Apocalyptic Winter Snowstorm… before Thanksgiving

Yeah… so forever remember November 15, 2018 as the most insane weather I’ve experienced.  The amount of snowfall wasn’t the most we ever had, however it was definitely one of the most unexpected and terrible drives I’d ever had to do.  I got out of work at 3pm, and didn’t arrive home until a bit past 8:30pm.  Granted, I camped out at a Starbucks for over an hour, but it was still crazy out there.  At first, I was patient and thought it would maybee take two hours, so I tried my best to whack the snow off my car windows although I didn’t do a great job with my umbrella.  I went to my usual gas station in Union to fill up before heading out on the roads, which was a very fortunate move that definitely helped avoid a bad situation turning into worse.  I tried to get more snow off my windows there, and on the local roads I couldn’t see the lines and couldn’t tell if it was one or two lanes.  My car slid around a few times which was terrifying, but again, all the cars inched along carefully.  Before I reached the gas station, I couldn’t see out of my rear window at all,  Once on 78, everyone was again, inching along, and I began to pass by a truck or car on the very side of the highway, diagonal as if it had spun out of control or just headed to the side with their emergency lights on.  I didn’t think too much of it, and kept going.  After about probably an hour, my GPS updated, telling me I could save half an hour if I exited from 36 instead of 33, or my usual 29 to get onto 287.  This update was a huge mistake, and I made an impromptu judgement call to trust Google Maps.

Allison called me while I was on 78, and we both complained about how slow it was and how bad the roads were.  At this point, my phone was still relatively charged, and it was plugged into the car charger, so I didn’t worry too much.  Once I exited 36, the real trouble began.  Stupid me didn’t listen to Allison, and decided to try to make it through Warren, but Warren is hilly, and at this point it began to rain too.  On the main roads, people were continuing to inch along, but then civilization slowly started to disappear as my car followed a few other cars into very local routes into woody neighborhoods.  As I was about to reach a turn there, I knew something was wrong.  A police car with two officers was stationed at the corner, and up ahead, as well as to the left where I wanted to turn, a few cars with their emergency lights blinking were scattered.  A truck included.  We all were stationed there for 10 minutes… 20 minutes… 30 minutes… at this point, I started to panic a little bit.  I was at the turn when an old man with a mustache, probably in his late 60s, came to my side and told me that both road options were uphill, so the cars couldn’t make it up.  The car ahead of me had managed to make it through with some pushes from him and another kind man, and he told me I could try after that car.  However, in the opposite lane where the car had escaped, a huge plow truck was approaching, and then I realized I was stuck in the way, unless I tried to squeeze into the right lane turn, so I did.  After the plow truck was eased through a few minutes later, the old man came to me again and told me I should probably turn around the way I came and try to escape that way, as this hill was icy too.  He helped push my car around, and I drove the way I came, slipping and sliding around, even at around 10 mph or less.  At this point, the panic was really beginning to become apparent that I might not find civilization or get out of the woods for hours.

As I tried to follow my GPS, I went against its directions a couple times as it kept trying to lead me up hills and darker neighborhoods.  But the next best hope I had going had a roads closed sign up, so I had no choice but to make the right turn before it.  I saw more stranded cars just stuck on the side of the roads, and another car that had apparently spiraled into the back of a truck.  Many accidents.  Another turn, and I was in another neighborhood, where a bunch of cars were struggling to make it up hill again.  I quickly made a left turn so I could turn back the way I came, but behind me, a plow truck showed up, and I was stuck behind it.  I realized my phone charger was not outpacing its usage, and I was at about 7%.  I called my dad, almost broke down, and quickly shared my location with him and asked him to help me find a route out that wasn’t uphill or closed.  I felt a sense of helplessness settling in, because I realized I could be stuck here forever where I had no idea where I was, with no phone or GPS to help me, and I would end up cold and lost and dying in this weather and situation.  Again saved by luck, as my phone was down to about 3%, I quickly searched for the nearest Starbucks, and luckily there was one 1.4 miles away, and the plow truck moved out of the way so I could leave.  I was relieved to pull into the Starbucks, where there was warmth, other humans, and some electricity.  At this time, it was around 6:30pm, and I was tired, anxious, thirsty, and desperate to charge my phone and pee.  Thankfully, I had a pretty speedy outlet charger with me, and I sat there and called my dad, and Meaghan talked to me as well, trying to help me figure out a path home.

