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.

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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.

Wake Up Call: Steps to Motivation

  1.  What I realize is that it’s important to acknowledge what’s not okay, it is therapeutic to take a break and treat yoself, vent your frustrations (to the right people), and then-
  2. If possible, meditate and focus on what’s still solid and good in your life.  And finally-
  3. Also if possible, work on motivating yourself, and-*
  4. (If possible lol), work on improving yourself.

*The Step 3 is important because motivating yourself, whether that means forcing your ass out of bed, giving yourself a pep talk, finding someone else to encourage you, is definitely a step all on its own, but people tend to skip it.  Without Step 3, Step 4 is nearly twice as difficult.

In application to today, my frustrations:

  1.  That hospitals are as susceptible to fuck ups as any other organization or business, except it’s people’s health and lives at stake.  Today, I was almost given an arterial blood gas test when it wasn’t ordered for today- some problems with printing or administration reasons.  Good thing I made them double check.  All the more vital to be aware of your own shit.  Treat yoself:  I spent quality time with my friend, took a moment to be proud that even on a comparably grumpy day, I was productive, and then of course, bubble tea.
  2. The positive:  I have a select few great friends who are willing to help support me and my burdens in this tough journey.  Today, I vented my frustrations, and my friend listened patiently, but also helped guide me gently with her advice, which is always so precious and useful and calming to me.  Secondly, I came home to my mom telling me she got into a car accident, and after initial shock, for a few seconds I tuned out her voice, just being fully aware that she is still in one piece, in front of me, and that I still have a mother.  No one was injured.  Thank God.  I am lucky and still have so much to be grateful for.
  3. Dragging my ass to to Upenn again made me want to complain incessantly, but writing on here is my way of motivation and clearing my head.  I want to keep working with the mindset that if I were to die tomorrow, what is the legacy I have left behind?  Have I made a positive difference in anyone’s life, and have I contributed usefully to this earth while I was on it?
  4. The rest is obvious, in that my friend was proud of me that I have been slowly, but surely so diligent in achieving my goals of studying and eventually obtaining my Google Analytics Certificate.  This is one goal that I will not let go as it is totally doable and there is no excuse for me not to have it.  The rest is being able to forgive my friend, even if it takes a lot of time, something I was and am having a hard time being able to do, because there was a loss of trust and loyalty, and that is everything to me.

#chroniclesofthechronic

 

Am I Scared? Yeah.

The other day, I was talking to an evangelist and gave him a very brief update on my life.  I told him about my evaluations coming up and he asked me if I was scared.  HECK YEAH I’M SCARED.  But thinking about it and focusing on it and letting it paralyze me from my goals and living life isn’t the way to live.  So I try not to let it disrupt me too much.

But I had a dream last night, one of those dreams where you wake up in a dream and don’t really realize you’re in one (Inception lol), and I was in a cozy hospital bedroom, and as I moved, I realized I could breathe a lot better than I ever did.  However, as I moved, I realized that there was a deep wound under my right boob, and I realized I had gone under some sort of lung surgery.  Then I was in pain, or however close pain can be replicated in your mind in an alternate reality, and then it was not so fun.

When I actually woke up, I realized that this alternate reality is not so alternate, and then I’d have to prepare for twice the amount of pain as a double lung transplant would mean an incision under both my boobs.  This is fear.

Triggered Memories and Hope: Subzero Warm Mask (Solution for Lung Patients)

Triggered Memories

I’m having a coughing fit and my mom tossed a bag of HALLS Defense cough drops at me, the vitamin c assorted citrus kind… and suddenly I thought of a memory probably from 16 years ago when my 3rd grade homeschool teacher took one out and offered it to me in my dining room, where I’m sitting now.  I was too young to understand that my education was at the mercy of my homeschool teachers, and at their kindness and understanding. It makes me more determined to teach compassion to those who don’t innately have it, and I get the whole annoyance of being “too politically correct,” but I also think there are way more people who have the sensitivity of a rock.


Hope

I was web surfing and thinking, what can I do to help my medical situation now?  To tailor my situation to help improve my quality of life, instead of moping on what’s happened and what will?  I’m thinking of investing in a Modobag, the travel suitcase that you can sit on and glide through airports for so I can save energy and make things a bit easier on my body.   I also came across a subzero warm mask yesterday, and if it’s as great as the comments say it is for people with lung problems, then I will be super grateful.  It would be life changing and help me so much in being able to navigate the winter and the cold and allow me to go out and spend time with people and do my job and so many opportunities that feel robbed from me.

