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 ^_^

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FOOOOD. May 4th, 2019: almost officially listed: Updated

I’ve been trying my best to keep busy, with emphasis on activities that really require my focus and wholeheartedly occupy my time.  The main activities have been alternating between cooking, baking or making ice cream, and playing Mario Kart.  I’ve also been somewhat obsessed with tiny house videos on Youtube.   However, my parents are now marathoning Game of Thrones, partly due to peer pressure and curiosity from hearing about it, and partly because my brother managed to get my mom hooked last weekend when she visited him.  Even though she doesn’t approve of the gore and the nudity, the story is just too good to ignore.  So now we are binge-watching when we can, and it’s nice to be invested in something together.  My parents are also amping up on gardening, and full out mulching, buying plants, a gate for the deck, and decorating the backyard.  I guess it’s our way of dealing with all that’s happening and trying to continue living life as well as we can.  I’ve always had to see the doctor about once a week for vaccine updates (hepatitis b, ugh, 6 doses total), and for my weird hives allergy.

Otherwise, I’ve also been reading up on books I’ve saved on my list for awhile now, especially regarding Pulitzer Prize, or New York Times bestsellers.  I don’t know why, but my curiosity with learning more about the Holocaust has now expanded to other war-related topics, such as Iris Chang’s book regarding the Nanjing Massacre and Chinese history in America, and currently I’m reading “Gulag: A History“, which I had no idea was about Russian concentration camps, but it’s weirdly interesting, although appalling to realize this is real history that happened to people.  How can so much suffering exist?  It’s almost like what’s the point of living a life of constant starvation, imprisonment, and fear?

Back to baking and ice cream making, which are the newest and least experienced activity I’ve taken up.  On the plus side, we have fresh desserts all the time now since I make it a point to attempt one recipe per day, or every other day (cooking counts too though).

I’ve made korean cold somen noodles with the sauce and cucumber and eggs, SO GOOD, my fav new dish to eat for the summer.

Baking:

  1.  Matcha Mochiko Cake:  3.8/5, 3.2/5
  2. Matcha mochi with red bean:  3.5/5
  3. Pound cake muffins:  3/5
  4. Sugar cookies:  4.5/5
  5. Golden raisin oatmeal cookies:  4/5
    • criticism:  not bad, not particularly exciting either
  6. Carrot cake with cream cheese frosting:  4.5/5  (2x)  
  7. Japanese cheesecake:  3.7/5
  8. Dark chocolate brownies:  3.5/5
  9. Castella cake (Japanese honey cake):  4.3/5  (2x)
    • https://www.justonecookbook.com/castella/
    • criticism:  slightly dry.  brown sugar visuals isn’t as clean as white sugar
    • made twice, second time used white sugar, and also it took 50 minutes, not 35 minutes for my oven.  Leave oven ajar for about 5 minutes.
  10. Jenn’s chocolate chip cookies:  4.6/5
    • criticism:  inconsistency in choco chips, and too few. a couple slightly overbaked
  11. Chocolate Crinkles II:   2.8/5
  12. Japanese cheesecake again:  3.9/5
    • used springform pan this time, better.
    • criticism:  didn’t rise as much as expected, fluffier than first time, but still not fluffy enough- oven temps are possibly too low, and/or took too much time to set up parchment and pan after whipped egg whites.  sides were overgreased, a bit oily/soggy, and flipping it, it fell apart, but overall success.  Would not do 300-250 degrees again.  Try 320-285 degrees instead.
  13. Sopapilla (Mexican cheesecake pie): 3.5/5
  14. Jjinppang (Korean red bean steamed buns): 4/5
    • https://www.maangchi.com/recipe/jjinppang
    • criticism:  didn’t wait 30 min for buns to rise and become fluffier before steaming, did not close buns successfully, flour slightly got dry
    • very ugly but delicious
  15. Scones + Lemon Curd:  4/5, 4.5/5 
  16. Japanese purin custard:  3/5
    • House brand – Instant mix, uses gelatin, which I don’t eat anymore (animal parts)
    • Just doesn’t look that appetizing, yields 3 mini portions; parents liked it though
  17. Chocolate chip cookies: 2/5 
  18. Pumpkin Bread:  3.9/4
  19. Quiche with Sweet Onion + Sharp Cheddar Cheese:  4/5
  20.   Tres Leche:  4/5
  21.   Cheesecake (Cheesecake Factory recipe):  3.9/5
  22. Pinwheel cake:
  23. Almond Jelly:
    • using agar agar

