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.

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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.

Summer plans – Productivity

So I always feel like I’m not doing enough.  For myself, for other people.  It’s a lot of pressure.  I’m consciously making an effort to think of all the things that I AM doing though, and there are a lot of things actually that I’ve worked towards and improved on despite all the other regular shit going on.

  1.  Crisis Textline Volunteer – in the process of being trained.  I already agree with a lot of the things I’m being taught in the guidelines and videos, so that’s a good sign.  I worry that I won’t be able to handle it emotionally and will feel like a failure. But I still think it’s a good challenge to try.   Text HOME to 741741 if you’re looking for support.
  2.  Starting a new job as a Data Entry Specialist this upcoming week- again, feeling like I might be a failure if I can’t hold onto this job or feel sick and end up quitting/getting let go.  But that’s another thing I’m working towards for summer plans, and I hope I at least learn something.
  3. Dating – Yeah, I had an anxiety attack last night thinking that I’ll never find somebody, but I did go on a few dates and it’s probably hit the end of the road in that department for now, but whatever I tried lol yay me.
  4. Seeing friends – I’ve definitely made a huge effort to stay present and updated in my friends’ lives, and I am pretty content with my social life at the moment, which is a rare thing.
  5. Body – I’ve hit my weight goals and also hit the gym 9 times the past month, which was my original goal all year long and I wasn’t able to hit that goal until recently.  I do see mild tricep/bicep lines, but legs and butt still feel like sticks.  Regardless, I’ve also taken up Sunday yoga again and I’m happy I forced myself to do that because it does help more or less.  My parents also go on evening walks and my dad goes on a few runs each week, so I’m also proud of them!

Making Lemonade out of Lemon

Hella cliche I know.  But I was thinking about how the past UPenn hospital visits have only become increasingly difficult, with more doctors from different departments added on each time.  It definitely took off in the “worse” direction around the time I decided to do the lung transplant evaluation.  I was rambling to my friend about making lemonade out of lemon, even if it’s kinda shitty, just to make it edible enough is good enough for me.

I used to be someone who just kind of enjoyed bubble tea.  But now bubble tea has taken on a whole new level of meaning for me.  It’s the reward I looked forward to after my rough appointments and tests.  It’s forever going to be ingrained as a positive memory I will cherish, grabbing Mr. Wish with my dad or my parents, a ritual you could even say.

So with all the rough memories that are occurring in my life, I am still trying my best to balance it out with each visit ending in lemonade, even if sometimes it’s only barely edible.

Create your own silver lining?  It’s damn hard but I’m trying anyway.


On a slightly separate note, I think I’ve finally reached that point where needles don’t completely send me into a near anxiety attack.  It’s my 20th or something blood test/needle in the last year, and now I kinda just stare at the needle in disdain.  Still a bit nervous, but not nervewracking.  You just don’t know how strong you are until you’re forced to challenge yourself consistently.

Dating with a Chronic Illness

My mom has talked to me about what it’s like to live in another country where English is its primary language but not yours.  There are a lot of struggles that I can only imagine, as I am privileged to grow up understanding two different languages and two different cultures.  There are times where they clash, but it was overall still much easier to absorb for me than for her.  There comes the theme of caring less what other people think, and doing what’s best for yourself.  Even though the situations vary for all of us, the feelings are very similar.  Anxiety or worry about how others perceive us, how they judge us.

It frustrated me that it was frustrating for her, and that she could not seem to overcome those feelings.  More relevant, to become more self accepting of myself so that I have the courage to reach for things I want out of life. Particularly with the process of dating and fearing the reception and outcome.  It is really difficult.  But I really have to work on becoming okay with who I am, chronic illness included.  It doesn’t define me, but it definitely affects me in so many ways.

 

Losing My Rhythm

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

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

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

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

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

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

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

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

Prayers for Motivation

I remember growing up, when I blew out my candles I always prayed to be healthy.

Now that I’m older, I try to aim for more realistic prayers… I know there is a high chance I won’t ever get to experience what it’s like to be healthy or “normal”, but I pray instead for the motivation to want to push myself to want to be the best version of myself I can be.  The courage to actually strive towards working my hardest even when I know my ideal version might not ever become a reality.

I feel like my prayers have somewhat been answered lately?  I am far  from who I want to be, yet I actually wake up feeling… motivated.  I’ve been working hard not just to write up what my goals are, but doing them.  Diving headfirst into the world of data science, and going when I am able to the gym, despite knowing it’s going to be a long journey and I will always feel out of breath and never quite “there”.  This is already an improved version of the mentality I used to have, drowning in depression and fighting simply to get through Step 1 of: wake up and feel motivated.

