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.

 

 

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A Wise Woman Once Said…

Aka my therapist.

One day I was rambling about my insecurities and how anxious I felt by what other people thought of me.  I was probably describing one of the many moments in which I used a handicap spot or some other form of assistance, while aware of someone’s eyes on me, observing, probably judging whether I was abusing the system or just straight up not actually ill.  My paranoia was always getting the best of me, and it’s a very vulnerable feeling, when someone’s singular subtle action or movement could destroy you in a breath.  Why do we let people control us like that? Why do we tend to care so much what other people think?

My therapist said to me at this point, that I was battling two things.  The first was the very real struggles I deal with, emotionally and physically, the things I can’t fix, factors completely out of my hands.  The second was myself, and very fixable in how I perceived, intercepted, and reacted.  It was so cliche, but the way she said it clicked for me.  Why was I creating an extra layer of struggle when I had enough to juggle on my plate?  Wasn’t it enough that fortune or people made life difficult, why was I piling on more for myself?  It was just extra, useless energy.


These were the reasons why I posted on IG and confessed publicly for the first time in my life what I was facing, the burdens that I kept buried for so long.  What was the point of keeping them secrets when this was fate and things were going to happen the way they were going to happen regardless?  In the grand scheme of things, did it really matter who knew and what they said and thought?  People will think what they want to think at the end of the day.  And when we reach this point, the end, there really is nothing much else to lose.  I’m surrendering it all by laying it all out before me.

I think more and more on what imprints I’ve left on this world.  What is it that I want to change, and how is it that I want to be remembered?

A vaguely terminal illness will bring this mentality to the forefront, especially when I’m feeling the real effects and symptoms on my body.  I broke down so hard last week that I felt like there was probably nothing left in me to go on.  I felt forgotten by the rest of the world, and wasn’t sure at this point it really mattered if anyone did reach out to me to tell me otherwise.  My mind spiraled so deep into a really dark future filled with more pain, repetitive suffering, a never-ending uphill battle, where no matter who else talked to me, I was the one who would have to go through it alone, the demise and suffocation, feeling the slow burn failings of my inner workings.  I didn’t want to go through it, I wanted to halt the brakes, but I couldn’t do anything about it.  I was tired of my mom coming in to help me with every single thing, I was tired of feeling like I was inhaling only 10% when I needed at least another 40% more oxygen through my airways.  I was so sick of my heart rate speeding up over 140 bpm if I so much as sneezed.  I guess I felt dead inside.

I called a friend, even though I felt so dead that the majority of me didn’t really want to see anyone or contact anyone.  If I passed on, people might be a tad sad for a bit, but at the end of the day, people would move on, and that would be all.  My friend miraculously cheered me up by staying optimistic and upbeat and keeping some part of me in the realistic loop of the rest of the world’s rhythm, about work, and driving home, and eating, and other mundane tasks.  We talked about stupid things, and the distraction definitely pumped a bit more energy back into me.  Things would be ok.  At least for now.  I would make it through, at least this time around.

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.

 

A Lookback of 2018

A Year in the Life of Jasmine

Today, my friend asked me what I thought of 2018.  It’s interesting, because all I was thinking of was that Christmas was coming soon, and I needed gifts for certain people, but I forgot that it also meant we were approaching 2019, and every year, I’m not ready for it.

I couldn’t really think of anything on the spot to answer her besides ramble about my job, so I looked at my calendar.  Here are some of the main points in summary:

  1.  I spent most of last winter at home to protect my body, and I put myself through hours of SQL and R coursework everyday; it was discipline, but I’m glad at this point now that I paid for that Datacamp subscription and made the most out of it.
  2. Went to Harry Potter World with my family, which was one of the biggest destinations on my bucket list, so I was really happy with this vacation.
  3. April was when I tentatively started applying to jobs to really dig down on what I could qualify for.
  4. I had still been sort of going to fellowship at the time.
  5. When the lung transplant team had me go to see an infectious disease doctor at UPenn and finally drummed down on my antibiotics, and I began my daily courses of medication.
  6. I went on those few dates and actually made a genuine attempt to enjoy myself since my last and only relationship ever.
  7. Checked out SOJO Spa, a lesser to-do item on my bucket list
  8. Interviewed end of May for my current position, and got it.
  9. Was still regularly going to gym/therapy 
  10. Got my first gynecology appointment out of the way, was hella scary
  11. Mom went to Dubai, parents went to Peru, and my mom celebrated her 60th birthday in Taiwan, plus New Zealand- it’s a good year for her
  12. A couple friends got engaged
  13. Went to Princeton UXPA lecture to hear Google UX/UI director speak
  14. Am picking up skills in Excel
  15. Moonchi and Logan are both one years old ^_^
  16. Unfortunately, Trump is still a POS, but it’s one year less we gotta put up with that

Hibernation Season…

I’m sleeping too late these days.  But I find that this hour is usually the time I am most collected in my thoughts.

I was flipping through Time magazine because my friend didn’t want hers anymore, and there were some great recommendations for podcasts, books, and movies that I jotted down.  I read “Baracoon:  The Story of the Last ‘Black Cargo'” in one night because it was so addictive and startling in the first person recounting of the last apparent black slave to cross the ocean into America.  In his life, an individual not beating him meant he was a “good person”.  That was his life.  And as if watching his entire village murdered or enslaved, and then suffering discrimination and cruelty at the hands of people in a strange foreign land wasn’t enough, all 6 of his children died before him.  Thankfully, one of his sons left him some grandchildren so he wasn’t absolutely left alone.

The next book I’m reading is “The Sympathizer” by Viet Thanh Nguyen, which won the Pulitzer Prize for Fiction.  Both of these books I’d heard awhile back, but just never got around to.


Four updates:

  • my favorite co-workers got shifted across the room at work, so I’m pretty much left alone now in my cubicle, and it definitely feels more lonely now.
  • this week at work, there are raffle tickets, 5 distributed to each employee. Assuming there are around 300-400 employees and about 12 really great prizes to win (worth around $50-300 each), I suppose I have a 3% chance of winning one of them, and I can raise that a percent or two by donating some canned goods and increasing it to ideally 6%, although that number isn’t true since some will also be donating, others not.  We also don’t know who submitted how many raffle tickets in each prize box.  I rarely ever win anything, so I’d be ecstatic if I won $100 or either of the computers worth around $200+ each.
  • on both a plus and a minus side, most of my Black Friday purchases didn’t work out- either not quite comfortable (winter boots), or just not the right size.  The hair straightener seems pretty ineffective too.   I will say though, that the portable powerbank chargers are incredible buys, and I will be saving money on that mini splurge I did.  I have my brother and dad’s Christmas gifts down, but I’m still wondering what to get my bestie and my mom…
  • I learned how to do VLOOKUP in Excel on my own today, and I felt so accomplished LOL.  It didn’t make sense when my co-worker was trying to explain it to me, but once you actually understand what the formula is and what each step is, it’s quite easy. It feels satisfying to learn a new thing.  All the frustration and struggling makes it that much more worth it when you finally comprehend how it functions.