Ice Cream:

  1.  Vanilla ice cream with dark choco chips :  A-
  2. Matcha ice cream :  C+ 
    • 3 eggs recipe
    • fatty, with 1 cup milk, 2 cup heavy cream
    • criticism:  failed to temper eggs properly, ruined texture.  overhardened from churning inconsistency, and too much matcha (3 tbs).  Also should not use egg whites
  3. Mocha ice cream with dark choco chips:   A-
    • 3 egg YOLKS
    • fatty, very rich, custard-like, creamy with 1 cup milk, 2 cups heavy cream
    • criticism:  not enough chocolate flavor, personally too creamy for me, also didn’t like dark chocolate I used
  4.  Strawberry ice cream:  A-/A
    • eggless recipe
    • lowfat, with 2 cup milk, 1 cup heavy cream
    • delicious fresh strawberry flavor!  half pureed, half diced
    • criticism:  not creamy consistency enough, slightly icy
  5.  Godiva dark chocolate ice cream:  A                                    
    • 6 egg yolks
    • very rich and creamy
    • added cheesecake and toasted almonds
    • criticism:  slightly too heavy for me
  6. Badam ice cream:  A
    • eggless
    • 2:1 heavy cream ratio, less icy!
    • added brownies
  7. Coffee milk tea ice cream:  B-
  8. Mint chocolate chip ice cream:  B
    • eggless
    • mint extract + vanilla extract
    • criticism:  a bit too sweet (1 cup sugar, less than 4 cups ratio… error)
  9.   Red bean ice cream:  A+ 
  10. Watermelon Sherbet:  B+ 
  11. Vanilla Ice cream II :  B-
  12. Cookie dough Ice cream Sandwiches:  C+
  13. Mango Sorbet:  A-
  14. Ube Ice cream:  A
    • used 1 cup milk, 1 cup heavy cream, 1 tbsp ube extract, about 5 oz. sweet condensed milk ( I eyeballed it)
    • first batch was burned with coconut milk, dumped 😦
    • deliciousss, even though the ube is imitation and a really small bottle
  15. Upcoming ice creams:

Other:

  1.  Shakshuka:
  2. Spiced Naan

P.S.  I hate how insurance companies and random coordinators from hospitals call me up whenever, so it’s like I have to work extra hard to stay distracted and occupied with other things.  They could call me at 8am, 10am, 2:30pm, 5:00pm, really now.  And not that I’m exactly “busy busy” but I’m sometimes in the middle of sleeping, or washing dishes, making dinner, or in the bathroom, and I just have to drop everything and set aside 15 minutes or however long to discuss things.  I should be officially listed Monday.  A part of me thinks I’m insane for willingly sending myself in for this kind of surgery, the other part of me can’t wait.

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.

Giving and Receiving Gifts

When you don’t know someone, it’s really hard to buy a good gift for them.  Usually, if I don’t know what to get someone, I’d rather not waste their space or my money, but if I know for a fact, or at least over 50% chance they’ll use it or like it somehow, I feel much more satisfied splurging a little.   I have no problem either with people giving me really nice or expensive gifts alternating years instead of 2-4 cheap, useless items, so that’s my philosophy on gift giving and receiving.

There’s a lot in my life that I don’t feel great about, but I do feel blessed about the wonderful and amazing gifts I’ve gotten from people, with some of them just 100% great, squeezing that usage out of every bit of that tall price.  Sometimes, they’re gifts to myself xD  But one of the most annoying feelings is splurging on something, and realizing it’s only half effective, or it breaks right away.