I rested, bought a drink and asked for hot water, and sat back down where I saw about three other people also sitting around.  Meaghan told me the road that my parents and I had agreed on trying was closed further on, and so I would do best to avoid it and try Route 22 through a safer detour that wasn’t hilly.  I saw on the map that Route 22 was all in red, so that made me nervous too.  Thankfully, there was a chance I could take a route downhill, since it wasn’t uphill I could probably make it and it wasn’t closed off.  I saw a tall black lady walk in, asking the baristas for help and directions to Route 22, so I came up and told her what I knew, and we both chatted for a bit and it helped calm us down.  Soon, one of the Korean girls who had been there before me chatted with us too, and she said her car was a rearwheel and straight up was stranded in the snow; she tried to call a tow truck company but they said they wouldnt get there until 5-6 hours later.  Thankfully, a police car pushed her out the snow and told her to head to a Starbucks to wait it out.

I was worried about trying to head out, but I told myself I’d wait for my phone to charge to at least 70%, and then at about 7:50pm I wished the ladies luck and got into my car.  The roads looked a bit abandoned at this point, ground still frozen looking, my car still sliding around, at one point at another intersection, it wouldn’t let me brake and continued sliding right into the intersection through a stop sign as cars from the right were moving forward.  I really thought this might be the end, and we’d all be in a giant accident, but we were all moving carefully enough that the cars saw me and slowed down even more.  A few times, my car almost didn’t budge, which was also terrifying.

I finally got onto morning glory road, which was a pretty steep downhill on the mountain, but thankfully there weren’t many cars besides another stranded car, and once on Route 22, I felt much better.  The cars were moving slowly, but the first half of it the roads were pretty clear, and it wasn’t all jammed up like it suggested in red on the maps.  I got home a bit past 8:30 and Meaghan had called me about 5 minutes before I arrived home.

I was so stressed out and in shock, my body was tense, and today my dad told me to take off as the roads were still bad, and especially in our local area, it really looked like nobody had come to plow it.  After talking to Meaghan, I decided to listen to their suggestions and called my boss to take off.  I went back to sleep and woke up at 3pm, with a bunch of really terrible dreams that did not help calm me down.  Meanwhile, in California the wildfires have burned down an entire town and over 50 people are dead.  Is it just me, or the world feels like it’s apocalyptic all around?  Are the 7 signs of Jesus coming here?

Today, because I had to go out a few times last night in the cold, my lungs were wheezing a bit, and I’m not sure why I still live here.

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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?

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.

 

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.

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.

 

 

 

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.

My Story Now in Insomnia: 19%

So I said this blog was going to be a space of good health and all that… but the past couple days have been really hard so I’m just going to be blunt and lay it all out there.

I don’t ever want to return to that feeling of hopelessness the way I felt for months two years ago, but it’s pretty damn difficult.  It really feels like the whole world is working against you in more ways than one.

I’ve been riddled with multiple ailments since I was a kid, and the one that’s affected me the most is my chronic lung disease.  Sometimes you dig yourself into a hole thinking about what could’ve been, and how much easier your life would be if all you had to worry about was hustling and getting a job and all the common problems.

I am only left with a lung function of 19%, and am literally living life on the edge.  Even on a day of not sleeping or overexerting myself or stressing out, I feel it immediately and need to take time off to just recuperate and rest.

When I was three, my mom and brother got really sick with pneumonia and I caught it as well.  After what appeared to be a normal check up, I was suddenly hospitalized and sent to the emergency room, where I was in severe care for a few days.  I remember looking over and seeing a black girl a bit older than me in a bed next to mine, and she smiled at me. I remember a few of these rooms, and even now when I smell alcohol and this weird hospital soap smell, it sends shivers down my spine.  I remember days of just being surrounded by dark curtains, where all I had was a sad TV to look at with cartoons and other things I wasn’t really interested in, but being unable to ask anyone because it was late and all the nurses were tired and tending to other things… in addition to my having a tube put down my throat so I couldn’t speak.  I remember someone occasionally coming over and asking me if I’d rather have a blue or pink pad to rest my IV on, and nurses cheering for me because I’d finally pooped after being bed-ridden for endless time.  I remember some nurses crowded in my room watching TV, someone coughing, and one nurse offering me ice cream even though my parents freaked out later as some other doctors deeply believed it would adversely affect my breathing condition.

Even now, I find it ridiculous that the hospital was so unsanitary that they would allow nurses to cough in the rooms of at-risk children like myself who were easily exposed and heavily affected by any form of contagion nearby.  I wondered if this was how I caught a virus that nearly killed me, weakening me so much that I could not leave the hospital for the next six weeks.  It nearly completely ruined my lungs.

