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%.

——-

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.

—–

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.

Productivity and Savoring

I’ve had a solid good week.  Been feeling pretty good lately.  It’s a combination of I’ve been making conscious choices to keep busy and stay productive, to make the most use of all the energy I have now, and my parents are also in a good mood.  The weather’s been pretty perfect lately, in that 70s range, so I get to go out on walks.  Last weekend, my brother came home and we went to a farm and also hiked.  The day before that, we walked at Duke Island Park, and both days averaged around 2.5 miles, so I felt pretty accomplished as I’d been trying to hit 2 miles for awhile.  The next goal is to stay at 2.5 miles more consistently, and to eventually hit 3 miles, then a 3k marathon.  I’ve been busy grocery shopping, cooking, hanging with friends, spending quality time with my parents and my dog, enjoying the weather, and today, I was pretty productive and proud of myself.

My parents finally went to Sojo Spa, which I was happy about since I was worried they would just never use the gift certificate I got my mom for her birthday last year, and that it would be too cold soon for them to go.  Thankfully, Sojo told me their certificates don’t expire.  What made me happier was that my parents thoroughly seemed to enjoy their time there relaxing in the saunas and spas, and also the beautiful view on the Hudson River.  They also enjoy the food I cook and the things I buy from the grocery stores, and that makes me feel happy to feel useful and to be able to contribute more now that I can afford to health-wise.

I have categories that I have to pay attention to, such as my nutrition and exercise, finances, social/fun activities, and goals towards my career.  I’ve been feeling pretty good in the nutrition and exercise category, although I could do better.  I seem to have hit 104.8 lb today, even though I mostly ate fruit and veggies and chicken noodle soup.  I’m trying to taper off all the sweets I splurged on since I could eat sugar again without being diabetic.  I would be happy at a 101-102 lb range, and also because the steroids I’m on have fluid retention in my cheeks, neck/jawline, back of neck and stomach.  I feel slightly unattractive, but I know there is potential to get stronger and change those things, so I feel hopeful and motivated to be more in control of my diet and exercise now.  The only thing I think I am suffering most in now is finances, but it’s not like I’m living in poverty.  I just need to stay on task for the skills I need to build up in order to eventually get a job next year.  There is a lot I can learn independently these days with the internet and all the free resources.  I can’t wait for the first trip I can take with a friend next year too!!  Been planning out a ton of itineraries lately and bucket list.  It’s so exciting.

I’ve been savoring many moments lately, appreciating every hot shower I take, appreciating that I can wash dishes even after I cook because I now have the energy to, and being grateful that my parents worked hard their whole lives to save up so we could live in a beautiful house with a nice deck, plants, and a big backyard.  It has become more and more apparent to me just how blessed I am, that every single thing I own and have is not anything I “naturally” have a right to.

I started watching the new season of Terrace House, and I really enjoy it so far.  There is something really zen and relaxing about this show.  I also have been making an effort to study and read up on some coding for at least an hour each day.  Today, I spent about 2 hours practicing Op. 10 by Chopin, a piece I’d always wanted to know how to play by heart, and also playing with Moonchi.  I also spent some time reading “The Chinese in America” by Iris Chang, a book I’d borrowed from the library for a few months now and never truly got around to.  It’s very interesting, although not necessarily a relaxing or fun read, it’s very informative.

Enjoying Life

It’s really easy to be stuck in a state of anxiety these days, and my sleep has been pretty inconsistent.  Whenever I have so much as a headache, my state of mind goes into panic, thinking it’s the first step towards rejection or infection, and the thought that I could easily land in the ER again tomorrow.  I’ve been trying to take it day by day and relax more, and the upside is that I enjoy every little good thing, and I am more willing to live in the moment and train myself to stay in the present.

It’s a bit hard to find that balance between staying cautious and careful especially in public (i.e. wearing a mask, staying away from crowded places), but also not to the point of being miserable and being fearful of enjoying life.  I’m happy to listen endlessly to Spotify because I can focus now, without nausea or feeling overwhelmed by the sounds while in pain.

I’ve had a constant headache these days, but noticed that it goes away when I go out, either for a daily walk or just to hang with a friend.  Every week, I look forward to little plans like catching up with someone, eating new foods, cooking different meals, writing and planning itineraries for future travel, and possibly grad school in a new environment, or studying towards a career goal so that I am more prepared when I can start actively going out in six months.  I am super excited to go grocery shopping by myself, buying bubble tea, eating mozzarella sticks and all the foods I couldn’t eat before.