Sometimes they’re perfect gifts because of how useful they are, but other times they’re perfect because it’s tailor made to that individual’s needs or wants or style.

Some of the stuff I’ve gotten or given that has been A+ satisfactory and #worthit is:

Daniel Wellington watch (broken by my dog though)

Amazon Kindle (haven’t used it much recently though)

Nintendo Switch 

MacAir 

Samsung Galaxy S7 phone

Bose headphones (both times, first one lasted me 5-6 years with daily usage)

“Becoming” by Michelle Obama (usually hate keeping books, but I want to keep this one)

S’well / Hydroflask water bottles 

Helly Hansen base layer jogging shirt 

Earrings (really beautiful pair was for mother from my dad and me, looks perfect on her)

Soma Intimate bras 

Nordstrom tops/dresses 

Taiwan glasses

RavPower phone chargers

Of course, there have been many a regrettable buy as well… the time I spent $80 to add on a dvd player to my macair, and it broke within 2 years… the time I ordered a $50 dress and it was too big and I couldn’t return it… all the random jewelry I got over the years that I don’t really like but keep anyway…

It’s easy to overlook all the nice things I’ve had or given over the span of 26 years, but this is my list, and I do feel lucky looking at the nicest things I’ve ever got to own!  🙂

PS 1. And of course, not to mention, my parents try their best to support my incredibly expensive healthcare needs, which is probably the best gift I could get.  Spending money to rent portable oxygen on flights, to book a cleaner, newer hotel, my daily medications, my oxygen tank at home now, and all random other crap like a heater, humidifier, air filter, nebulizer, doctor appointments, = $$$$$.  @_@ Insurance is definitely something everybody needs, no matter what.  You don’t want to get stuck with a $60,000 hospital stay with no one negotiating the cost down for you.  sigh.

PS 2. Since this post is a bit about consumerism, besides buying reusable metal straws and using refillable water bottles, I also want to start buying from sustainable, ethically sourced clothes brands.  Also,  Quality over Quantity!!

 

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.

How to Take Control: The Parallels in Piano and Chronic Illness

As an INFJ, I am often more prone to thinking with my heart than my brain.  Oftentimes, my emotions overran calm logic, but as I’ve grown older, I’ve aimed to create an equal balance between the two in order to lessen anxiety.

Even though I had a difficult piano professor in college, I did learn some really important lessons that I applied to other aspects of my life.

One of the major things she taught me was that I was in control.  The piano doesn’t play you, you play the piano.  Often times, I would attempt to let my fingers fly across the keys, in my younger years depending heavily on muscle memory.  I learned as I grew older that developing a method of 100% precision is not possible with just muscle memory- while useful, the mind is prone to blanking out, especially when overwhelmed onstage with a thousand eyes on you. The only way to ensure no memory fumbles is not to rely on the memory.  Instead, you must perfect control over the keys, and that means studying each note, individually, as each finger plays one and expectantly lands on the next, not just through muscle, but through mind.  In conclusion, sometimes “winging it” is not the right plan – sometimes, you just gotta prepare as much as possible in as many concrete ways as possible.

When you focus your practicing, you are also wasting precious time and efforts if you are playing a piece from beginning to end over and over again aimlessly, with no conscious intention on what particular segment needs to be fixed, or breaking it down by specificities:  what is the greatest technical pattern to practice in this section?  What is the tricky fingering in the left hand here, and do the dynamics between the first and second contrast each other well?  You practice intention as much as the physical action itself, which means you can greatly improve performing your piece by listening to 10 different artists’ recordings and interpretations, studying the pages away from the keyboard.  Basically, exercising intent and logic is just as important as processing your emotions and feelings.  