August 12, 2017, Sat. @ 3.54am (technically 13)

#chroniclesofthechronic

Pt. 1 Overview

I feel like life keeps being really tough, and not just tough in the usual senses, but extra tough even when I’m just doing mundane, ordinary things. When people ask me what I did all week, sometimes I have to catch myself feeling sorry for myself, because I realize that my level of achievements can be considered small in comparison to others who are able-bodied and fast paced.  I can’t say anything exciting, but rather, I have to remind myself to be proud that each day, I meticulously planned out how to live in small increments of productivity and function, saving up energy to check off goals like laundry, cooking, remembering to drink water, and that I dragged myself out of bed and did these things, even though they were hard and do not match up to my level of ambition and what I would want to consider a “true” accomplishment.

My insomnia has worsened recently but I know why.  Hearing again that I need to see a lung transplant specialist wasn’t easy, but for some reason, this time a switch flicked in my head and I decided it was time to fully wrap my head around accepting doing the evaluations, no matter how strenuous that ordeal was going to be.  I constantly find myself wavering between moments of calmness and acceptance, almost contentedness, yet other times like last night, I lay awake in my friend’s guest bedroom, thoughts flying everywhere and causing an increasing panic in my head until I succumbed to the pill to aid me in sleep.


Pt. 2 Log In of the Day

What I originally intended to write about though, was happiness.  I had a rough week (what else is new, the usual levels are rough, rougher, and roughest), but today was a good day.  A solid, good day.

I had been worried that today would be bad, as usual. Yet it ended up being one of the best days I’ve had in awhile.  Friday night, we prepped hard for a dessert competition at fellowship, and even though we placed third, I felt pretty proud and we did bond with our team by working hard to produce a beautiful panna cotta.  And today, we went to dim sum and it was a lovely meal with a large group of people.  Then, I migrated back up north for another fellowship and met some people, and finally migrated back down where we spent a great night learning how to make fresh pasta and EATING it!!!  Seriously, the best pasta I’ve ever had… it was what I always imagined fresh pasta to taste.  Delicious, right amount of bite and sauce.  It was fun, and we had some sangria as well.  We also watched a bit of Master of None and the rest played card games.


Pt. 3 Insecurities on my Physical Capabilities, but also- Body Appearance

A crazy thing that happened recently is my weight gain.  I weighed around 92-95 lbs for the longest time, probably from all of college until now.  I weighed myself a few days ago, and each time it was the heaviest I’d ever been… first I hit past 100 and couldn’t believe my eyes… then I hit 103 within two weeks. I was getting a bit concerned… because even though I know I’m not concerned “fat”, I’m also now looking very “skinny fat” where the rest of my limbs are super bony, yet my stomach and cheeks are protruding…. I even have a muffintop.  Then I saw a few candid pictures of myself, and I was kind of horrified at my shape. First of all, my stomach protruded quite a bit around my lower abdomen area, but my legs were still super slim and lacking muscle… it reminded me of the Titan in “Attack on Titan” that was round and fat but stuck on a house with its long, super twig like legs.  I also have a TERRIBLE posture, and I guess from my tense muscles and all the stress of anxiety + breathing struggles, my shoulders are a bit risen up and hunched over, especially from the right side.  It really looked very unattractive to me.

I know that steroids do deposit fat differently for your body, and I guess I’d never been on it as much as I was in the past year, and particularly now that I’ve been on it for almost two weeks now to see if I can improve my lung function.  While I was never super concerned with my body appearance prior, I was never a super fan of my body either and just thought the major complaint was that I was too bony all over, especially my bony knees and lack of butt.  But now in addition, my lumpy waist and hunched shoulders just all in all are a mild devastation to me, psychologically.  I don’t think I’ve ever felt actual unattractiveness like this, even when I’m just in bum clothes and glasses and hair that hasn’t been washed in over a week…

Steps to take to stay determined:

  1.  keep working out and doing planks + gym as I can at least 2 times a week
    1. particularly, strengthen back and chest workouts, and legs… and arms… ok basically everything
  2. try to lessen sugar intake and eat more vegetables, fruit, and protein (find more delicious recipes + buy healthy foods)
  3. keep being productive in writing music for grad school
    1. sign up for GREs/ plan a date
    2. shoot emails to professors sometime in late September asking for recs
    3. keep doing research on other grad school programs
    4. follow up with Monica on online graphic design program
  4. do things to make yourself happy, like walk with Meg around neighborhood, hang out with friends
  5. TREAT YOSELF –>  bubble clay mask, hot  bath, hair treatment at salon, massage, leg wax/ exfoliation, clean make up
  6. Express yourself –>  continue improvising on piano, learning Chopin piece, also Photoshop + Illustrator (empowerment of chronically ill women <superhero with treatment mask>  <cute new kinds of hospital wear…>
  7. Google Analytics / Hubspot /Lynda Academy for digital marketing, etc.