When I was finally able to leave the hospital, there were many sleepless nights where the silhouettes of my parents hovered over me, measuring my oxygen levels, feeding me some sort of Iron drink, and giving me breathing treatments.  The first night back at home, I was so weak that when I wanted to seek my parents out, I dropped out of my bed and dragged myself to the edge of the stairs to call them out… I can’t believe I still remember this, and every time I feel the vulnerability of that helpless moment, I feel paralyzed all over again.   I was chained to an oxygen tank for many years, and this eventually changed to a portable one that was difficult and heavy for me to lug around in my still limited capacity.  I think I was finally able to get rid of it when I was about ten years old, but I was homeschooled completely until 4th grade.

My parents were Buddhist, but converted to Christianity when they prayed to God and I was able to leave Robert Wood Johnson.  After 4th grade, I was still easy susceptible to the flu and cold weather, so I was homeschooled usually from November to beginning of April, and this pattern remained until college.  This trend made it really hard for me to establish relationships with other peers, and I had more experience conversing one-on-one with teachers than anything.  At an early age, self-doubt and loss of confidence started becoming apparent when I felt like my health and inconvenient conditions wasn’t understood by many people, and I felt often like I was very vulnerable and at the mercy of my teachers or other administrators.  I experienced a lot of injustice where kids would walk behind me, laughing and taunting me to walk faster when I couldn’t and was so out of breath I couldn’t even defend myself.  I often walked alone because I was slow and couldn’t keep up with other kids, and I felt awkward asking my friends to wait for me, especially with my backpack.

Painful experiences included one time, when I had a long-term pass that allowed me to arrive late to class past the six-minute mark since my pace was much slower.  My sickness caused me to be absent for a couple days, and when I returned, during lunch period I walked the exhausting uphill path from building 100 to 800 to find my science teacher to make up a test.  One of the hall monitor teachers who had a reputation for being an asshole gave me the most difficult time when I showed up and lacking a specific pass from my teacher allowing me to find him for the test.  He drilled me on why I was in that building during lunchtime, and why I had arrived there about five minutes after the last bell rang.  I explained to him that it’s difficult for me as I walk slower, and he relentlessly questioned me, asking me why and almost mocking me as if I were lying.  I told him my teacher was expecting me for a test, and he allowed me to pass, saying I had better have that pass with me when I returned by him.

So there I was, so burnt out and oxygen-deprived, feeling like I had hiked up Mt. Everest, trudging on to my science room to make up the test.  Alas, the teacher looks at me, surprised, and says he wasn’t expecting me to come immediately the day after my absence to make up the test, hence he didn’t have one prepared for me.  I asked him for a return pass to lunch and told him about the man giving me a hard time.  He gave me a sympathetic look and told me the teacher is well known for being a jerk, handed me a return pass, and sent me on my way.  I was so disgruntled as I flashed the pass to the old jerk, and he had to squeeze in one last dig, asking me if I got my test done when there was no way I could’ve finished it in five minutes.  I told him no, and he said “I told you so” as I began my trudge back to the lunch room.

Other times, there were students I became friendly with and considered friend-quaintances, only to have them turn around in their seats to stare at me in April to ask if I was a new student:  in my absence, I had been easily forgotten as if I had never existed in their lives, and it hurt.

There were also gaps in my education where the time lapse in between transitioning from school to homeschooled caused some teachers to quickly skip over chapters in a hurry, whether they were lazy or whether it was to help me catch up as quickly as possible with my class, I will never know.  Some asshole teachers were not nice at all, and when I first returned to my high school math class, I asked Mr. Lynch if I could take the quiz Monday instead of Friday since I had not had a chance to go over a chapter with anyone, and he said “We can discuss it Monday.”  Monday, I came in, and he handed out the quiz.  I went up to him to talk about it, and he said “You’re taking it today.  We discussed it Friday already, what’s the problem?  If you did the chapter’s homework then you should be able to take the quiz just like everyone else.”  Needless to say, I didn’t understand a damn thing about sines and cosines, receiving a fat “U” for Failed, and unable to persuade him otherwise.

In the span of a few years, my old doctor had retired and I did not consistently visit a hospital in that time.  In high school, my parents took me to see a Morristown Hospital doctor, then back to RWJ for Dr. Hussein, and finally now, to where I am a patient at UPenn.

