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:  B+, B
    • With red bean
    • With drops of chocolate spread
    • criticism:  better with red bean, tastes neither like mochi or cake, kinda unusual texture
  2. Matcha mochi with red bean:  B
    • criticism:  not blended enough with powder (clumps)
  3. Pound cake muffins:  C+ 
    • criticism:  way over-baked… super dry, and not pound-cake at all (not cake flour) due to converting cake to muffin recipe
  4. Sugar cookies:  A+
    • AMAZING, fluffy, soft, with wonderful glaze
    • criticism:  lemon flavor faded a tiny bit from glaze the next day
  5. Golden raisin oatmeal cookies:  A-
    • criticism:  not bad, not particularly exciting either
  6. Carrot cake with cream cheese frosting:  A-
    • criticism:  first time was great with crushed pineapple.  second time with chopped pineapple = less moist.  mushy and undercooked in the middle; grating carrots is annoying
  7. Japanese cheesecake:  B
    • taste is good, texture is off
    • criticism:  shrunk;  took out of oven too soon, under-mixed the batter, resulting in uneven sweetness and density.  did not use the right springform pan (I used a ceramic pan).  also wasted 7 egg whites, because contaminated bowl with three drops of egg yolk.
  8. Dark chocolate  brownies:  A- 
    • criticism:  too dark (I used 92% + 85% vs. 72%, too much salt (no need for sea salt sprinkles))
  9. Castella cake (Japanese honey cake):  A- 
    • criticism:  slightly dry.  brown sugar visuals isn’t as clean as white sugar
  10. Jenn’s chocolate chip cookies:  A
  11. Chocolate Crinkles II:  

Ice Cream:

  1.  vanilla ice cream with dark choco chips :  A-
    • eggless recipe
    • lowfat, with 2 cup milk, 1 cup heavy cream
    • criticism:  not creamy consistency enough, slightly icy
  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:  none
  6. badam ice cream:  A
    • eggless
    • 2:1 heavy cream ratio, less icy!
    • added brownies
  7. coffee milk tea ice cream:  B-
    • eggless
    •  do not use Bru (indian chicory instant coffee) next time
    • criticism:  slightly over-burnt cream, over-steeped tea, and sweet condensed milk not great texture frozen inside ice cream; CAFFEINATED
  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. Upcoming ice creams:
    • Strawberry Sorbet
    • Mango Sorbet 

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.

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4 Weeks Pre-Transplant Official “Yes” Mindspace

I am so bored… my mood was alright until the past few days.  Maybe it was because of my last therapy session where we talked about death, and a part of me just felt kinda bummed.  What if I die?  That’s just the end… and I really wish I could do so much more before my time is up.  I’m also so sad at the thought of leaving my family.  But these thoughts aren’t very helpful since they’re out of my hands.  It also could be that everything goes well and all this worrying was for nothing. Despite my hanging on to the success stories, there are so many people, young people my age who have passed away either through an unsuccessful surgery or after a year or two.

How to stay motivated and productive? IDK. I am actually tired of Mario Kart now since I play religiously for a couple hours everyday, and I am also getting road rage at Waluigi and other characters.  I’ve started trying some cooking recipes this week, but none of them made me that happy because it wasn’t super successful or delicious.  I have this weird thing lately where I keep trying to fill a void by trying new things and getting really excited, but then being like “oh that was just ok” after.  For example, the recipes, and ordering a bunch of korean instant noodles, and now looking at clothes and I want to buy everything, but I know I don’t NEED some of these items.

I have dealt with a few minor insurance things this week, and then wondering what to get my brother for his birthday.  It’s tough!  Hard to know what he would actually like or find useful.    I also finally measured my body parts so I know exactly what kind of clothes would fit me well.  I also contacted a couple apartments in Philly to get some information on the places we could stay at post-transplant recovery.

I’ve been continuously working on lessening my impact on the environment.  Steps I’ve taken the past year and recently:

  1.  Dropps – eco-friendly laundry detergent.  I can’t really tell the difference in the usage of it, but I only bought a sample pack so far.  It comes shipped in a brown cardboard box and dissolvable plastic.
  2. Hydroflasks + Swell – Reusable, High Quality Water Bottles for my family and me.  No more plastic bottles unless emergency use
  3. Reusable Grocery Bags – we got some wegman bags, but 50% of the time we forget to bring them or use them when we go grocery shopping.  Still in progress.
  4. Metal + Bamboo Straws – either reusing plastic straws that we have at home, refusing plastic when we go out to eat, and buying reusable straws instead
  5. Everlane clothes that are eco-friendly and also ethical.

Now my internet knows I’m interested in these types of things and I keep getting ads, which I don’t entirely mind.