 

 

 

A Small Achievement

Letting go of pride.  A lot of self-care and confidence is reframing how you feel about yourself, and letting go of pride enough to realize that you can still retain your dignity even when you feel you’ve lost it.  As much as I tell others that sharing and revealing a part of your soul makes you feel like you’re vulnerable like an open,  bleeding wound to others, it’s part of what makes you human- the first part is letting others know what you’re going through so that they can help you.  The second part is that despite our worst fears that we look silly or weak, I’d say 95% of the time, you just simply earn more respect for speaking up and being open in the first place.. it increases trust, and you are a leader in paving the way for others to see your imperfectness, so that they may allow themselves to become vulnerable too and share.

Yesterday, at girl’s group, I took out my inhaler and used it, then joked about gargling.  All of them watched me, and asked me questions about it, especially the ones working in hospitals.  I was feeling confident, or rather, content, and somehow that made it feel safe and okay to talk about my inhaler and not make me feel like I was isolating or making myself look like a sick person.  And it felt good.

Ironically, letting go of my pride made me feel proud.

Accessibility and Judgment at Broadway

Today, I want to talk about one of the reoccurring experiences I still struggle with accepting and going through, and that is first of all, how the lack of accessibility and modification of transportation in NYC is a huge detriment to many people who need it to get around and get opportunities.  Second of all, being strong enough to withstand judgment from others, whether friends or strangers, on your invisible needs, and probably getting judged for it.

One thing I constantly have to be conscious of is how quickly I use up my spoons for the day.   I modified some of my plans to tailor it to my needs, such as taking the train station in that is direct into the city.  Second of all, I decided in the cause of preserving my energy, I used the elevator once I got into Penn Station.  Third of all, even though I ran into a minor bump by trying to order a Lyft, and then ending up taking a taxi, I met up with my friends and got my taco as well.  The broadway show Cats was a little weird since I felt there was no plot, but nevertheless I enjoyed the experience.

I was a bit tired, but during intermission went to seek out the handicap bathroom in which I found myself in a line of mostly elderly people with bad hips and canes.  I knew I looked like I didn’t belong there, but I also knew in my mind and heart that I deserved to be there and it was my right to use that bathroom.  What wore me down a little was a few ushers swinging by, looking right at me and speaking mostly directly to me that they “highly encourage those who are capable of taking the stairs to do so with the one downstairs”… after the second time, I got a bit defensive and exhausted, and told them there was a reason why I was using that bathroom in particular.

It was also annoying that the old lady in front of me invited another older man to cut in front to use the bathroom…  I let him do so, but I wasn’t sure if it was out of kindness or guilt that I didn’t belong there.

Later on, we quickly racked up prices in using Uber to get around to the udon restaurant… It sucks that this is an extra price to pay as someone who has disability conditions, much like a woman having to pay for tampons and other needs just because she’s born with a vagina and menstruation cramps.

The world isn’t fair, and we have to try to find the courage to speak up for ourselves and for others.  Acceptance is key, and I’m on my way there before I can embrace it and fight for the rights that we are entitled to.

A Good Day- June 3, 2017

I don’t know if this is relatable to the general population, but for me as a person who struggles with disabled conditions, to experience and live a good day, is one of the rarest but most satisfying feelings in the world.  The days included among my happiest was such as the day I sat in a Venetian gondola, the day my study abroad friends celebrated meeting me on my last day in Taiwan, and a day at work where a bunch of little kids helped me plan a surprise party for my co-counselor.

Yesterday was a good day.  Even though I still struggled with my condition and the usual limitations, I still got to live and be with friends, and I felt that was one of the most important, gratifying feelings, just to have, and be present.

I woke up at Allison’s, went to Girl’s Group, ate delicious cookies, sandwiches, experienced my first cold brew coffee with french vanilla creamer, got mind-blown, went on a timed, spontaneous yard sale spree with Allison from 3-4pm where she hit the jack pot at another church with a $5 a bag deal! She got a beautiful entire tea set in addition to other glasses and miscellaneous things.  I finally did spend on a $3 bracelet that I thought looked very unique, it had 5 burgundy jewels and was elastic, so it was easy to slip on.  Satisfying good purchase and deal 8 )

