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.

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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.