Apocalyptic Winter Snowstorm… before Thanksgiving

Yeah… so forever remember November 15, 2018 as the most insane weather I’ve experienced.  The amount of snowfall wasn’t the most we ever had, however it was definitely one of the most unexpected and terrible drives I’d ever had to do.  I got out of work at 3pm, and didn’t arrive home until a bit past 8:30pm.  Granted, I camped out at a Starbucks for over an hour, but it was still crazy out there.  At first, I was patient and thought it would maybee take two hours, so I tried my best to whack the snow off my car windows although I didn’t do a great job with my umbrella.  I went to my usual gas station in Union to fill up before heading out on the roads, which was a very fortunate move that definitely helped avoid a bad situation turning into worse.  I tried to get more snow off my windows there, and on the local roads I couldn’t see the lines and couldn’t tell if it was one or two lanes.  My car slid around a few times which was terrifying, but again, all the cars inched along carefully.  Before I reached the gas station, I couldn’t see out of my rear window at all,  Once on 78, everyone was again, inching along, and I began to pass by a truck or car on the very side of the highway, diagonal as if it had spun out of control or just headed to the side with their emergency lights on.  I didn’t think too much of it, and kept going.  After about probably an hour, my GPS updated, telling me I could save half an hour if I exited from 36 instead of 33, or my usual 29 to get onto 287.  This update was a huge mistake, and I made an impromptu judgement call to trust Google Maps.

Allison called me while I was on 78, and we both complained about how slow it was and how bad the roads were.  At this point, my phone was still relatively charged, and it was plugged into the car charger, so I didn’t worry too much.  Once I exited 36, the real trouble began.  Stupid me didn’t listen to Allison, and decided to try to make it through Warren, but Warren is hilly, and at this point it began to rain too.  On the main roads, people were continuing to inch along, but then civilization slowly started to disappear as my car followed a few other cars into very local routes into woody neighborhoods.  As I was about to reach a turn there, I knew something was wrong.  A police car with two officers was stationed at the corner, and up ahead, as well as to the left where I wanted to turn, a few cars with their emergency lights blinking were scattered.  A truck included.  We all were stationed there for 10 minutes… 20 minutes… 30 minutes… at this point, I started to panic a little bit.  I was at the turn when an old man with a mustache, probably in his late 60s, came to my side and told me that both road options were uphill, so the cars couldn’t make it up.  The car ahead of me had managed to make it through with some pushes from him and another kind man, and he told me I could try after that car.  However, in the opposite lane where the car had escaped, a huge plow truck was approaching, and then I realized I was stuck in the way, unless I tried to squeeze into the right lane turn, so I did.  After the plow truck was eased through a few minutes later, the old man came to me again and told me I should probably turn around the way I came and try to escape that way, as this hill was icy too.  He helped push my car around, and I drove the way I came, slipping and sliding around, even at around 10 mph or less.  At this point, the panic was really beginning to become apparent that I might not find civilization or get out of the woods for hours.

As I tried to follow my GPS, I went against its directions a couple times as it kept trying to lead me up hills and darker neighborhoods.  But the next best hope I had going had a roads closed sign up, so I had no choice but to make the right turn before it.  I saw more stranded cars just stuck on the side of the roads, and another car that had apparently spiraled into the back of a truck.  Many accidents.  Another turn, and I was in another neighborhood, where a bunch of cars were struggling to make it up hill again.  I quickly made a left turn so I could turn back the way I came, but behind me, a plow truck showed up, and I was stuck behind it.  I realized my phone charger was not outpacing its usage, and I was at about 7%.  I called my dad, almost broke down, and quickly shared my location with him and asked him to help me find a route out that wasn’t uphill or closed.  I felt a sense of helplessness settling in, because I realized I could be stuck here forever where I had no idea where I was, with no phone or GPS to help me, and I would end up cold and lost and dying in this weather and situation.  Again saved by luck, as my phone was down to about 3%, I quickly searched for the nearest Starbucks, and luckily there was one 1.4 miles away, and the plow truck moved out of the way so I could leave.  I was relieved to pull into the Starbucks, where there was warmth, other humans, and some electricity.  At this time, it was around 6:30pm, and I was tired, anxious, thirsty, and desperate to charge my phone and pee.  Thankfully, I had a pretty speedy outlet charger with me, and I sat there and called my dad, and Meaghan talked to me as well, trying to help me figure out a path home.