Each day that I am not feeling ill is a blessing, and I am constantly reminding myself of this; it has been the upside thought when I am feeling anxious and stressed about the future.  Train your mind to focus on the positives.

Happy Fourth of July, 2019! *** (<- fireworks)

Today was a really good day, from beginning to end.  It’s been a pretty long time since I’ve had a solid good day where I wasn’t constantly sleep-deprived or worried or just somewhat restless and anticipating the next bad thing.  I just lived in the moment, and it was awesome to forget all the things I’d been thinking about nonstop. And it’s so nice to hang with somebody where it’s just effortless and fun, even when doing boring things.  Aka, my best friend.

First, we watched Avatar with our other friend online for about 1.5 hours, a solid few great episodes ending Season 1.  Then got ready to go out for a bubble tea and grocery shopping trip.  I’ve been trying to push myself more, and find active reasons to go out and move around more and exercise.  So I grabbed my portable oxygen, and we went to the new bubble tea place to try it out.  This was my second trip, and I wasn’t impressed with their salted cheese drink… it was just ok, just not something I’d crave in the future.  And also more expensive than I cared for.  Then we impulse-decided to go to Sunmerry and satisfy our craving for the best salted cheese green tea, only amplified by the mediocre salted cheese drink we just imbibed.  With that first sip, the world was right again.  Then we drove to Hmart to grab dinner, of which as we were standing there pondering, the sushi became 50% off, what a win.  Then we went hunting for her ingredients, and I also found an ube extract that I can use for future ice cream flavors and for cake!  So excited to try new things- I’ve got the Philadelphia Teaberry flavor extract “saved for later” list on my Amazon account- that’s next!  (I’ll also be receiving my cruelty-free bareminerals make up and metal cookie/ice cream scoopers soon!  That will make my life easier.)

Grocery shopping took a pretty long time, and I could feel my energy waning and burning up.  Finally, we sat down for a bit and then ran into a slight bit of traffic on the way home, due to all the pedestrians and police officers piling around the streets, hoping to catch some firework sights.  Then, after some rest, we set off fireworks on my driveway, which was a pleasant end to a pleasant day with good company ^_^

Birthday Blessings

I am officially 26! … I have graduated from the bracket of age 18-24, occasionally 18-25.  Apparently I’m not truly “old” or in my “late 20s” until I’m 27.

I feel really lucky to have wonderful family and friends to make me feel loved.  Even though one could argue that my quality of life has gotten worse, that is only physically.  Mentally, I’ve become stronger, not without the help of therapy.  My perspective on life has changed, and I’ve grown more hopeful and better enough to fight for a future that could improve my possibilities of things I could experience, a life that I had only imagined since I’d grown up.  I’d be able to run, hang out with friends an entire day without feeling exhausted, I’d never feel short of breath again from walking a couple blocks or walking up stairs, and I’d never have to feel that dizzy, wobbly, bursted feeling whenever I did try to push that boundary.

I was pretty satisfied with a casual hangout with my college friends last weekend, and determined to enjoy the present for all the happiness it offered.  I kept getting expected and unexpected love, which included 3 delicious cakes, two books, a Nintendo Switch, a Nordstrom gift card, a heated blanket, balloons, flowers, and a lovely Cajun style seafood dinner with family.

My heart is full, and all these memories just remind me not to take anything for granted, and to keep trying my best for an optimal future with the people who matter most.

P.S. Got another last minute visit from my friend and her baby today (Tuesday)!  He is growing up so fast, this is my first time seeing a baby every couple months, and it’s crazy to me how quickly he picks up things and how beautiful of a child he is.  I also have firsthand appreciation of a mother’s full-time work in looking after another human being.  They gave me an orchid plant and another birthday balloon!  Whoo-hoo.  For reals, most of my life I was bitter and resentful of anyone who I thought was a friend but ended up not being there for me.  It may be because of my change in perspective, but all I feel is joy in mattering in other people’s lives, and that I have friends who offer to drive me to UPenn at all touches me.  We don’t know if we have another minute, day, week, years, or a lifetime to spend with our loved ones.  I’d always been on a rush to live as fully as possible whenever my body allowed me, and it only makes me more determined to live longer and healthier because now I have fully understood the meaning of life and my place on this earth, and I will not take it for granted if I had a second chance.

