Happy March! (2020) Good news

Ok, it’s technically March 2nd now, but I intended this for the first day of March.

Good news- last Tuesday, my Upenn visit actually had improved results!  Barium swallow went ok although it was unpleasant, and then my pfts went up! to 60%!  I think I was wary of being too excited about it like I was last time, because the fact that the doctors don’t know why it goes up or down is really scary.  It could so easily drop again, so I don’t want to celebrate too soon, but I think finally this week it’s starting to kick in and I’m starting to allow myself to dream again and envision a future I want.  The doctors think it could be a combination of anything they threw at me, including a possible delayed effect of the steroids back in December, or the additional medication they tacked on, and the fact that I was exercising more diligently.

Honestly, even though it would be great if pfts went up more, I don’t want to be greedy, and I’ll let myself be satisfied as long as the pfts are maintained over 50%.

——-

I’ve had this recurring dream that even though I already earned my high school diploma, I keep being stuck and for some reason, because I have no other options, I am repeating the same year of school over and over again, even though my age keeps going up.  It’s a bit of a nightmare in its ordinariness, but I always feel unhappy in the dream, sitting in class listening to some teacher in the background, until I come to the realization that I don’t need to be there, and I don’t need to ace the upcoming test, because I’ve already graduated.

—–

I also have this other thought that kind of concerns me a bit.  I wonder if reversed, if I had a friend like me with the kind of complicated, invisible condition, if I could put up with it.  The little things like letting them have the bed because they have terrible sleep and desperately need every ounce of energy, or being willing to pay more to accompany them in an Uber as opposed to the subway, or getting the weights for her so she can save the actual little bit of energy for lifting rather than carrying the weights back and forth.  All my close friends have done this for me, and I always felt like a terrible burden.  I also realize that I’ve always been a very impatient person.  I was restrained by my health, but now that I am more free, I’m not sure if I could really stand being so patient after being forced into patience my whole life.


I’m also gaining more weight than I’d like.  For some reason, I don’t know if it’s my diet necessarily, or my steroids or what, but the weight gain is bothering me a bit.  I went from 113 to 117 when I weighed in this past Tuesday, and then then next day hit 118, the heaviest I’d ever been.  But the following day, dropped to 115.  Now I’m actively dieting and working out more again because I’d really like to hit 113 by the end of this week, at least.

My ideal weight is 105-110.  I’m pretty sure I can do it, because I know what I have to do.  Last time I lost the steroid weight by eating oatmeal and a banana or boiled egg every breakfast, and just cutting out more sugar.  I don’t like having a weird turkey neck and puffy cheeks, and having a muffintop so that I can’t even properly bend down to pick things up…


The other day, I passed by the vehicle registration center… and I was planning to go in to register myself as a donor.  But then for some reason, last minute I swerved and continued straight.  I’m not sure why I did that, what was I scared of?  I guess I didn’t want to confront the possibility of death so soon, even if it was only a possibility.  But I know it’s what I want to do, but it’s still a scary thought to think about.

Feb. 8, 2020 What’s New?

Sometimes people ask me what I’ve been up to and how I’ve been, which is a pretty normal question.  What I’ve been up to I feel can’t be easily summarized in a sentence.  It’s part of juggling “everyday” normal life with chronic illness, even if I’m technically no longer a strictly COPD patient.  Not that I spend every waking second worrying about insurance, but I’m my own secretary essentially.  I often have things scheduled on my calendar like “call back Christine from Horizon” about some question, or figure out why my claim got rejected, which can alone take up to 2 hours on the phone because insurance is often disorganized and non-transparent.  -_-  I have to figure out why this lab accepts this insurance but not this other one, and which one would save me more money.  I have to keep tabs on all my medications to make sure I don’t run out of refills, and I often message my transplant team for random test results and updates.

I also, still cook, clean, and bake a lot.  I’ve taken this habit of tidying up the house late at night after my workout, which is strangely calming.   I like to straighten the magazines, put things away in the sink, puff up the pillows and fold the blankets in the family room.  I also cleaned out the medicine cabinet with all the random expired meds, and re-arranged all the magnets and important pamphlets on our fridge.