I rested, bought a drink and asked for hot water, and sat back down where I saw about three other people also sitting around.  Meaghan told me the road that my parents and I had agreed on trying was closed further on, and so I would do best to avoid it and try Route 22 through a safer detour that wasn’t hilly.  I saw on the map that Route 22 was all in red, so that made me nervous too.  Thankfully, there was a chance I could take a route downhill, since it wasn’t uphill I could probably make it and it wasn’t closed off.  I saw a tall black lady walk in, asking the baristas for help and directions to Route 22, so I came up and told her what I knew, and we both chatted for a bit and it helped calm us down.  Soon, one of the Korean girls who had been there before me chatted with us too, and she said her car was a rearwheel and straight up was stranded in the snow; she tried to call a tow truck company but they said they wouldnt get there until 5-6 hours later.  Thankfully, a police car pushed her out the snow and told her to head to a Starbucks to wait it out.

I was worried about trying to head out, but I told myself I’d wait for my phone to charge to at least 70%, and then at about 7:50pm I wished the ladies luck and got into my car.  The roads looked a bit abandoned at this point, ground still frozen looking, my car still sliding around, at one point at another intersection, it wouldn’t let me brake and continued sliding right into the intersection through a stop sign as cars from the right were moving forward.  I really thought this might be the end, and we’d all be in a giant accident, but we were all moving carefully enough that the cars saw me and slowed down even more.  A few times, my car almost didn’t budge, which was also terrifying.

I finally got onto morning glory road, which was a pretty steep downhill on the mountain, but thankfully there weren’t many cars besides another stranded car, and once on Route 22, I felt much better.  The cars were moving slowly, but the first half of it the roads were pretty clear, and it wasn’t all jammed up like it suggested in red on the maps.  I got home a bit past 8:30 and Meaghan had called me about 5 minutes before I arrived home.

I was so stressed out and in shock, my body was tense, and today my dad told me to take off as the roads were still bad, and especially in our local area, it really looked like nobody had come to plow it.  After talking to Meaghan, I decided to listen to their suggestions and called my boss to take off.  I went back to sleep and woke up at 3pm, with a bunch of really terrible dreams that did not help calm me down.  Meanwhile, in California the wildfires have burned down an entire town and over 50 people are dead.  Is it just me, or the world feels like it’s apocalyptic all around?  Are the 7 signs of Jesus coming here?

Today, because I had to go out a few times last night in the cold, my lungs were wheezing a bit, and I’m not sure why I still live here.

Nov. 11, 2018 Sunday night: The Leaves are almost Gone

I’ve been joking about having a quarter life crisis since I was 20, but I guess 25 is the “official” quarter-life crisis legitimacy age, assuming 100 is the year we would live to on average.  I just Googled it, the average U.S. age lives to a lifespan of 79 years old, apparently a whole four years longer than it was about 30 years ago.

Weather and Season:

For some reason, it seems like fall condensed in the past week- the landscapes exploded into colors of orange, yellow, and red, soon swept to dead leaves in the wind, and finally left the trees in our yard 90% barren.  We went from 70 degrees two weeks ago to 40s this week, with bouts of rainfall scattered throughout the days.

Career: 

On Friday, it was not a fun day.  I was not feeling it, with the dark skies and rain, and I was tired from driving down to Princeton for a UX/UI lecture the night before (more on that later).  The new list I was working on was also more complex and annoying – there were more factors to consider and change in the system, and none of it was as efficient and straightforward as it should be.  I have a vague idea of the role I took on at this job, but I feel like more than anything, I was hired to research and figure out all the arbitrary conditions in this process without having been properly trained.  Someone from another department messaged me, asking me to look into something I had done two months ago to an account.  For comparison, I work through about 2000-3000 accounts per week on average, and when someone messages me on something, I get anxiety on having to understand and defend myself clearly and promptly.  I needed to understand more of the background and relationship of what other departments do and how the system functions, in order to be able to defend myself on what I had apparently done and what they were looking at.  My quick research led me to believe that I had made an error, and an email was immediately sent out informing others that I had made a mistake.  After help from my co-worker, I realized that I had not been wrong in the update I made, and I therefore attempted to explain to my boss why the change had been made.  It’s just a crappy feeling, not being sure if you did make the mistake stupidly, or it was some operational error you didn’t even have clarity on.  I had apologized many times so far, but out the handful times I had been messaged on my errors, I really believe most of them were due to some of the natural margin of errors that happen when you do a lot of manual work in large amounts of data, and also due to some result I was given that nobody had a concrete idea on how to handle.  There was only one time that it was 100% a huge stupid mistake I clearly made.  None of my bosses have yelled at me or anything, but it’s this pressure I feel where I want to work hard and I really dislike having anyone accuse me of mistakes.  I’m still having doubts about my value and my worth.  I’ve learned that it’s important not to apologize, and to always do your best to find out what happened before believing it when someone tells you you made an error.