Any haters in the world whose judgment and attitude towards me used to cut me like a knife… turn it into noise

Thoughts on Morality (Shower Post #4)

I think it’s a fair thing to say that the more we get older, the more jaded we get- we have less patience, we have less faith in others, we become more cynical or realistic, depending on your perspective.  I think for me, I have definitely become more cynical/realistic with age.  Whenever I go through something difficult, I think, why does no one know or feel my suffering?  Why does it feel like I am even more isolated and alone?  Instead of having faith in others, we fear reaching out because we don’t trust that anyone actually cares, or sincerely cares.  I think this is the logical path that people follow that can lead them to such a dark place, to the point of even suicide.  At this point, it seems like your life doesn’t count anyway, and it won’t matter.

For me, I get frustrated because in chronic illness, the suffering doesn’t end.  It’s not like a cold or a break up where your circumstances may improve eventually; they don’t.  You do.  Your mind sinks or swims.  And then I hide my fears because I’ve had it proven countless times to me that in the end, it seems I am the only one who can fully do anything about what I am going through.  Besides my dad and sometimes my mom and a few close friends, I am pretty much alone.  Almost no one else is there beside you every second living your life, observing it, experiencing, as much as you, having that strength of endurance.  People will enter and leave your life, maybe be a blessing even for the short run, but they can always fade at any given time.

We are all so scared of showing vulnerability, of laying out our cards and letting everyone else judge us, embrace us, or reject us.  Especially when we go on social media like Facebook and Instagram, and we are flooded by images of hot, fit bodies, attractive portraits of people laughing, having the time of their lives with their significant other on their vacation, surrounded by friends, or eating delicious food.  It is true that the positives and highlights are part of our lives, but they are only a small snapshot of the entire rhetoric.  Our whole society encourages us to hide our insecurities and to only portray our best selves, but it isn’t always the whole picture, the whole truth.

I do the same.  I only put up pics of my happiest moments of when I look good on Instagram.  It does make me feel better to take pride and look at these images and tell myself “Wow, my life is not bad!”  It does make me feel more or less validated when I get many likes.  But I also wish to be brave enough to allow myself to receive likes on my ugliest, saddest, most depressing snapshot of my life- even more so, I want to be brave enough to be okay with no likes if that’s what happens.  I may be afraid of judgment, or of dragging down other people’s happiness- but so what?  We gotta inject some sincerity and realism in what’s really going on in our lives, to show others our scars so that they can be more accepting and forgiving of theirs.

People don’t see me through the moments where doctors discuss my life span and ask deep cutting questions like “Have you ever had suicidal thoughts” and me, reluctantly admitting “yes.”  People don’t see me when I wake up in the morning and count the amount of meds I daily pop into my mouth or inhale.  People don’t see me when I am at home, physically and mentally too tired to complete simple tasks like laundry.  I fight everyday to live a fraction of energy and memories that others take for granted.

Maybe part of this is my fault, for not being more open, and for withholding part of the truth, I actually get more judged than not, because people see a “normal” young woman abusing a handicap sign, people see my beaming grins on my Insta, and people see me when I am trying my absolute best to participate happily in life.

I guess for me, faced with the morality of my being, and always reminded of how small of a drop of water I am in the ocean, I keep questioning, how do I make my life count?  It is not going to last forever, but that is out of my hands.

What I wish, is for people to think more on this question, on how they impact others, and to be part of a greater plan for us all to have faith that if we fall, the ones around us care enough to catch us, as cheesy as that metaphor is.  To come to terms with our true selves and the imperfection we are- taking pride in our strengths, accepting our flaws and vowing to work on improving them.  So that we give encouragement and faith to others, and in turn can let ourselves fall in faith.  Knowing that we are trying our best, even if that’s not what it looks like, even when others tell us we are crying wolf and victimizing ourselves, them telling us we’re fine, but us knowing for ourselves that we are not okay, and knowing that continuing to do our best is okay, it is enough.

Disney + Worries

So… my family is planning a trip to Harry Potter World and Disney and I’m simultaneously excited yet super anxious.

