Happy March! (2020) Good news

Ok, it’s technically March 2nd now, but I intended this for the first day of March.

Good news- last Tuesday, my Upenn visit actually had improved results!  Barium swallow went ok although it was unpleasant, and then my pfts went up! to 60%!  I think I was wary of being too excited about it like I was last time, because the fact that the doctors don’t know why it goes up or down is really scary.  It could so easily drop again, so I don’t want to celebrate too soon, but I think finally this week it’s starting to kick in and I’m starting to allow myself to dream again and envision a future I want.  The doctors think it could be a combination of anything they threw at me, including a possible delayed effect of the steroids back in December, or the additional medication they tacked on, and the fact that I was exercising more diligently.

Honestly, even though it would be great if pfts went up more, I don’t want to be greedy, and I’ll let myself be satisfied as long as the pfts are maintained over 50%.

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I’ve had this recurring dream that even though I already earned my high school diploma, I keep being stuck and for some reason, because I have no other options, I am repeating the same year of school over and over again, even though my age keeps going up.  It’s a bit of a nightmare in its ordinariness, but I always feel unhappy in the dream, sitting in class listening to some teacher in the background, until I come to the realization that I don’t need to be there, and I don’t need to ace the upcoming test, because I’ve already graduated.

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I also have this other thought that kind of concerns me a bit.  I wonder if reversed, if I had a friend like me with the kind of complicated, invisible condition, if I could put up with it.  The little things like letting them have the bed because they have terrible sleep and desperately need every ounce of energy, or being willing to pay more to accompany them in an Uber as opposed to the subway, or getting the weights for her so she can save the actual little bit of energy for lifting rather than carrying the weights back and forth.  All my close friends have done this for me, and I always felt like a terrible burden.  I also realize that I’ve always been a very impatient person.  I was restrained by my health, but now that I am more free, I’m not sure if I could really stand being so patient after being forced into patience my whole life.


I’m also gaining more weight than I’d like.  For some reason, I don’t know if it’s my diet necessarily, or my steroids or what, but the weight gain is bothering me a bit.  I went from 113 to 117 when I weighed in this past Tuesday, and then then next day hit 118, the heaviest I’d ever been.  But the following day, dropped to 115.  Now I’m actively dieting and working out more again because I’d really like to hit 113 by the end of this week, at least.

My ideal weight is 105-110.  I’m pretty sure I can do it, because I know what I have to do.  Last time I lost the steroid weight by eating oatmeal and a banana or boiled egg every breakfast, and just cutting out more sugar.  I don’t like having a weird turkey neck and puffy cheeks, and having a muffintop so that I can’t even properly bend down to pick things up…


The other day, I passed by the vehicle registration center… and I was planning to go in to register myself as a donor.  But then for some reason, last minute I swerved and continued straight.  I’m not sure why I did that, what was I scared of?  I guess I didn’t want to confront the possibility of death so soon, even if it was only a possibility.  But I know it’s what I want to do, but it’s still a scary thought to think about.

Chasing Inspiration

The word inspiration is so easily thrown out sometimes I feel like it can lose its meaning.  I think maybe these days I’ve in a rut or just stumped, and I wonder if I should take it more easy and not stress and overanalyze on things, or if I should push myself more to chase inspiration and find it.  It can often feel like most of the people around me have their life figured out, even though I know it may not be the case.

Things I’ve been doing to try to get inspired:

-Listening to music on Spotify A LOT and listening to modern classical pieces, as well as asking friends to send their favorite music to me

-Reading a bunch of books and working my way through this UN article on accessibility

-Worked out late last night with yoga, squats, and curls, and realized how quickly I became out of shape 😦 Felt rewarded though for setting aside 1.5 hours to focus solely on my body.

-Constantly tracking my diet and my liquid intake (HYDRATION!!!)  Reading up on nutrition and browsing tons of vegan and other recipes online (I bake a different recipe each night).

-Stalking musical and other types of people I admire on Twitter

Current book- “The 48 Laws of Power”: 

“Never waste valuable time, or mental peace of mind, on the affairs of others- that is too high a price to pay.”  

“People are of infinite complexity and you can spend a lifetime watching them without ever fully understanding them.” 

I’ve only read the preface so far, and I can see this will be a hefty book to get through, but I’m intrigued.

Conclusion after preface:  Power is always present and in effect whether or not you’re consciously participating in it.  Learning how it works and at least being aware of it is good, so that you’re not taken advantage of by other’s manipulation (whether they’re conscious of it or not)

Keeping my eyes on the prize:

My lung function had decreased by almost half, and it was pretty disheartening to see.  I felt a bit more hopeful since after exercise it went up by a few percentages.  What will get me through this winter is all mental.  You need mental to do the physical.  Mental is everything.  I need to keep trying my best so that I am ready for the day I am “free”.  I may have written my to-do list already, but these are some of them that I look forward to:

  1.  Traveling with a friend somewhere, and then all places on my immediate list (Vancouver, Yosemite Park, Portugal, Seville, New Zealand, South Korea, Singapore.)
  2.  Interning in a different city/country for 3 months
  3. Ziplining with a beautiful view
  4. Doing a 5k
  5. Wicked at Broadway, and walking all over NYC

Winter To-Do List:

-Coding bootcamp prep

-Lose 4 pounds and get fit

-Read up on accessibility

-Record some new compositions

-Korean 15 min a day

-Attempt networking

-Make a personal website (?)