It’s now Friday late at night, and I feel a bit better (I started this post at the beginning of the day).  Tomorrow my dad and I are going to bake and maybe go grocery shopping for a little bit.  In a sense, my dad is my best friend and the most comfortable person to be around, and he always does things for me with endless patience and tolerates my tempers.  In regards to the therapy session about death, I have decided to buy each of my family members and maybe friends a special gift, one that they will always associate with me.  It doesn’t have to be anything extremely unique or fancy, but something we had talked about or whatever.  I have decided to buy my mom a pair of earrings, because we have talked about it forever, and I want the design to be special from her other earrings, so I looked on Etsy.  I don’t know what to do about everyone else yet, but I have time.

Claire Wineland died at 21 years old after a lung transplant.  But she is my hugest inspiration and role model, because she achieved more and looked on life in a positive perspective that most people who have lived far longer will never manage or appreciate.  Time is truly short, and with that, she always enjoyed her time with her family and friends, did what she loved, started a foundation, gave uplifting speeches, and became an adviser for a movie (“Five Feet Apart”).  Like, damn girl.  And she managed to stay beautiful in every possible way.

While I’ve gone through a bum wave, I am now thinking again about what it would be like to walk more than a couple minutes and not be exhausted, to spend time hanging out with a group of friends and not have to recover the next day, to be able to explore and travel, in the cold and in the heat, walk up a slight incline or stairs and not be out of breath, holy fuck, I think the truth is everyone else is living the life of a superhero, but most people are oblivious to the miracle that they are and all that untapped potential.  The body and mind is made up of a million mini functions and organs that work together to keep you alive every second of every day.  To have zero issues in any of those departments is indeed, a walking miracle and the ultimate blessing.

What life has thrown at me, most of us will experience eventually, just I am going through it earlier and more intensely.  When faced with greater pressure and intensity, one can also manipulate the sour lemons into greater perseverance and make something bigger out of it.  I’m not sure exactly what that is yet, but I want to discover it.  Most of us are more alike than we realize; we can feel self-conscious, worry about what others think, and that can manifest itself in anything from using a wheelchair to having a pimple.  I guess in that sense, it calms me down to know that I am not that different after all, and definitely not that alone.

 

The Calm Before the Storm

03.14.19

I’ve been oddly peaceful lately… in some ways, this is preferable to crazy anxiety and insomnia, but I wonder if some part of my brain has become dumber and switched off an activation code lately.  I’ve reverted back to the days of a 7 year old relying heavily on their parents to feed them, get them things, and spend time with them.  It may be a coping mechanism, but it could also be that I have resolved on my plan for this year and just need to map out the kinks and details at this point.

For example, I am a Medicaid patient, and I had called them recently to get more information.  This week, I was sent three letters and packages in the mail from them, not small by any means.  These packets included a living will, a case manager they offered to assign to me to help me with all this confusion, and another enrolling me in a pulmonary education program.

Here are some things I really want to change in our healthcare system as well as disability assistance in common places such as work, our community, and our cities (I’m looking at you, NYC).  We should always have the automated doors, we should always have elevators or sloped walkways, especially when that poor mom fell down the stairs trying to carry both a stroller and a child alone down the subway.  These are two of the most basic disabled rights that I can think of off the top of my head, although I also think it would be totally fair to make offering straws illegal unless a disabled person requested one.  Even though disabled rights have improved over the years, we are still so far away from what is actually fair and equal.

Five years ago, I similarly went through rigorous research, but that time, my desperation and panic led me nowhere.  I messaged Harvard professors and emails prestigious sounding doctors, of which I remember one advising me sternly not to to seek any stem cell therapy centers, and to insist that I get a lung transplant.  To me, a lung transplant was the epitome of death.  Now, it is a chance for hope and a better future and quality of life, even though death is still there in the picture (I am actually going to be diving into the outlook on death for my next therapy session this week).

03.16.19

I’ve been on Youtube a lot lately and watching mostly mukbang videos, The Voice, and World of Dance clips.  But in between, I also watch Youtubers who share their lives in living with a disability, and there’s one channel that features an inter-abled couple.  I always felt like a part of me was more enlightened and more patient, and kinder, and understanding because of everything I’ve been through.  But a part of me also understands the comments that are incredulous, sometimes borderline mean, that ask how such a couple exists and is okay with handling the “burdens” of care-taking.  I think maybe a fear of mine is that even as a technically handicapped and sick person, I still hold prejudice and still aim to separate myself from other disabled people.  I remember one time in college, the disabled office told me I could hang out with the other freshman kid who was in a wheelchair.  I also remember feeling resentful that I was by default, lumped in with the other kid as if we were the same kind, and also resolving to do everything I could do to fit in with “normal” students, and not associate myself with him.  Some time later, I remember seeing him walking by, us making eye contact briefly, and me thinking he was pretty cute.  Eventually, he was walking by on a cane and often accompanied by an attractive girl, and I felt pretty ashamed for ever disassociating myself from him just because he was in a wheelchair.