  • The UX/UI event:  I had heard about this since the last meetup I attended back in the summer, and didn’t think much about it since.  But then I got an email notification and realized that the topic was one I was quite interested in, which includes user accessibility, something that involves improvement for disabled people as well.  The user experience should prioritize that demographic as well, so I definitely enjoyed the lecture, which was given by Elizabeth Churchill, the head of the UX/UI team at Google.  It was the first time I’d been in this building, which was the one right in front of the Princeton fountain.  The auditorium I was in looked similar to the one broadcasted at the UN, and I immediately sat next to a student who had a #builtbygirls sticker on her laptop.  I talked to her, and realized that there were obviously many Princeton students as well attending, and it was hard not to feel a bit intimidated since I was suddenly aware of the high amount of intellect in this room.  I enjoyed how the speaker broke down the way they researched things at Google, and I definitely agree that a smooth interface is all the difference in whether someone wants to download an app.
  • I’ve been researching more online about what courses and topics I could learn more about and be more exposed to.  I also have been reading up a lot on job requirements, particularly those in my town.  I feel more certain now on the skills I want to target acquiring at my current job, especially those that are transferable.  I need to remind myself when I feel anxious and insecure at my job, that it takes time to pick up on all the nuances of responsibilities, and that even if I lose this job, it’s not the end of the world, and I’m sure I am better off now than I was a year ago regardless.  I can only try my best.

Health:  I shuffled my Tuesday work schedule two hours later to stop by the SSI office with my dad to figure out what’s going on with the status of my benefits.  It always gives me anxiety to go, because one time we had this really mean Indian lady who treated me like a criminal who was taking advantage and lying to her.  I put aside two hours for the trip, but thankfully, we talked to one of the front desk ladies and resolved our questions in about 20ish minutes, with probably a 20 minute wait.  I left with a pamphlet of information and more clear instructions on how to report my wages, and then realized I could head into work at 11am instead of 12pm.  I also ended up going to a deli to talk more with a new guy at work, he’s an interesting character.  I also have to figure out some insurance claims I made, and sometimes when I think too hard into things it can be overwhelming. But I’m okay for now.

The good thing is I’ve done so much research, and have a list of notes on what to further look into and learn about now.  At least I have a sense of direction on what to gain more experience on.  Bloomberg Business magazine is also really informative on world news and trends, so most of my weekend was spent between watching The Americans and reading and researching.

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?

STRESS: Blegh -not-feeling-grateful Days

I want to write a wise journal entry today about how I’m thankful that I have a roof over my head, food to eat always, and my family, friends, and still some independent ability, but all I feel is negativity.  Not depression at its worst as I’ve felt before, but on a scale of happiness, it definitely drooped more.  Especially considering it’s summer and should be the highlight period of my year.