So that’s what I’ve been applying to in terms of the management of my chronic illness.  Both onstage and offstage, I am susceptible to bouts of anxiety and panic attacks.  There are factors both in your control and out of your control, and the most you can do is prepare to the best of your ability what is in your control, the rest is out of your hands.  What have I taken control over?  I guess I feel the culmination of all my work leading up to this point right now.  I’ve felt overrun to a pulp by all the insurance crap because there are so many complicated pieces to it and it’s confusing af.  I’ve felt completely overwhelmed by the whole decision making on my quality of life, the goals I want to achieve and the health problems that are obstructing my way to those goals being achieved.

As a feeler, I don’t really have much problem talking about my problems and connecting to others emotionally and empathetically.  I actually may have too many feelings for my reservoir for feelings, so the first step in this journey was to control that to the best I could, which led me to a concrete plan of:

  1. Therapy – I have anti-anxiety medication which has helped tremendously despite my hesitation to take it. It has maximized my productivity to tackle shitty feelings when shitty things occur along with boring, complex adult things like insurance, and more emotional control so that I can put more energy into more motivation and focus on completing tasks that are rarely fun or exciting, but necessary.
  2. Education – I have spent a lot of time to inform myself as much as possible on whatever the problem is.  When you have a greater understanding of things, you have a better grasp on things, and therefore will lead to less anxiety.  I have poured hours into reading up on lung transplants, statistics, and asking questions on the internet and to my transplant team, who I trust very much, with my life (literally).  Just like organizing and breaking down a piece of music to conquer it, I have taken time to reflect on mini goals and research.  What are the risks, what is the medical process, recovery time, what can I expect in the beginning, middle, and end?  What are the finances in terms of insurance coverage, who is my support team, and what are medical opinions on how I’m doing?
  3. Non-Medical Goals – social life, family and friends, other goals like work/career, travels, relationships, personal habits and new skills to learn, what are my priorities and how do I break down the steps to achieving them, one day at a time?  What are my passions, what is my mission in life, how do I want to impact the world?

While playing with heart and passion is always an important factor to your success as a musician, conveying emotion also requires technique and technical methods to break it down efficiently.  So here I am, trying to meditate a bit and bring in some calm, and today I completed some insurance tasks.  To give an idea, here are some of the things I did today:

I liaison between my dad’s company adviser, my dad, and my therapist, the insurance company, and my physicians to produce a letter and other documents proving that I should stay on my dad’s insurance plan after the age of 26;

I called my insurance company’s behavioral health department to confirm the steps to receiving teletherapy care with my therapist;

I sent in a request to the insurance company to update my PCP for a new card;

I reorganized my list of medications and verified their approved pick-up dates with the pharmacy, also re-ordering one of them.

I proceeded to watch Hasan Minhaj’s correspondence dinner on Youtube, began reading a new book (“The Bonesetter’s Daughter” by Amy Tan), did my daily 15 minutes of Korean, spent some time chatting with my best friend, and am now going to clean out my bag and organize everything.

The greater process requires equal parts to yield optimal results.

Be your own fucking boss.  Get in control.  Even if often times, it doesn’t feel like it.

 

 

Ending 2018 with Hospitalization

I believe the last time I was hospitalized for an RSV infection was nearly two years ago, in January of 2017.

I’d been going relatively strong for 2018, but alas, one of my expected fears became reality, and Christmas weekend I increasingly felt off until I was able to see my primary doctor on Wednesday, where unsurprisingly, she took a listen and sent me off to the ER.  It was more apparent to me that my body was failing me this time, as by Tuesday night, I felt like I was suffocating from standing up.  I actually felt like my lungs almost disappeared, and deeply aware that there wasn’t much oxygen exchange happening.  My shoulders were working double time to breathe for my lungs, and I kept bending over. I felt like I was perhaps dying, and prepared a few things before most likely heading to the ER.   My doctor said she couldn’t hear movement at all in my right side and that there was a faint wheezing on my left, which probably meant I had pneumonia, and that I looked like I was going through respiratory failure.