The biggest hurdle is that my therapist suggested that I start using a wheelchair of some sort so that I can avoid becoming exhausted to the point of major discomfort and fatigue, and tense muscles.  I had never considered using a wheelchair before, and the hypocrisy that is me, is that when I see other people in wheelchairs, I don’t think much of it, yet when I think of ME in it, I am riddled with a million feelings: perhaps

Shame, that I have to submit to a wheelchair and can’t make it on my own two legs,

Guilt, that I don’t really deserve to use a wheelchair and am a “fake” illness person (doesn’t help that tons of other people have doubted my illness over the years), and that my family will have an extra task to do in pushing me around,

Embarrassment when I have another extra thing to make me feel different, and perhaps

Relief and Hope too, that this might be much better of an arrangement for me energy-wise, if I could only wrap my head around accepting it.  The truth is, my whole life I’d lived in the mindset that my lungs were going to eventually heal and become “normal” when I reached adulthood aka college, yet I was slammed with the ugly reality when I switched over to an adult doctor, who told me I should be prepared for lung transplant evaluation instead.

My whole life, I’d been competing with people functioning at full capacity, when it was literally not possible.  And even after the sad realization, I could not bear to face the reality that it was, and continued to live in doubt and silence.

After a few years of therapy now, which I started on and off 3 years ago, I think I’m becoming better at shifting my perspective to a more positive one, but it’s still a really long and bumpy road.  I have to expect that most healthy people, especially ones at my age, will simply not get it, or even have the patience to try to get it, because they have their ableist privilege, and all I can do is control my own mentality.

The list could go on forever for all the rough moments in my life when other misguided people mistreated me and misunderstood me, believing I was taking advantage, or lying, “playing a victim”, or one thing or another, just because there was no visible evidence in their eyes.  And it caused me to continue to doubt my own capabilities and limits as well for a long time.  But now I realize that you do not let other people’s ignorance hurt your own knowledge and perseverance. You are not any less just because you were given less spoons.

I have to learn to forgive people and move on, because for a long time honestly, I’ve let myself get caught up in the unfairness of it all, and the rudeness of others causing me so much hurt and pain.  No more.

Acceptance in Mind, Heart, and Soul

I often find it difficult to understand how people have that kind of faith in God or a bigger picture.  I want to make sure I try to obtain that kind of peaceful acceptance in my heart, without stopping to fight for the way I want to live, my right to be who I want to be and who I am, and becoming complacent by giving it up to fate or that it’s “out of my hands” and “God’s will.”

I think the people in this world who are angry, hurt, and who struggle with depression and anxiety, see all the misery that is the world’s suffering, and we feel it more deeply, to a point where it is near unbearable levels.  That’s some of us fall prey to alcohol and drugs, anything at all to numb the pain, even if it ends in self destruction.

This week, I’ve started my four-day lung transplant evaluation tests at UPenn.  I’m 24 years old, and I’m somehow simultaneously used to but also feeling misplaced standing in the waiting room with the other 60+ year olds.  I was wheeled in a wheelchair for a 6 min walk test, and one of the technicians said to me, “You’re too young to be here.”  I just laugh it off and say it’s okay, I’m basically an old person.

I don’t fit in with peers in my age group.  I don’t know how to at least pretend I fit in, and chuckle lightheartedly at moments in life like just silly things with friends.  I might as well be socially the same as a hermit in the mountains, with a long beard in a dark stone cave.  I have to relearn it each time I try to really interact with civilization again.  I’m awkward.  No denying it haha.

Instead of wallowing and focusing on how pitiful I am in everything I’m going through/about to go through, I’m trying to focus on the positive: my inner strength, the inner strength of every journey and experience that’s made me who I am today.  My Asian heritage, I am an example of what immigrants go through, what it’s like to grow up and live in America.  My struggles and experiences as a woman, my eyes have opened up to the inequality and the things that are really not okay.   From how guys sometimes treat me, from the subtle to the obvious.  Being manipulated, getting hit on sexually, or finding out that a guy hooked up with your friend while pretending to go after you while you were ill.  All of that shit.  All of it.  #metoo.  I feel the weight of it all right now.  But I’m still standing here, because I’m empowered by the strength of the people around me.  We’re in this together, we’re fighters, and that’s what life is about too.

I have to find the strength to endure it all, and keep trying anyway, despite constant setbacks and constant misunderstandings and judgment by people who are blinded by their privilege.  I need to overcome my own judgment of me.  And I want them to want to be better versions of themselves, because I see the potential.  If I didn’t, I would have given up on myself a long time ago.