so that they can be more accepting and forgiving of theirs.

People don’t see me through the moments where doctors discuss my life span and ask deep cutting questions like “Have you ever had suicidal thoughts” and me, reluctantly admitting “yes.”  People don’t see me when I wake up in the morning and count the amount of meds I daily pop into my mouth or inhale.  People don’t see me when I am at home, physically and mentally too tired to complete simple tasks like laundry.  I fight everyday to live a fraction of energy and memories that others take for granted.

Maybe part of this is my fault, for not being more open, and for withholding part of the truth, I actually get more judged than not, because people see a “normal” young woman abusing a handicap sign, people see my beaming grins on my Insta, and people see me when I am trying my absolute best to participate happily in life.

I guess for me, faced with the morality of my being, and always reminded of how small of a drop of water I am in the ocean, I keep questioning, how do I make my life count?  It is not going to last forever, but that is out of my hands.

What I wish, is for people to think more on this question, on how they impact others, and to be part of a greater plan for us all to have faith that if we fall, the ones around us care enough to catch us, as cheesy as that metaphor is.  To come to terms with our true selves and the imperfection we are- taking pride in our strengths, accepting our flaws and vowing to work on improving them.  So that we give encouragement and faith to others, and in turn can let ourselves fall in faith.  Knowing that we are trying our best, even if that’s not what it looks like, even when others tell us we are crying wolf and victimizing ourselves, them telling us we’re fine, but us knowing for ourselves that we are not okay, and knowing that continuing to do our best is okay, it is enough.

Disney + Worries

So… my family is planning a trip to Harry Potter World and Disney and I’m simultaneously excited yet super anxious.

The biggest hurdle is that my therapist suggested that I start using a wheelchair of some sort so that I can avoid becoming exhausted to the point of major discomfort and fatigue, and tense muscles.  I had never considered using a wheelchair before, and the hypocrisy that is me, is that when I see other people in wheelchairs, I don’t think much of it, yet when I think of ME in it, I am riddled with a million feelings: perhaps

Shame, that I have to submit to a wheelchair and can’t make it on my own two legs,

Guilt, that I don’t really deserve to use a wheelchair and am a “fake” illness person (doesn’t help that tons of other people have doubted my illness over the years), and that my family will have an extra task to do in pushing me around,

Embarrassment when I have another extra thing to make me feel different, and perhaps

Relief and Hope too, that this might be much better of an arrangement for me energy-wise, if I could only wrap my head around accepting it.  The truth is, my whole life I’d lived in the mindset that my lungs were going to eventually heal and become “normal” when I reached adulthood aka college, yet I was slammed with the ugly reality when I switched over to an adult doctor, who told me I should be prepared for lung transplant evaluation instead.

My whole life, I’d been competing with people functioning at full capacity, when it was literally not possible.  And even after the sad realization, I could not bear to face the reality that it was, and continued to live in doubt and silence.

After a few years of therapy now, which I started on and off 3 years ago, I think I’m becoming better at shifting my perspective to a more positive one, but it’s still a really long and bumpy road.  I have to expect that most healthy people, especially ones at my age, will simply not get it, or even have the patience to try to get it, because they have their ableist privilege, and all I can do is control my own mentality.

The list could go on forever for all the rough moments in my life when other misguided people mistreated me and misunderstood me, believing I was taking advantage, or lying, “playing a victim”, or one thing or another, just because there was no visible evidence in their eyes.  And it caused me to continue to doubt my own capabilities and limits as well for a long time.  But now I realize that you do not let other people’s ignorance hurt your own knowledge and perseverance. You are not any less just because you were given less spoons.

I have to learn to forgive people and move on, because for a long time honestly, I’ve let myself get caught up in the unfairness of it all, and the rudeness of others causing me so much hurt and pain.  No more.