I also enjoy browsing the internet to save future recipes, and this past week, I’ve spent a good amount of time reading up on health insurance policies and how they function, as well as architecture.  I also finally finished Andrew Yang’s first book from I believe 2006, “Smart People Should Do Things”.  Politics is not fun, but a necessary evil.  He’s growing on me, I have to say.  He has some interesting concepts and ideas, so I can say I have one foot hovering over the “Yang Gang” zone.

I also still keep up with my mukbang Youtube videos, and looking into online courses that could be helpful.  Also, drinking enough water, which is weirdly a huge task.  I noticed I am about 15-20 oz under my goal unless I am aggressively conscious about it.

I’ve been playing with my dog a lot more too, and making sure that I get out of the house every few days, whether to see a friend, or get an errand done.

So yep, that about sums up my February so far.

Chasing Inspiration

The word inspiration is so easily thrown out sometimes I feel like it can lose its meaning.  I think maybe these days I’ve in a rut or just stumped, and I wonder if I should take it more easy and not stress and overanalyze on things, or if I should push myself more to chase inspiration and find it.  It can often feel like most of the people around me have their life figured out, even though I know it may not be the case.

Things I’ve been doing to try to get inspired:

-Listening to music on Spotify A LOT and listening to modern classical pieces, as well as asking friends to send their favorite music to me

-Reading a bunch of books and working my way through this UN article on accessibility

-Worked out late last night with yoga, squats, and curls, and realized how quickly I became out of shape 😦 Felt rewarded though for setting aside 1.5 hours to focus solely on my body.

-Constantly tracking my diet and my liquid intake (HYDRATION!!!)  Reading up on nutrition and browsing tons of vegan and other recipes online (I bake a different recipe each night).

-Stalking musical and other types of people I admire on Twitter

Current book- “The 48 Laws of Power”: 

“Never waste valuable time, or mental peace of mind, on the affairs of others- that is too high a price to pay.”  

“People are of infinite complexity and you can spend a lifetime watching them without ever fully understanding them.” 

I’ve only read the preface so far, and I can see this will be a hefty book to get through, but I’m intrigued.

Conclusion after preface:  Power is always present and in effect whether or not you’re consciously participating in it.  Learning how it works and at least being aware of it is good, so that you’re not taken advantage of by other’s manipulation (whether they’re conscious of it or not)

Keeping my eyes on the prize:

My lung function had decreased by almost half, and it was pretty disheartening to see.  I felt a bit more hopeful since after exercise it went up by a few percentages.  What will get me through this winter is all mental.  You need mental to do the physical.  Mental is everything.  I need to keep trying my best so that I am ready for the day I am “free”.  I may have written my to-do list already, but these are some of them that I look forward to:

  1.  Traveling with a friend somewhere, and then all places on my immediate list (Vancouver, Yosemite Park, Portugal, Seville, New Zealand, South Korea, Singapore.)
  2.  Interning in a different city/country for 3 months
  3. Ziplining with a beautiful view
  4. Doing a 5k
  5. Wicked at Broadway, and walking all over NYC

Winter To-Do List:

-Coding bootcamp prep

-Lose 4 pounds and get fit

-Read up on accessibility

-Record some new compositions

-Korean 15 min a day

-Attempt networking

-Make a personal website (?)

-Stay alive

 

Productivity and Savoring

I’ve had a solid good week.  Been feeling pretty good lately.  It’s a combination of I’ve been making conscious choices to keep busy and stay productive, to make the most use of all the energy I have now, and my parents are also in a good mood.  The weather’s been pretty perfect lately, in that 70s range, so I get to go out on walks.  Last weekend, my brother came home and we went to a farm and also hiked.  The day before that, we walked at Duke Island Park, and both days averaged around 2.5 miles, so I felt pretty accomplished as I’d been trying to hit 2 miles for awhile.  The next goal is to stay at 2.5 miles more consistently, and to eventually hit 3 miles, then a 3k marathon.  I’ve been busy grocery shopping, cooking, hanging with friends, spending quality time with my parents and my dog, enjoying the weather, and today, I was pretty productive and proud of myself.