Lung Questions and Stresses

  1. Since my diagnosis is obliterans bronchiolitis, with a lung transplant, technically should be cured?
  2. Would the lung function immediately be high, or would it be low and slowly improve over time?
  3. Two incisions under boob (video assisted thoracic surgery?  or one across?  Dr. Cantu had mentioned two incisions which heals faster)
  4. How would we know when we can go off the ventilator?
  5. Are we very conscious the days following surgery?
  6. Chest tubes I heard are painful ?
  7. Dr. lee mentioned some improvements made since the time I got evaluated 2 years ago- can you give me some more info on that?
  8. Support group —> particularly for parents; and info session link.
  9. How would the cold affect my new lungs?  i know sick people are risky, how would that compare to cold weather?
  10. Dr. lee would present to case, then would i be activated on the list?
  11. When we get the call for a lung transplant, do we get to know what the age is of the donor, besides high-risk factors?  What are the determinations for a qualified donor lung?
  12. What is the opinion of the lung transplant’s team ?
  13. Can I go skydiving?

215 662 6200, press 3 for lung team

Emergency call 215 662 4000, ask to be connected to provider on call.


I think because I’ve had therapy for 4 years, I’ve gone through the 5 stages of grief.  Obviously, I’m not “ok”, but I’m okay enough to understand and accept that this is what I have to go through eventually if I want to live.

My mom on the other hand, is definitely going through all stages of grief.  I think even though doctors have told her in the past, she was always in denial and firmly kept believing that there were other things she could do to maintain me where I was.  Like giving me chinese medicine, having me avoid certain foods, and being upset at my dad because he didn’t move us to a warmer climate (California).  While it may be true that that that could’ve helped, or prolonged my diagnosis, it is also true that that would not have been a cure at all.  Functioning at 19% was a miracle for the time that I’ve grown up, but I had never known otherwise.

I’m really worried about my mom and how my parents will handle this, particularly if it goes south.  She kept having a meltdown and saying that there’s no point in living without me, that her meaning in life was for her kids and her family.  It is really burdensome for me to hear this, and part of what is making me uneasy and hesitant to tell the lung transplant team that I’d like to move forward.  Her stress is understandable, but it definitely is bouncing the stress over and over between us.  I want her to separate our lives a bit, because like Michelle Obama said, you are only responsible for your own happiness.   My acceptance and peace that it could all end up okay was faltering, and I ended up having a terrible nightmare of me being chopped into pieces like ham, and being sewn together with body parts of another person.  I saw blood on the bedsheets and all that, it was pretty horrifying.

I also had doubts that I’d have the strength and determination to swallow all those pills daily for the rest of my life.  But of course, when I thought of the bad things, I forgot about the good things, and vice versa.  I was trading in my life now, for a new life where yes, I’d have different risks and complications, but I could be able to breathe and run and dance and travel.  I think I would feel superhuman at that point.

Also, the cabin fever is really wearing me down.  Every winter, I feel like I’ve lost my mind, and wonder how I was able to make it through each year. Quite honestly, the quality of life imo is appalling.

Musical Awakening

I just had a really fun and good night.  After years of starting to really resent the piano and classical music in general, tonight I dragged friends along with me to a low-key performance in Princeton, and it reminded me of how much I loved music and playing.

I don’t know, I always hesitated a lot to label myself a musician, because I felt again like I was lacking in confidence and being a stage whore, which you kind of have to be natural with to a certain degree to enjoy performing for others.  But I definitely have a deep connection and to music when I’m in the zone, and with some encouragement, I went up after the concert to mess around with the piano, and I totally fell in love.  The piano is a Mason and Hamlin, and it just sounded so beautiful I kept playing and gathered a tiny audience again.  I improvised a lot and it made me want to go back to practicing and possibly teaching and/or playing.

One of the few things I am confident is in my musicality.  Maybe it’s my emotional side but sometimes I felt incredibly sad playing the keys, but in a good way.  You feel both worn out but relieved after you’re done.  I think I’ll try to go back to composing music and/or doing covers, and recording a few on my SoundCloud 🙂

Happy birthday to me~

The time in college when I felt like all was lost and there was no one there for me, there were a few people who were there for me actually.  But I couldn’t believe it because my mind was so locked in a dark place, that when anyone actually extended a kind hand to me, my mind just kept telling me that they pitied me and were too nice to not help me out, that they were doing it not because they wanted to, but because it was the right thing to do.  I was not myself, I was the most desperate version of myself I’d ever been.

I remember rambling to my best friend and telling her about this feeling, and she told me that just because they were kind to everyone, didn’t mean their care towards me meant any less.  I never felt like I had any true worth or added anything valuable to someone else’s life.