I left her house to drive to Montclair and find Cuban Pete’s for Jon’s birthday.  It was a little rough as I didn’t know the area and realized parking was very difficult, but I heard the restaurant was very good.  I was the only one to get there at 5pm, another group arrived around 5:15 and the rest arrived closer to 5:40.  I found street parking by luck about a block away, found Glendyll and Amy inside the CHAOTIC restaurant.  It was so packed there wasn’t even room to comfortably stand… I was told the wait was 2 hours.  I went outside and sat on one of their chairs, and Jenn, Abby, Jordan and Nate came to find us.  This guy who seemed a little sketch came up and asked one of us to go with him to hook us up with a table, and he got us a table for 15 around 6pm!!  We were pretty excited, and the mango and pineapple sangrias and food was pretty great.  Afterwards, I was a bit annoyed as the group couldn’t make up their minds on what to do and just wanted to walk around.  We took pics outside and then after awhile, I was tired and decided to leave them to it and go find Allison, who was with Jeannie at Steve’s house.  Turns out, Sean and Sam were also there, so we just chilled, discussing VBS and talking.  Around 10:30pm, I gave up on waiting for Amy and was tired, so I decided to go say bye to them at the bar and drive home.

Even though I got borderline annoyed that they couldn’t make up their minds on a set plan and just wanted to wander around even though a couple knew that I tired easily, I guess I felt fulfilled and proud that I could do as much as I did on a beautiful day.  The day was perfect weather – about 74 degrees.

She Needed a Hero

“She needed a hero, so that’s what  she became.”  -Pinterest somewhere

Sometimes, life gets to you.  And I think especially with people dealing with chronic illnesses, it can feel so constant and repetitive like a truck repeatedly running you over.

These days, as the weather gets colder and colder and we hit the 20s at night, I am more and more susceptible to darker thoughts of depression and wanting to give up and lay in my bed forever, to avoid all risks and perils of being outside.  I had a moment a couple nights ago where I realized it was food poisoning later, but that night I felt such discomfort and anxiety that I felt like I was going to lose my mind… I had been feeling this crazy anxiety all week, and insomnia was hitting me so hard again.  My body couldn’t relax, my thoughts were clouding my mind, and as much as I wanted to calm myself and tell myself that it was all temporary, just a bad night of nightmares mirrored in reality, I got scared with fleeting thoughts scattered into my brain of temptation.  The worst kind of temptation, where I thought it would be better to slit my wrists, drown myself, than endure more of this never-ending suffering.  And I knew I would never follow through with it, because at the end of the day, it does take just as much courage to end your life as it does to choose to keep going, and I picture images of my parents looking at me, horrified by how much work they invested to help me, and I failed them. But I felt like I was being repeatedly punished anyway when all I wanted to do was be.  Not constantly survive, but just exist.  Float around, and try to achieve some “normal” milestones in life, like get a job, maintain a social life, date, explore.  Because all of that isn’t already hard enough by itself, right?

The feeling I’d been having deep in the pit of my stomach lately is mainly anger, and then guilt.  Feeling like I am not a good enough friend, or daughter, while struggling to fix what’s on my plate.   And trying to make sure I’m vulnerable and open to other people with my struggles, but not overburdening them or scaring them away with the amount of problems I have.  Nobody likes being around unhappy people.

In addition, once you share that information with people, it can either go really well or downhill.  People might start to distance themselves and you become “the Other,” the sickly one they don’t really want to deal with… or they start hovering and panicking and treating you like you’re really different and need assistance with every little thing, like you’re useless.  That’s how my grandma and cousin reacted and it became really exhausting and annoying quickly.  Or I suppose, there were the few handful of great friends I still have now who have always treated me like a human being, but put into consideration my needs whenever I needed, and I will always treasure and love them for that.  Sharing their day and problems with me, just as I do, the way it’s supposed to be:  Equals.  No pity, no ignorance, none of that shit.

Secondly, trying so hard not to be consumed by fear.  Fear that I am not capable of being loved, that no one will ever be able to or want to deal with me, fear that I have nothing to offer them.  Knowing all of it is not true, yet somehow still standing here, wondering.

Thirdly, just the isolation.  This is about to sound real emo, but it’s crazy how many times I’m surrounded by so many people, yet feel so alone.

Some days, I’m able to work through it and just think, fuck it, I’m fine.  Everything’s fine.  Just breathe.  Other days, and it’ll get worse as we get deeper into winter, I can’t help but feel shackled to a singular spot, paralyzed by the knowledge that I both know and don’t know.  What I can expect, and can’t expect to have out of life.

And then the people that I feel relatively comfortable around and at peace with, at the same time, don’t.  I’m tired of hearing people use the common response “Pray about it.”  I very much want to give in that it’s out of my hands and part of a greater plan, but I can’t.  Do it.  Maybe it’s my resistance to giving up which is what it would feel like, or my inability to just hand over my faith blindly, and I want to pray to God and ask him for help, yet things in life still keep rolling on whether or not he’s really answered.

Am I believer?  I don’t know.  Do I believe Jesus died on the cross for our sins and is our Savior?  I’d like to.  But I don’t know, I don’t know, I don’t know.