We arrived at Morristown Hospital around 4pm, and it was less hectic than the last time, but still a shit ton of people waiting around.  The process was so slow it felt agonizing, and I felt if I were going to die, I would have in that waiting room.  My oxygen tank ran out, and I felt so terrible that any movement felt like I was making myself run 5 miles, except I couldn’t even gasp for air because there was no air to move in my tightened airways.   My dad thankfully bugged them to move me up and give me another oxygen tank in the meantime, and finally we were moved to another waiting room area, and then wheeled to one of those stretcher curtain “rooms” where they drew blood, stuck an IV in, and I repeated answers to the same questions to about 7-8 different people.  One doctor felt that I may or may not need to stay overnight, and a few hours later, I was wheeled into a proper room.  We were there just over 24 hours when a respiratory room opened up, and there they put me on steroids and antibiotics for the first 2 days, then some doctor came and reversed that decision.  For the most part, I really liked all the nurses and doctors except for one douchey tall and young doctor.  They much improved from 2 years ago imo.

There was nothing to do but wait it out to slowly improve (hopefully).  The amount of shittiness and exhaustion I felt made me thankful that while I’d been complaining about being out of breath going up the stairs, I was now aware of what it felt like to be short of breath at rest too, which was beyond terrifying and all I could focus on.

Anyway, I was hospitalized from December 26, to January 31, 2018.  A couple people visited me, but it was very low key.  Very glad I was able to be discharged before the New Year, even if I somewhat begged for it.  My best friend came over, and we passed a very chill new year’s in my family room.  My brain has been foggy all week, so I didn’t really have time to process that it’s 2019 now.

I spent the past few days in bed on oxygen almost 24/7, and still feel winded from getting up to pee.  My oxygen drops dangerously to 88% when I do so, which is really bad and I start to feel a hint of that suffocation.  I need my normal baseline back off oxygen saturation at 96% rest, and 90% in motion.

Overall, I’m pleased with 2018, it’s been a relatively good year for me and my family and friends, so I hope 2019 is just as good or better.  The particular reason why is probably that I have zero regrets.  I usually stayed home during the winter months because  was so careful not to risk catching anything, but that’s not really living.  The whole cliche of alive, but not living.  My particular anxiety was that I’d miss my friend Lauren’s surprise proposal since it was outdoors and the weather was raining.  I considered skipping it, but couldn’t bear the idea of missing something so important.  I don’t think I got ill from that event though, but it was such a great day that I think it’s worth getting sick for. One of the worst feelings is fomo, especially caused by something you have absolutely no control over, and is a repetitive cause.  There are still so many things I’m scared about in my future, like dying, and experiencing what I felt this week on a permanent basis.  But I also grew a lot in self-love and general life experience.

I don’t pray for luck or success, I pray for the motivation and inspiration to stay positive and gain success.  If I could have a fraction of Claire Wineland’s spirit, I would consider myself blessed.

 

Adulting

Hm… so I still feel like I’m behind on a lot of things, like understanding how taxes work and what the right kind of skin ritual I should be doing at night.  But I do feel like I’ve come a long way since college.  To be frank, in the past two years I finally wrapped my head not only around therapy, but accepting that I could use medication to help with the crazy amount of depression and anxiety I had been struggling with.  I felt like I was mentally drowning so much of my life that it almost made me accept that this was the norm, and that either everyone else around me felt the same and was just handling it much better, or that I was very different and there was something wrong with me.

I still feel emotions of course- sometimes I get a bit down or upset, sometimes when I focus on my health and how different my life could’ve been if I hadn’t gotten ill, where I could’ve been.  But it’s nowhere near how I used to feel- hopeless, trapped under this giant heavy cloud that was drowning me of any ambition and motivation.  It’s therapeutic to write on here for how much of my mind is reflecting on the “negative” aspects of my life, which don’t play out too well with everyday conversation and interactions with people.