Let me jolt down some actual and pessimistic thoughts and conditions lately:

  • I felt very frustrated and angry that someone at work falsely accused me of abusing my grandmas handicap placard to HR. First off, one grandma is deceased and the other is halfway across the world.  I felt very wronged and misjudged, and not even able to confront the situation as I don’t know who reported me.  I felt angry that with all the shit I’m dealing with, I have to justify my legal use of trying to help myself out and make life just a tad easier.  I also would rather not be short of breath and constantly exhausted that I have to take a poorly paid part time job. This incident has made all my other issues affected by my illness amplified, and I am aware that I am in a poor attitude mode these days and have been very short tempered with my mom, and barely tolerating incompetent or creepy people at work. Guilt- the definition of feeling and hearing someone’s elses feelings and thoughts louder than your own, and them fighting in your brain.
  • Leading to my next point, I also would rather not have to go to Upenn every single month and do a bunch of unpleasant tests like bloodwork, cat scans, following up and scheduling with doctors, going to a psychiatrist, therapist, taking 10 diff kinds of meds each day, and also having other symptoms exacerbated by my weak body.  Trust me, I want to appreciate my body that I have one at all and appreciate any functions it does have, but right now, I just want to complain about all the bullshit I deal with.
  • Relationships and Weddings:
    • Everyone around me is in or getting into a relationship, and it feels like their lives are all planning or moving on towards the next step:  moving in, getting engaged, getting married.  I want to feel confident in my singleness, but I don’t.  It’s kind of gotten to me and made me feel left behind even more so in all the other ways I feel left behind, and I wonder if it’s me or just the circumstances that I happen to not be in a relationship.  I went to a bbq this past weekend and literally there was only couples there, besides me and my bestie.  Possibly 3 other single people, out of 30-40 people.  Also, my friend is planning her birthday, and my entire friend group asked if they could bring their significant others.
    • Making the “left behind” feeling worse, I realize that while I am grateful to be a part of anyone’s lives at all, I also feel shitty that some friends I thought I was at least decently close with in college haven’t invited me to their wedding- I was told not to take it personally, but it just reminded me of all the times growing up and in high school where I struggled to find solid friends, and how I was always the one on the fence that people thought of maybee inviting to their parties and events.
    • On the other hand, it made me worry even MORE that if I were to be chosen to be part of someone’s bridesmaid or maid of honor, would I even be up to the task?  I may be too busy taking care of my health to even make it to their wedding or event, and that makes me unreliable (my health, but aka me).  It’s not fair, and I really want to do those things for one of my friends.  And my best friend isn’t even planning on dating or getting married, so I don’t even get to 100% be someone’s maid of honor -_-
    • I’m thinking, am I going to literally live with my parents and depend on them forever?  For awhile it felt like that was an okay situation, but then my mom would say little things here and there that would add up, and make me feel a little nuts and wish there was some space between us where I could have more independent choices, and not constantly have to put up with another opinion on my clothes, etc.
    • I had a major headache at the bbq this past weekend, and so I didn’t enjoy myself or socialize much with anyone at all.  It was all I could do to be present at the bbq at all.  I was so tired and just wanted to be out of the house and have a break from my house and parents.  I went to Upenn today, and had a fever of 99.8, and even though my cat scan shows that the cavity walls around my hole in my left lung is thinner aka less inflammation, the lungs have slowly but surely been progressively deteriorating.  So it’s like I’m falling down a giant decline on a mountain and this news was just a slight rock hop before continuing screaming and falling down the decline.
    • I want to break down and cry, and I feel all this pressure and tension inside my head and my neck and shoulders, but it’s not coming out.  It’s stuck.  I had an upset stomach and also my nose started bleeding again, and although it’s a bit dramatic I feel like my body is falling apart all over the place.  I literally just fixed my yeast infection and eye dryness.  There isn’t even anyone that I can target all my pain and anger at, that I can just direct a giant “FUCK YOU’ to.  It’s just luck, fate, whatever.
    • Trying to be mindful of human nature and not getting too greedy with what I want.  Two months ago, my main goal and source of happiness would be to just get hired for a job, any job.  Now I’m tired of it and finding the work very uninspiring and feeling like I’m undervalued and just doing bullshit repetitive work.  I suppose this is normal, and at least a “normal” problem to be stressed about.  But then I think about what could’ve been, how far my potential could be, and how I will probably never know because I am constantly being limited by my body.