I also kept denying that I was turning 25, because it felt like I could no longer make excuses and dumb it down to me just figuring it out in my early 20s.  My friend told me how she felt our other friend was really living the life, with a great job and a great boyfriend, like all the puzzle pieces fit together perfectly for her.  For me, if my friend had not shared her worries and her problems with me, as an outsider looking into her life, she had it just as great too:  great boyfriend, great job.

I always kind of hated birthdays… instead of celebrating myself, it brought me anxiety, it was a reminder of another day where nobody seemed to care much or reach out to me.  I’ve worked hard to shift this mindset to focusing on the people in my life who are important and here to stay:  they are not necessarily intrinsically important.  They prove themselves important by the constant actions and the relationships we work hard to maintain and cherish throughout each year for each other.    The people who care will come forward in times like this to show you love.

I hate using the word “blessed” but today I do feel blessed.  I felt mopey and was in denial of being so old.  But my friends have popped up without having to, to simply show me they matter and I matter.  Today, I didn’t feel depression even though it was gloomy and raining.

I even had positive dreams for a change and woke up feeling good.  My mom left a box on my bed, and I found a dainty beautiful necklace inside.  My friend showed up last night with a cake from one of my fave places, and today my friends took me out to dinner and then we spontaneously visited another friend’s house and played intense games of Mario Kart.  I just don’t remember the last time we laughed this hard at stupid things.  Another couple friends drove to my house at 11:30pm to give me bubble tea and wish me happy birthday.

I also have my puppy.  It was a good birthday. #Blessed.

P.S.  The birthday celebrations continued!  Yesterday (Tue. the 27th), my friend treated me to dinner and we got drinks (I got some odd bourbon pear cider thing), and THEN she told me she also got me a gift she forgot to bring and donated a lot to my fundraiser to WWF. MAN. I am just, inspired and overwhelmed by her generosity.  I GET SO EXCITED when I come across a great human being in my life ^_^

P.S.S. I am adding these PSes on the 28th today.  I got cramps.  Life sucks again.  Not so exciting anymore.

Attempting to Make A Korean Dinner Pt. 2

I’m very happy with the dishes I whipped up today for my family!  It was much faster since I only focused on 3 dishes, and we ate it with shin ramen.  I think the thing about Korean food that makes me happy is how colorful and playful it is with the variety of each small dish.  I made:

-Steamed Egg with green onion

-Pickled Cucumber <– honestly could devour a giant bowl by myself

-Beef Pancakes

I’m only going to follow Maangchi’s Youtube recipes from now on… hers seem to work better.

I’m not really a fan of grating, shaving, or frying things because it’s annoying, so I try to avoid those.  But today I tried coating my beef slices with flour and egg before pan frying it, and it was quite successful in my opinion!  My parents enjoyed it, and you can tell it’s good when most of it’s finished by the end of the meal.  I did remember to take a quick picture… here’s me with my game face on and my lucky Harry Potter shirt on, and then the actual dishes, topped with leftover bean sprout banchan from the day before:

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Notes to self:  need to do the steps more carefully for the beef pancakes, and coat with more flour so there’s a clearer egg casing on the outside, also try to slice the steak thinner.


Tomorrow’s Banchan Attempts:

-Potato Redemption

-Eggplant with a different recipe

-Seafood / veggie pancake

 

Storytime: That Time I Got Robbed and Other Musings on Gratitude and Empathy

~StoryTime~

There was this one time when my parents and I were on vacation in Canada and my mom and I had gotten into a fight the previous night; I was about maybe twelve years old.   The next morning, we ate at the hotel complimentary breakfast with the expected aftermath of awkwardness in the air- I kept my eyes lowered to shield my puffy red eyes under my hat.  There weren’t many other people around, but I remember seeing two tanned men sitting near us at the next table.  I was in a foul mood, angry with the world and still upset at something my mom had said earlier; my feeling ashamed reflected clearly in my flushed face.

I was so lost in my own world of sulky thoughts that I only barely took notice that my mom had left the table to get more food.  Soon after, my dad also got up to head to an aisle leading to the men’s room, leaving me alone.  The next minute, I was whipped out of my thoughts by a man who approached me, pointing furiously towards the direction my dad had left in and jabbering in a foreign language.  His panic was infectious.  The first thing that came to my mind was that something had happened to my dad: he had a heart attack, he had passed out, there was a fire.  I hesitated and stood up as the man bolted off – confused, I wondered if I should follow him or call the police.

