Giving and Receiving Gifts

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

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

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

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

Daniel Wellington watch (broken by my dog though)

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

Nintendo Switch 

MacAir 

Samsung Galaxy S7 phone

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

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

S’well / Hydroflask water bottles 

Helly Hansen base layer jogging shirt 

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

Soma Intimate bras 

Nordstrom tops/dresses 

Taiwan glasses

RavPower phone chargers

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

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

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

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

 

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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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The greater process requires equal parts to yield optimal results.

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

 

 

Ending 2018 with Hospitalization

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

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

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

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

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

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

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

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

 

Adulting

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

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

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


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

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

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

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

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

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

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

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

Anyway, that’s all for now.

Insecurities

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

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

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

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

Life in the 20s

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

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

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

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

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

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

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.

Reminder to be Thankful: Healthcare, Career, and Other Basic Things Most ppl take for Granted

I’ve started my second week of work, and I remember thinking of my last job and how excited I was just to have a job and be healthy enough to go to work everyday.  After a couple months though, the excitement wore off and the work became mundane- I felt restless and uninspired, not to mention the weather got colder and more difficult for me.

I had this thought at the end of last week that it seemed I was nearing the end of my training and picking up most of what I could pick up at this job and place, but I really hoped that wasn’t the case.  Thankfully, I think I still have a lot to learn, and if I do well and still last here 3-6 months later, maybe I’ll get a raise or they’ll consider moving me to another higher position in data.  Ideally, my image of “making it” career-wise would be to climb up the ladder in terms of data analyst, then data scientist, of which the avg annual income is ~$100,000.  Even though money isn’t everything, it would definitely be one less thing to worry about and would make life a little easier.  My hospital stay for just 8 days last year ended up costing ~$50,000… I don’t know how people are supposed to survive and pay that without insurance in America.  Definitely a huge problem.  It’s inhumane not to provide people with the basic ability of maintaining their health and welfare.

I’m glad that compared to certain peak times of my life, these past months I haven’t had to visit doctors an incredible amount- I have to take off once a month so far, and I try really hard to book my appointments for other things after my work ends, which is possible because it’s part-time.  As I grow older, I become more and more aware of spending money practically, and investing in things I need. Really need.  Like work clothes.  What I WANT are a nice new pair of bose headphones and for my mac computer to have sound again, but so far, I am living life fine without either.  Shout out to you Sean if you’re reading this lmao because I use bluetooth on the sleep machine to get sound when I connect it to the laptop 😀

So what I want to be thankful for now, and what I have to keep reminding myself when I start to feel bored or annoyed that I have to go to work, is that it is a blessing to have the ability to have a job and to make it there everyday.  I remember those cold winter months where I had really bad winter blues and was alone and so frustrated that I was just full-time sick, watching everyone else simply have opportunities to hit their goals.  I don’t need anyone to hand anything to me, I just want the opportunity to earn it.  Because now that I am not down with the flu/cold or my lungs are fucking with me and I can manage my current job so far, I feel confident that I have the drive and the ability to learn and make it to where I want to be.  As long as life doesn’t throw more shit at me (which I know it will), I can do it.  And that is one of the biggest leg ups I have over my competition.  I know what it’s like to simply not be able to try.  When you’ve never known what it’s like to have a chance feel like it’s completely robbed from you, you don’t know anything else except to take it for granted.

I know I’m not earning that much right now.  But it’s a step above not having the ability to earn anything at all.  And even if I get fired now, I already picked up so much on the corporate world in one week, and other random technical jumbo I never thought twice about that impact our lives very much, that it’s okay:  I know it wasn’t a waste of time.  Absorbing knowledge is great 😀  I’m starting to migrate towards analyzing real work this week in their many Excel sheets… my biggest wish is that the learning doesn’t stop here and I’m not stuck doing this for weeks on end, or for the rest of my position there.  Give me a chance to prove what I can bring when illness doesn’t prevent me, and I will kick ass.