That said, adulting.  I used to feel completely naked and vulnerable whenever I had to ask someone for help, like talking to professors for understanding and assistance in my grades and absences that go hand in hand with chronic illness.  I used to feel my whole day ruined when I forced myself to trek short of breath anywhere:  to class, to the mall, just because I wanted so desperately to act as normal as I looked on the outside.  It was too much to accept how severe my health was, and that it would always be this way until it got worse.


I’m worried about getting ill and losing my job, it can make me panic to realize that my youth is leaving and my chances at a youthful life are slipping away, and even worse that these struggles will never leave- I have to simply adjust my perspectives.

But for now, I still have my job, I’m still learning to speak up about my health and reasonable accommodations for it without feeling ashamed or acting like a victim, and that so many things are out of my hands.

This week, my parents left for Taiwan.  I hope they’re having a lot of fun and enjoying their 60s.  That said, it does make things a bit harder for me, such as expending a more limited expectation on the mundane chores I have to take care of everyday- cleaning up after my dog, cooking, washing dishes.  But it’s nice being alone, so that I don’t have to talk to anybody, and I can do things at my own pace without judgment.  I rest when I have to, and give a bit of energy here and there to manage it all.  I’m trying to eat up all the food left in the fridge by myself before it all goes bad, so I’m stuffing myself with two bananas a day, eating perishable foods even though they might not be my cup of tea.

I went to UPenn Tuesday, and my lung doctor said the antibiotics appear to be working and the inflamed white lining around the hole in my lungs seems to be thinning out comparing it from April to August, which is great.  I do realize now that I’m getting closer to my usual baseline how it was definitely worse last year.  When I took deep breaths, the ceiling of my breaths were lower, so I got short of breath more severely and quickly, and as a consequence, I got more fatigued and uncomfortably short of breath/dizzy.

I was annoyed by this person who was administering my breathing tests, and he was super cheerful and when he opened up my patient charts, he was all “omg, I can’t believe you have severe COPD?? No way, you don’t look sick at all.”  I wasn’t going to say anything, but it really irks me when I get that.  So a couple seconds later, I told him “I mean, you can’t see lungs on the outside, can you?”  And he said that’s true.  He tried to make amends by saying that some people spiritually seem really low and defeated and carry it with their aura, and that I don’t. So I guess that was a slightly nicer spin.  Having these comments said to me always fed me imposter syndrome and made me feel like I was playing a special card to ask for help, because it seemed like rarely did someone believe me when I asked for help.  It’s really frustrating.

My friend from college came to visit me Friday evening, I really appreciate when friends make an effort to stay in touch with me, even if the time we see each other has stretched to a year apart.  I saw my neighbor/best friend briefly so she could help me eat some food in my fridge Saturday, then she encouraged me to go to the gym before it got even colder Sunday, so I did.  After I returned, I was again thankful that she gently pushed me to go while it was relatively nice outside (60’s).  And now, today is Sunday.  It’s cold, my nose is cold even with my sweater and socks, so I just start to feel lethargic and want to bundle up in a blanket and not move at all.  I’ve managed to be sort of productive though, and have made headway on cleaning up the bathroom and my dad’s room, and then eventually will put away my summer clothes in my room.  I’m throwing away my old pill bottles, making lunch, going to clean up the dishes soon, and then will go back up to finish cleaning and taking a shower.

My dad’s room is full of random things and it’s all over the place at the moment, which is ironic because he’s the cleanest in our house and regularly vacuums the entire house  down.  I know he’s been super busy and overworked lately, so I think now that I have energy to recharge this weekend, I am able to go and organize some of it.  My mom cleaned her room and my room before she left, so it’s nice because I am pretty crappy at folding the bed, and that takes more energy than other things.

I’m also busy cleaning up my dog’s poop, which is like 3x a day but feels so much more frequent.  When I have to raise my body in any sense vertically, like bending down to pick up her poop, I notice that it affects my heart rate much more than other movement.

Anyway, that’s all for now.