Next thing was my mom’s alarmed voice; she had come back and immediately exclaimed, “Where’s my bag?!”

I glanced around to the chairs around me, and only saw mine.  That was the moment  I realized that I had been hoodwinked.  The men who were sitting near us were gone.  The police arrived and questioned us, and after watching the security footage, confirmed that the two men had dashed out the backdoor.  The police told us that it was one of a few cases that had happened recently in the neighborhood hotels in the same exact fashion.  The next hour was filled with my mom calling various places to cancel her credit card accounts, phone accounts, and anything else the police advised her to do.  My mom’s camera, phone, and unfortunately, more than half a thousand dollars cash had been in her favorite bag.  She said she had forgotten to remove all the cash since her recent trip to Taiwan where she wanted to exchange some of it for Taiwanese money.

The shock that had hit all of us that early afternoon had us immediately forget, or rather, let go of any ill feelings harbored towards each other.  I remember feeling a mixture of emotions.  I felt guilty that I had not watched our things more carefully, that I had so naively been fooled by that guy, who must’ve distracted me to one side so that his accomplice could grab my mom’s bag to the other side of me.  I felt a bit regretful that so much money had been lost, especially since my younger parents worked hard to save up money.

I also felt tremendous relief that nothing in fact, had happened to my dad; he was okay.  My mom was okay, I was okay, we were all okay.  Nobody had held me at gunpoint or knifepoint threatening to kill us if we hadn’t handed over our possessions.

I also felt the weight of grudges just a couple hours ago melt into incredible gratitude, realizing by comparison the full pettiness of my sulky world.  One argument was a bad grain of sand in the spectrum of our lives.  Even though I don’t count myself as particularly religious, I remembered thinking that this incident must have been God’s reminder to me to wake up and understand that much worse things could happen at any given time.

We really tend to see what we don’t have, and what others do have.  Even on days where I’m in tremendous pain physically or emotionally, or my car broke down,  I would just think, if only I didn’t have to deal with this shit.  How much better the day would be if I just wasn’t in pain, if the car just worked and I could get to my friend or my groceries.  That’s how we see that the ordinary, “boring” events are actually extraordinary.

Today, some tragedy could’ve happened that left my family homeless.  Today, I could be so destitute that I don’t have enough money to buy dinner.  Today, I could’ve lost a loved one.  Today, I could’ve found out someone I loved didn’t love me back anymore.  Today, I could be feeling so depressed that I want to kill myself.  Today, I could be lying in the hospital again, just wishing that I could sleep in my own bed and get a hot shower.

Today, none of those things happened, and I did get to feed myself, sleep in my own bed, and take a hot shower.

I was in the car the other day and musing over the whole “glass half full, glass half empty” cliche.  Maybe we’re missing the point when we look at it that way.  Maybe the truth to finding Zen and acceptance of everything around us, including the shitty parts, is to see the glass itself.  That the glass exists at all.  That we have a glass.  That we have water at all.  It could all so easily be nothing, just empty space floating into more nothingness.


-Just a passing thought about how to find happiness and peace since that is something I’ve struggled with my whole life.

Reminder though, that even though we should strive to be more appreciative and notice all that we do have, it’s still okay to let yourself feel the sad parts too.  We’re wrapped up in a society that expects us to feel fine all the time or try to get us there (“Feel better!” “You’ll be okay” “I’m sorry” other crap etc.).  Is that true healing?  No.  You have to walk through the tunnel to get to the other side, there is no shortcut.  You can’t magically Apparate or sprout wings over the tunnel.  What we can do for each other?  For true empathy, be there for one another.  Rather than a “Feel better”, I want to live in a society where we hold each other’s hand.  We offer an embrace, we tell them yes, what they’re going through sucks, but I’m here for you.  I will walk with you through the tunnel.  You’re not alone.

There’s a difference between finding pleasure in sulking in misery, and brushing off any pain like it’s nothing.  Validation, entitlement, to your feelings… I guess it’s a bit of a fine line sometimes depending on perspective.  There’s a balance.

I’ll admit that this is one of my faults too.  I’m a hypocrite, because I have told people to “feel better” before.  Because when I feel their burden, I just can’t.  I can’t even handle my own burdens sometimes.  “Put the oxygen mask over yourself before helping others put their masks on” <— wise words of a flight attendant.  But I’m working on it, and I wish more people would just give more of a shit to be honest.


Today’s Obsessions (Music):

-Heaven by Julia Michaels

-Sacrifice  by Black Atlas & Jessie Reyez

-Wait by Maroon 5