-Stay alive

 

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.

 

Random Late Night Thoughts- On Lung Transplants and Perspective

On Goals and Motivation:  The beautiful thing about goals is that you can always achieve them and make new ones, the possibilities are endless, and you have a lifetime to keep going.  When I was a kid, I read this book about this really old man who decided to go to school and teach himself how to read.  It was really inspiring.  He could’ve decided to stay home and been embarrassed or made himself sick with worry on what others would think of him.  I think a lot on our battle with these inner demons and realize that at the end of the day, our biggest challenge in any goal is overcoming our own mentality and insecurities.  They could be something as apparent as being in a wheelchair or having a stutter, they could also be secrets of our past that we’ve buried deep but still influence our daily thought process, and seep into our choices and actions in life like poison.

Goals can be big or small.

My smaller goals lately have been mostly to aim at realism.  I want to make goals I can achieve more immediately- cooking new kinds of food, learning a new language, focusing on building my mentality and body.  All of these are goals as long as you chip at it each day and work towards it, they aren’t less valuable or successful than typical dreams like becoming rich or becoming a movie star.  The hugest part of reshaping my mentality the past recent years was to becomes strong enough to go through the lung transplant evaluations that I knew were leading down to a path of not a maybe, but an eventually.  I had many meltdowns at night and at the hospitals because the fear was always hanging over me, my anxiety became so bad I freaked out at the very idea of sitting in someone else’s car or trying to fall asleep.  It felt like the world was weighing down on me when anyone even tried to make me talk about it:  because I could get away with it sometimes, I wanted to shove the parts of me that was ill away and try to carry on looking fine and dandy and blend in with the “norm”.  I was determined to live the life of a regular kid, to worry about friends, boys, and all the petty drama that came with it, handing my paper in on time, getting a job.

I need to take a moment now and appreciate myself and the fact that I went through that and got through it in 2017.  I don’t often reflect on how far I come, I usually focus on what didn’t work out.

Recently, one of my goals was to go through Harry Potter World in a wheelchair for the first time, and not break down.  Check.  Huge win for me, even though it’s not the same as everyone clapping and cheering for you on stage or something like that.

When I think of this and all that I went through, I almost want to laugh at how petty everything else compares in life:  when I get frustrated or disappointed with people, stressed over things I don’t have, and most of all, finding out how entitled and weird people are out there that you come across at your job.  I remember being annoyed and complaining about it, but the truth was I felt happy.  Happy that today, I got to be “normal” and complain about petty things like other people who don’t really matter in your life anyway.  It’s just noise.  Letting things get to you and affect you negatively is draining- you gotta choose what is important and worth being stressed over. This is something my dad has constantly reminded me growing up about not being too sensitive or upset over everything.

There are always going to be situations and people who suck.  You can’t go through life only meeting nice and good people, never getting hurt – and I don’t mean just by strangers or acquaintances, but the people closest to you sometimes – yes, your friends, your family.  But that’s how you learn and grow each time.  Who other people are, what you can reasonably expect, how you can deal with the situation better, how you yourself can be better.

I had an epiphany recently, and that was the realization of just how low my self confidence has been.  I always knew I was shy and reluctant to open up to others, but I was thinking about how I subconsciously approached my friendships I’ve had in a way as if they were not only valuable to me, but that I owed them the world for taking the pity and time to be my friend at all.  As if I brought nothing to the friendship, and had to spend the rest of my life trying to prove that I am worthy of being a friend.  I tried to be more extroverted, bubbly, happy, to smile and be more fun.  To go out of my way when I could for them so they wouldn’t see my flaws.  And when it didn’t work out with the friendship, it cut me deep. To the core.  I would be resentful with them, disappointed that they must’ve seen that I didn’t measure up and was too much of a burden.

  1. There is a difference between understanding who is precious in your life, but also understanding your self-worth and all that you contribute with your presence and actions.  As from the movie “Wonder”, it’s okay if you were born to be different and to stand out.  Embrace it.  You are worthy of friendships, and as long as you try your best and care for them, they are lucky to have you.
  2. True confidence comes from within. Today I came to the revelation about how regular people can walk 5-10 times more than I can at 2-5 times the speed and still don’t get tired…. how do you not feel fucking invincible??  I would.  My second revelation… if you can feel at peace and accepting about yourself even as you sit in a wheelchair with no make up on as a bunch of people you know stare at you and question you, then you’re still fucking invincible. (I haven’t reached this point of invincibility yet ._.;)
  3.   I used to think of a strong mind as a fortress, one that can protect itself from negativity, and barricade positive vibes within.  But now I think of a strong mind more as a temple- why? Let the negativity enter, sit there even.  And STILL be able to have your positive vibes rise up higher than all the noise- this is what constitutes a strong mind.

“All that shit will feel petty when you feel pretty” -Dumbfoundead