To make matters worse, my parents fought often, and I still remember the many nights when I felt really alone, sick and depressed- I would huddle in my bed, thinking I was going to hear my parents fighting in the next room over, or my mom bursting into my room to dish out some of her anger.  Other nights dragged on for probably months at a time where nobody spoke or communicated in the house, and I was forced to act as Owl Messenger to where my mom was holed up with her door closed, back to my dad where he was playing Freecell quietly.

My mom and I have a very complicated relationship.  I understand all that she has sacrificed for me over the years, but she was also riddled with her own depression and issues, using me as her therapist and complaining about her past, my father, and her unsatisfactory life, often of which I internalized into blaming myself for existing and for burdening everyone.  I felt so guilty and so silenced, and always worried that something was going to happen, and the whole house was always on eggshells or stepping on glass.

Over the years, our family has improved in many ways, and I went to see a therapist after my complete mental shutdown two years ago, and only then did things seem to start to get better bit by bit.  During that time period, my ex broke up with me and I found out I may need a lung transplant.  My parents were so worried about my getting too serious with a boyfriend, and freaked out, preventing me from living as normal of a life as I could for myself.  All the anger burst out of me, and I had no room to tolerate anymore.  For about two months, I was riddled with thoughts of suicide and sleeplessness.  Every second in existence was agony, and I would cry and squeak out jokes at my best friend that I would be tempted to cut myself if I only knew where the veins were, or I would like to drown myself in the bathroom if only there was a bathtub and not just a shower head.

She came to stay with me a few nights to make sure I was okay at school, and probably saved my life, sleeping on the floor in my room and listening to me as I cried over and over again.

My mom has hovered over me like a helicopter parent, trying to shield me from all the bad while simultaneously making me paranoid and aware of a lot of negative things.  I think depression runs in our family, and battling to gain happiness has always been a huge challenge.  I have no doubt in my mind that a lot of the anxiety and depression I feel is related to her own draining energy, but I still love my mom and appreciate all that she has done for me- I just need space and my independence, and yet it seems impossible since I will forever need to rely on my parents for many things.  Will I ever find a significant other to care for me unconditionally?  My parents will not be around forever, what will I do then?

And honestly, as much as I want to wholeheartedly have faith that everything will work out, nobody knows for sure.  There is so much in Christianity that both troubles me and gives me hope.  But in all seriousness, why is there so much suffering, cruelty, negativity, and injustice in the world if there is a God?  I need some sort of justification for this, and yet every time I’m in a really dark place, I pray.  I can’t help it.  Help me figure it out.  Please.

So even now, it feels like I’ve accomplished nothing, and I’m just stuck here in a sad, sad limbo.  But that’s not true, I’ve managed to gain some good friends in college, I graduated, and I need to believe that there is more to my life than what it seems like now.

Depression, anxiety, chronic lung illness (bronchiolitis obliterans), ear surgery, insomnia… what else?  Occasionally, I will open up to a friend who asks about my story, and explain to them what I have.  You will have people who respond in a really unhelpful, ignorant way, saying useless, vapid stuff like

“But you’re such an inspiration!”

Or am I just a fucking reminder that your life doesn’t suck compared to mine?  or

“At least you’re not like, really poor and stuck in a Third World country where you cant afford medication,” or “Maybe it’s all in your head?”  “C’mon, it’s not really THAT bad.”

No, and no.  You don’t fucking know, so shut the fuck up, please.  How do you talk about yourself honestly without sounding like you were seeking pity or victimizing yourself, or downplaying your challenges?

I so envied the college peers I was surrounded by, who only cared about partying harder and ending senior year with a bang, where their greatest conversations consisted of how embarrassingly drunk they got and how they were going to make it through exam week.  I related more to other people of a different, more isolated temperament… and yet, I felt like I was constantly used by others because they knew I relied on and valued their friendship so much.  Even now, I only have a handful of people who really understand me, or recognize enough not to belittle me, hover over me, or differentiate me.

I am hypersensitive to noise and get easily irritated… when I read Chopin’s biography, I really related to his character.  Maybe it’s a symptom of people with lung/breathing issues, you’re always on edge, grumpy, and oxygen deprived, so it makes you whiny and irascible.

There are a million things I’m trying to accomplish, even though on the outside it appears like I’m doing nothing.  Part of me feels a deep, deep despair as if there’s no point in grudgingly trying to figure out my future or my next step, and the other half is freaking out at my freak outs.  So if you have any advice for me, I’d love to hear it.  But only if it’s of substance.  Please.

And Dear God, please help me figure out what my purpose in life is.