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.

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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!

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?

Attempting to Make a Korean Dinner Pt. 5

I followed this recipe to make buldak, aka fire chicken!  It’s a popular dish that I’ve seen on Youtube mukbangs and also on some select menus at korean restaurants.  It’s always piqued my interest, and I wondered what it tasted like, especially with a combination of mozzarella cheese on top. Turns out, it tastes amazing.  I followed Maangchi’s recipe here:

https://www.maangchi.com/recipe/buldak

28208336_10156246513673960_898021416_oFirst of all, the sauce that Maangchi gives is DELICIOUS:  sweet, tangy, spicy.  Also very simple to whip up, although very messy particularly with the vivid bright red color. It also took a long time to control the cooking and baking of the chicken, especially since I had to use what was in my fridge, which was chicken drumsticks instead of 1-inch breast.  I’d say I spent total around 50 minutes in the pan and also in the mini oven.  I also added a bit more water to let it simmer longer, but it could have used a bit more time actually.

In addition, I found mini rice cakes and went ahead and boiled that and threw it in there on top after rinsing in cold water.  Lastly, topped it all off with a generous heap of mozzarella cheese to toast and melt.  The combo is very interesting and surprisingly delicious!   I’d def crave this dish again!  There’s a few more drumsticks marinating in the fridge as I just couldn’t fit anymore into the pan.  This yields 8 drumsticks, and we ate it over plain white rice.  My family enjoyed it very much!  Maangchi is great.

Tomorrow, Korean green onion and seafood pancake time.  My mom also wants me to make Japchae again.  I may also attempt to make korean fried chicken, and red bean buns too next week since my mom loves those.  We’ll see.


P.S.  I was disappointed because my friends are all out in NYC and Jersey City celebrating their birthday, and I couldn’t join, partially because it’s too much walking and cold, and it’s also snowing.  But, as I’ve had to learn many times over, you gotta try to make the best of what you have through your disappointment and try to still do what you can.  It still turned out not a bad Saturday, and I still feel like I can go to bed having accomplished something productive and new.

Wizarding World of Harry Potter -Feb. 6, 2018 Log (Pt. 2 Tuesday)

I have to say, this is probably the second best vacation I’ve ever been on:  I had the best solid sleep I’ve had in about two years last night, and everything is going well.  I had proper rest, we live in a great hotel, the weather is perfect, and we got to see the second half of Harry Potter Diagon Alley in Universal Studios today – I think I can add today as the fourth happiest memory I’ve had, with the first being in Taiwan with study abroad friends, the second being throwing a surprise party with kids for my co-counselor, and the third being sitting on a gondola in Venice.

I guess part of what makes it so happy too is going through what feels like hopeless hell, everything going wrong.  Today, everything went smoothly and right, which is rare.  No regretful feelings, we got to do pretty much everything.  I had a solid 9 hours of sleep, we woke up at 8am to get to the park, and rode every ride and saw every inch of Harry Potter World (besides the Hogwarts train but it’s seriously ok cause the rest of it was that awesome), I got Florean Fortescue’s strawberry-peanut butter ice cream, got my Gryffindor quidditch shirt in kid’s size, got my Hogwarts keychain that I regretted not buying the first day, my mom got her turkey legs, we saw the Mardi Gras parade AND managed to squeeze in E.T. in the last two minutes of the day.  We took a few pictures at the exit and I felt confident to take a photo in my wheelchair.  Yes, my wheelchair.

I dreaded this wheelchair forever, and the first day I rode it I had moments where I felt like my life was falling apart and I was becoming an even more useless, dependent person.  I brought not much joy due to my depression to others, I was physically weak and easily fatigued, I did not even bring much income in, I felt like I could barely help myself:  I felt worthless.  And truth is, I will probably feel frustrated by all the limitations again many, many times over, but I realize that accepting the help of using a wheelchair made my quality of life 10x better. I was no longer so fatigued and uncomfortable that I could not properly enjoy whatever we were doing, and as the second day, I got used to stares more and even stared back happily.  I guess it’s still different since I don’t know anyone personally here, so I feel somewhat less self-conscious.  Props to my parents for wheeling me around all day, I am amazed at how fast regular people walk without tiring!  The speed they go at is like a mild superhero speed compared to my own.  It saved us a lot of time too not to have to rest every other minute.

