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
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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.

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.

 

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.

Food for Thought (Literally)

Throughout the years, I’ve been exposed to a lot of things I’ve grown to care about and follow closely.  I used to live in my own bubble, and my life mostly consisted of my parents, my piano, my books, and the internet, most of which I used to casually stalk other people on facebook, and watch korean dramas.  During my high school years was when I started to pay attention to movies and film music and start a notebook.  But it wasn’t until college that I ventured out of my bubble,  became friends with gay people, started reading up on news and politics, and discovered through experience how wrong it was to assume people thought, felt, or processed things the same way I did.  I made friends, drifted apart from friends, and learned how it was normal for shitty things to happen, but that it was still important regardless to retain my empathy and sensitivity in a healthy amount. I’m proud that I’ve decreased my level of ignorance, even though I’m sure there are still tons of things out there I’m not aware of.

And now it’s come to the chapter of post-graduation life.  In the three years since college, I’ve continued to grow by becoming more aware of myself as a person as well as building on my understanding of different issues globally.

  1.  I’ve struggled with my one-foot-in-one-foot-out stance on Christianity
  2.  One of my passions have become following the representation of Asian-Americans across the spectrum of different things, particularly media (shout-out to BTS and Awkwafina in particular this week!)
  3. I’m really disappointed in the Kavanaugh-Ford result this week, and find it harder to have faith in our government in general.  I also need to read up on what the current election situation is.
  4.  I’m now a partial-vegetarian:  I’ve been such for about 2-3 months now. I consciously avoid beef/cow and pig/pork now.  I don’t buy it, and if there were other food options I would choose the alternate food option.  The only time I still eat it is if for example, my mom made pork soup and it’s already been prepared, or if I’m at a friend’s house and it’s rude to refuse.  The reason being, from a moral perspective I’m not sure I could kill a cow or pig unless I had no choice, especially being aware that a pig is smarter than a dog, and dogs are so wonderful and intuitive.  I think I’d be okay killing a chicken or seafood though, so I still eat those.  I also understand why people consume meat, but the food should be treated with respect.  My mom used to lecture me on starving kids in Africa and never to waste food.  It gave me a lot of pressure especially since I had eating problems as a kid, but as an adult, I fully understand what she was getting at.  From my perspective, eat it if you want, but don’t just eat a bite and throw it away nonchalantly.  This is particularly for meat, because an animal did have to be sacrificed for you to fill your stomach.  And because the meat industry is so industrialized, we don’t think about this when we purchase a slab of steak at the supermarket.  That’s really upsetting to me.
  5. Related, but Americans in particular are so wasteful, and our environment is in danger.  We’re all conscious now about global warming and entire ecosystems being tainted with pollution, and polar bears drowning or starving because of us.  I know the problems are so convoluted and big that I can’t change things alone, but I’d like to rid myself of the guilt of adding to the problems.  So some changes I’ve made are to always use my refillable water bottle, and I haven’t touched a plastic bottle in the past 3 months or so.  I’ve been nagging my parents to do the same, which is ironic since my mom used to be the one to nag us.  It’s really easy to grab a plastic water bottle on the go, but in my opinion, those are there for exceptions, such as emergencies, or for a guest in need.  You don’t need a plastic bottle to use at home.  I also have been trying to put leftovers in containers so we use less plastic wrap.  We have a semi-compost situation where we throw our rotted vegetables and egg shells in a separate bin.  My next step is to buy a refillable bubble tea container, or at least a silicone or glass straw.
  6. I need to organize my clothes and Marie Kondo the old clothes that do nothing for me.
  7. Some mistakes have happened at work this past week, but not even knowing if those mistakes came from me or something else made me realize I needed to have a talk with my boss about receiving additional training.  I needed to understand from a holistic perspective about the company, and he wholeheartedly agreed and supported my thoughts.  My co-workers encouraged me to stand up for myself and have that discussion, so I feel grateful and proud of myself for again, venturing out of my comfort zone.

I guess life consists a lot about making choices that you’re comfortable with.  I can’t keep focusing on upsetting thoughts like where my potential life could be at if I wasn’t held back by my illness.  Even though there are an infinite amount of things happening around me that are terrible, I feel a bit better in the knowledge that I am trying my best to do my part to make a difference, even if it’s just a tiny bit.  At least I can live with myself, knowing I have no regrets, that I don’t have guilt in my hypocrisy, and that I continue to push through, admit to my mistakes and grow.  That’s what’s most important to me these days.

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.

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.

Mundane Update on Terminal Illness and Such

It’s summer, and it’s usually where I’m doing relatively well, as well as I could be doing for my condition anyway  (COPD).  I have a part-time job that is manageable, and it’s as normal to normal as it can be – I have a set schedule of waking up around 8:20am everyday and coming home by 4pm to rest, eat dinner, prep, rest, repeat.  Even the pill popping at night has become a pretty standard routine that doesn’t bother me much. I stay busy physically and mentally, but then comes the visits to Upenn every month or so for fv1 testing, and sometimes it’s okay, some other days it’s less okay.  The past week, I’d been trying to obtain a note from my lung transplant team verifying the medical needs of staying with the same psychotherapist who treats me with anxiety and follows me on my chronic illness journey; we hope to get a single case agreement with the new insurance company.

Sometimes I get a bit of a panic wondering what it would be like with me surviving an illness that limits me in so many ways, financially, physically, etc. The only thing I can control is my emotions and mentality, so that’s what I’ve been trained to focus on.  What if my parents weren’t there for me to depend on?  Nobody else would care.  My nurse practitioner wrote me a medical note that I could give to the insurance company, and in it it describes me as a very young patient with severe lung disease and one with a “terminal illness.”  It was so weird to read that part.  She had warned me she would use some scary words to make her point across.  But what freaked me out later was the realization that she wouldn’t use it to straight up lie– it was at least true and relevant to me even if I felt like I was managing my day-to-days okay.  I am someone they all are monitoring to see when, not if, my progression starts to decline.  But again, I can’t focus on these thoughts because they don’t contribute positively in any shape or form.

For me to be questioned at work when I park in the handicap spot by a co-worker, these things feel so ridiculously unfair.  Yes, I don’t look sick enough.  But yes, in fact, I do not have a mild disease, but a severe one.  I am just young and able to fool people in the short term run.

To end on a good note though, this woman I’d been following who is just a bit older than me with cystic fibrosis (fighting2breathe) was severely ill, on the hospital bed for months in California.  And she received her second lung transplant and looks like she is on the way to recovering.  I am so happy and relieved, and hope that for all her suffering and strength, she is able to have the life she wants, with her husband and future kids like she hopes to have.  That’s her biggest wish, and yet most people around me take those for granted.

I don’t pray to be successful or have anything given to me:  I want the opportunities to be able to become successful on my terms, and the drive and determination to get there regardless.