Insecurities

It’s come to a point in my life where I feel like I’m living two lives.  I try really hard lately not to separate the two, but there are always certain moments that so clearly remind me how there often feels like two separate realities.

When I’m alone playing Toon Blast or Youtubing, it’s pretty chill now actually.  Sometimes when I’m stressed, being alone made it worse, but lately because I have work and some sort of rhythm to my daily schedule, being alone is now nice to unwind.  I find ironically, that the moments that remind me most of my circumstances is when I’m at a party and hearing them talk about their lives.  Although my confidence has definitely grown throughout the years, the insecurities suddenly make themselves apparent through the most subtle and casual conversations. Couples outnumber the single members, and all the talk surrounds wedding dates and engagement plans.  I find I have nothing to contribute, and I’m also feeling insecure that my personality does not blend in seamlessly with theirs.  I always feel like I’m the misfit in any group, and sometimes I really think it’s a me problem, and not a general “it is what it is.”  Perhaps I am not engaging enough, outgoing enough, I don’t have that spark that naturally draws people to me.

And while everyone chatters happily about their career, their significant others, their last trip abroad, my mind browses quickly through what my own contributions to the conversation could be, and it comes up with all negatives.  Yes, I can say I have a job now, but it still feels like it’s not enough.  I start to think there’s something wrong with me.  Part of me is too introverted, the other part just doesn’t have the energy, literally, to make my presence known and memorable.  I’m the floater who’s sometimes there, but no one would miss me if I wasn’t.

And if you really wanted to know what’s going on with me.  I’ve been going to therapy to become comfortable with the idea of my decreasing health and that I must become mentally prepared to die, whether that’s in the next year, 5 years, or 10.  How’s that for a party downer?  Even as my own friend is talking about her wedding, this thought seeps into my head, what if I don’t even make it to your wedding?

Life in the 20s

Yeah… just a blink ago, my brother remarked on how he was starting to attend weddings and other adult things that seemed 20 years away.  20… LIGHTYEARS AWAY.  Cause now it has reached me.  Yep. Me.

Newsfeed on facebook, all day, e’eryday, people be getting engaged with their couples pics and bling bling rings, and even POPPING OUT LITTLE HUMAN BEINGS.

Like, time is supposed to be slow, but it is speeding up lately.  On a scale of MY personal level of stress, it’s been a solid 5.5/10 lately, which is not too awful.  But mostly, I think it’s probably a topic I’ve written about quite a few times now, and that’s how everything around me lately especially with my friends is related to couples, and relationships, and engagement/wedding talk.  I feel like maybe I’m exaggerating, but then the topic comes up and I’m like nope, I am not imagining this.

And I want to be chill, content with who I am and my own journey and all those philosophical quotes that remind you about self-acceptance and all that, but then I have so many moments where I cool down and all the doubt and uncertainty of the future floods in.  I’m constantly wondering now how much my potential really is in career, in how confident I am in my standards of dating, and my ability to continue trying my best to get my shit together, or appear to have my shit together, while enjoying life in the now.  And it’s really difficult – I definitely feel like I have so many to-do lists constantly, from the small to the big, like laundry, and laundry, and food prep, and insurance things, and doing that thing for my dad, and counting my finances, and worrying that all the meanwhile that I try hard to be in the now, everyone else has planned out their next steps, whether it be a trip abroad, moving in with their bf in the following year, or getting into grad school.

And while I haven’t been exhausted in that out-of-breath way too often, lately I’ve been sleeping A LOT.  Remember when I had major insomnia and anxiety, to the point of feeling psychotic?  Now I nap around 3-4 hours a day on the weekends .___. I don’t know why, and I don’t mind too much, but why am I sleeping so much?

All I can do now and continue to try to remember all the things on my weekly to-do list, and to try to go to the gym on a constant basis, stay patient on where I am in the workplace, and try to navigate and learn whatever I can.  Stay as healthy as I can be.  Find the line between ambition and satisfaction.