I have to say, to date I highly enjoyed both Harry Potter rides, I also enjoyed the Jimmy Fallon ride, Transformers, and the Incredible Hulk were the highlights.  The amount of blessed feelings and happiness I experienced in 4 days so far seems to make up for how shitty I’ve felt the rest of the past year.  To simply be able to accomplish more than I can brings me great elation and then I feel very satisfied and full.  I’d rather have one great vacation than 2 shitty ones where I feel sick the whole time.  Wheeee.  ^_^

Here’s to hoping the last day is a solid one as well.  I can probably live off this good vibes week for quite awhile, maybe it’ll last me till spring?  Fingers crossed.

 

Wizarding World of Harry Potter -Feb. 2-3, 2018 Log

So… just to put down a few quick notes about my trip thus far:

I’ve been working on being less self-conscious, and realizing that in doing so is accepting all of me, even the “bad” parts that I instinctively try to hide.  It may not seem like a big deal, but it is to me.

  1.  The first step, was when I pretty much wore my filter mask the entire day… traveling at the airport, airplane, etc. I wore the mask.  It made me feel different even though I knew the mask was cuter than the surgical ones I used to wear.

Cons:

-felt like some ppl stared and tried to be chill about it

-got tiny bit humid after forever and kind of a hassle on my ears

-caught myself in the mirror and did not feel pretty

Pros:

-got kinda used to it after the 2nd hour

-was more breathable than surgical masks

-whenever a person coughed or sneezed close to me, I was no longer super paranoid that I would get sick soon after

2)  Wheelchair all day today:

Cons:

=stuck out very much and was pretty self-conscious, especially at moments when I got up and a couple ppl stared esp since I had no broken legs to show for using a wheelchair

-got no perks at the theme park since you can now pay extra for express lane

-had no freedom for movement since I was pretty much pushed by family all the time (dependent)

-became very aware of anything like a rope or steps that would be super flexible and easy for a walking human (inconvenient)

-did not like feeling so much shorter than everyone else

Pros:

-was kind of nice to be “pampered” almost by my family, who willingly pushed me around taking turns

-was much more attentive personally to other wheelchair-users

-no longer had headaches or felt like passing out, esp on the rides that were more extreme

-no longer felt past the point of dead after a few min of walking; however, felt that point approaching at the very end of the day (ah! lasted till the end :D)

-speed was much faster to reach all the attraction spots since we were now walking at the avg human pace, not mine

3)  Oxygen:

Used oxygen during the plane ride when I went to the bathroom, and my oxygen level dropped to an 85, but then went up to a 91 after a few seconds.??  After oxygen use it went up to a 97.  Walking from car to the hotel room my heart bpm was 158, and oxygen dropped to a 90, but standing still goes up to a 93 after a few seconds as well.

Other Cons:

-I still had a few moments where I felt like I might break down because my mind started to wonder to the fact that I was so dependent that I would not be able to experience a day like today without the help of being pushed around by someone else, and that my body would only get worse

-Didn’t particularly want to take any photos while sitting in wheelchair, but also didn’t mind as much as I used to

-my brother seemed kind of bored at times, and it made me feel a bit more like my family wasn’t enjoying with me but simply accompanying me to make me happy, which made me feel a little burdensome :/ but they did seem overall to enjoy themselves on the rides.

Other Pros:

-During the plane ride here, I saw a brief moment where my dad sort of held my mom’s hand for a few minutes-  Why it’s significant:  I don’t think I’ve ever seen my parents affectionate much like that, esp for no particular reason (like leaving the country for a month) I thought it was nice.

-I had a heart to heart with my mom on life randomly last night, just talking about some of our problems and experiences we have had with people in general

-my brother more than just the typical gestures of niceness like treating us to dinner today, but actually asked me if I was okay at one point and also asked me if I needed oxygen in the car, and that meant more to me than treating us to dinner tbh

-The Harry Potter castle ride was FREAKING AMAZING.  So was drinking butterbeer and seeing Hogsmeade.  An Ollivander’s wand is $70- I would buy one if it actually had magical powers… but instead, I settled for a Gringotts key keychain, and a Pumpkin juice drink for souvenirs.  Also had two delicious dinners in a row, one at Sonny’s BBQ, and today at Bubba Gump’s Shrimp restaurant. YUM.

-Other highlights:  The Incredible Hulk, the first roller coaster I’d ridden in like 10 years… really fast and smooth.   the Skull Island King Kong one was not bad as well.  Seeing cute little kids geeking out in full Harry Potter capes and waving their wands made my day.

I’M DETERMINED TO HAVE FUN.

 

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.