I love my mom and dad, but to be honest my childhood was difficult.  My mom was always stressed out and this caused her to be very impatient, often getting angry with me for things that were out of my control, like having a poor appetite and not being able to finish meals, and eating slowly, and needing her to drive me to school everyday.  Looking back now, I am much more understanding of her experiences and struggles in raising a different abled kid, especially when neither of us really understood it, and she was already dealing with a lot of personal, separate problems. I guess despite my understanding her especially now that she is a lot more patient and calmer and we communicate more, I fear that I would be the same type of parent or girlfriend,  I would still run away or deal poorly with any signs of hardship that wasn’t solely my own.

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, 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.

To-Do Now / Bucket List Post Transplant

BUCKET LIST POST TRANSPLANT

  • Skydiving (maybe, we’ll see what the doctors say)
  • Play with a baby elephant
  • Dance classes
  • Make a vocal cover
  • Travel as much as possible – one trip with friends, as many with family as possible (see future blog post on destinations, particularly landmarks)
  • live in NYC for 1+ month
  • Check out Wicked on Broadway
  • Go hiking, just cause I can
  • Taekwondo (maybe)
  • Get a high paying job – buy my parents a really nice present (trip abroad?? Celine Dion concert??)

TO-DO NOW

  • Continue learning Korean
  • Watch Hasan Minhaj Netflix special, learn more about Saudi Arabia women’s rights
  • Continue UN online volunteering
  • Learn more SQL / data science things / Tableau
  • Read up on 2020 presidential candidates
  • Do some basic leg exercises
  • Try to gain some weight
  • … other useless things I should not to-do… like The Bachelor (darn you, Erin!), mukbangs, and Toon Blast

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.

 

 

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?

Losing My Rhythm

Yeah… trying to stay on the wagon and the momentum but instead of keeping my eye on the ball, the eye is kind of wandering and looking elsewhere, the prize is looking a little out of focus.

One day I can wake up feeling relatively upbeat and feeling that drive, but the next I’ll wake up feeling the physical aches and translating to mental energy loss as well.  I start to second guess myself and wonder if I’m worth ever being hired, and if I were, if I was ever meant to be able to hold onto a solid career and maintain it without sacrificing my health and ending up in the hospital again.

I scroll through my private Instagram, and to watch the journey of a woman close to my age go through the whole lung transplant process, and to slowly die, waiting for another chance to breathe and live, I am getting secondhand agony and secondhand anxiety:  is this the predetermined path for me as well?  The answer is yes, and yet I want to look away.  Because if I stare at it too long, then I will lose all resilience in the other goals I want to accomplish in the meantime.

I’m reading this really enlightening book called “Sapiens:  A Brief History of Humankind” and it’s a very thoughtful, well-rounded reflection that is bursting with info from evolution, biology, history, to religion and revolutions of the human species.  I have to say, it held a lot of questions about Christianity and all the strange potholes and contradictions that have always made me a bit uneasy.  But to imagine that we are truly alone in our struggles and are left to suffer mindlessly is also pretty depressing.

I feel lately like I am doing so much yet nothing at all.  Accomplishing nothing except making it to the next day relatively healthy, and trying to build at doing normal productive things like exercising, spending time with family, reading, learning, and hanging out with friends if the weather and my body allows it.  I sometimes feel proud of myself, but then I’ll look at a friend or someone else’s life, and it makes me so overwhelmed wishing so hard that I could do better, and that it is never enough.  To have a job to go to everyday, to travel with friends, to have someone hire me and believe in me and validate that I’m worth it despite all my problems.  I want to have a moment where I can look at myself like, yeah, I made it.  I did this.

What I keep reminding myself is that it is already a huge accomplishment that in comparison to my taking steroids 5 times last winter, I did not get sick at all this winter. Of course, it was at the expense of staying home most of the time to minimize risks and exposures, but it is still a good thing to stay safe.  I have spent my time wisely lately and in dragging my ass to the gym and watching what I eat.  I am almost at my target weight of 105 lbs, and I have been eating cleaner- mostly filled with oatmeal, boiled egg, chicken, and lots of fruits and veggies.

If I cannot obtain my career dream at this point in time, I will continue chasing my other, which is to push my body to the fittest it can be.  I want abs of steel, stronger thighs to walk with, my bicep and tricep lines to show when I flex, a butt, and a better posture with chest presses.  I was walking yesterday and realized that I was much more aware of the muscles in my legs, and it encouraged me to continue being persistent.  To feel like I got hit by a truck every time will be worth it in the long run when I can look at myself in the mirror and be proud of what I’ve built.  This is one of the days I can work towards in my control, as long as I don’t get sick and I keep up with what I’m doing without getting stagnant again.

My body is kind of what I deem a bad charger- it needs a lot more rest and charges at such a slow pace that while other ones are hitting 100% in 1 hour, mine is hitting 19% by then if I’m lucky.  So when it keeps hitting close to 5% and I’m getting warning signs, I must force myself to rest so I can get back up a few percents.  This has taught me to be much more efficient in the 19% I have- and while I’m at my version of full capacity, what am I going to spend that energy on?