My parents finally went to Sojo Spa, which I was happy about since I was worried they would just never use the gift certificate I got my mom for her birthday last year, and that it would be too cold soon for them to go.  Thankfully, Sojo told me their certificates don’t expire.  What made me happier was that my parents thoroughly seemed to enjoy their time there relaxing in the saunas and spas, and also the beautiful view on the Hudson River.  They also enjoy the food I cook and the things I buy from the grocery stores, and that makes me feel happy to feel useful and to be able to contribute more now that I can afford to health-wise.

I have categories that I have to pay attention to, such as my nutrition and exercise, finances, social/fun activities, and goals towards my career.  I’ve been feeling pretty good in the nutrition and exercise category, although I could do better.  I seem to have hit 104.8 lb today, even though I mostly ate fruit and veggies and chicken noodle soup.  I’m trying to taper off all the sweets I splurged on since I could eat sugar again without being diabetic.  I would be happy at a 101-102 lb range, and also because the steroids I’m on have fluid retention in my cheeks, neck/jawline, back of neck and stomach.  I feel slightly unattractive, but I know there is potential to get stronger and change those things, so I feel hopeful and motivated to be more in control of my diet and exercise now.  The only thing I think I am suffering most in now is finances, but it’s not like I’m living in poverty.  I just need to stay on task for the skills I need to build up in order to eventually get a job next year.  There is a lot I can learn independently these days with the internet and all the free resources.  I can’t wait for the first trip I can take with a friend next year too!!  Been planning out a ton of itineraries lately and bucket list.  It’s so exciting.

I’ve been savoring many moments lately, appreciating every hot shower I take, appreciating that I can wash dishes even after I cook because I now have the energy to, and being grateful that my parents worked hard their whole lives to save up so we could live in a beautiful house with a nice deck, plants, and a big backyard.  It has become more and more apparent to me just how blessed I am, that every single thing I own and have is not anything I “naturally” have a right to.

I started watching the new season of Terrace House, and I really enjoy it so far.  There is something really zen and relaxing about this show.  I also have been making an effort to study and read up on some coding for at least an hour each day.  Today, I spent about 2 hours practicing Op. 10 by Chopin, a piece I’d always wanted to know how to play by heart, and also playing with Moonchi.  I also spent some time reading “The Chinese in America” by Iris Chang, a book I’d borrowed from the library for a few months now and never truly got around to.  It’s very interesting, although not necessarily a relaxing or fun read, it’s very informative.

Enjoying Life

It’s really easy to be stuck in a state of anxiety these days, and my sleep has been pretty inconsistent.  Whenever I have so much as a headache, my state of mind goes into panic, thinking it’s the first step towards rejection or infection, and the thought that I could easily land in the ER again tomorrow.  I’ve been trying to take it day by day and relax more, and the upside is that I enjoy every little good thing, and I am more willing to live in the moment and train myself to stay in the present.

It’s a bit hard to find that balance between staying cautious and careful especially in public (i.e. wearing a mask, staying away from crowded places), but also not to the point of being miserable and being fearful of enjoying life.  I’m happy to listen endlessly to Spotify because I can focus now, without nausea or feeling overwhelmed by the sounds while in pain.

I’ve had a constant headache these days, but noticed that it goes away when I go out, either for a daily walk or just to hang with a friend.  Every week, I look forward to little plans like catching up with someone, eating new foods, cooking different meals, writing and planning itineraries for future travel, and possibly grad school in a new environment, or studying towards a career goal so that I am more prepared when I can start actively going out in six months.  I am super excited to go grocery shopping by myself, buying bubble tea, eating mozzarella sticks and all the foods I couldn’t eat before.

Each day that I am not feeling ill is a blessing, and I am constantly reminding myself of this; it has been the upside thought when I am feeling anxious and stressed about the future.  Train your mind to focus on the positives.

Happy Fourth of July, 2019! *** (<- fireworks)

Today was a really good day, from beginning to end.  It’s been a pretty long time since I’ve had a solid good day where I wasn’t constantly sleep-deprived or worried or just somewhat restless and anticipating the next bad thing.  I just lived in the moment, and it was awesome to forget all the things I’d been thinking about nonstop. And it’s so nice to hang with somebody where it’s just effortless and fun, even when doing boring things.  Aka, my best friend.

First, we watched Avatar with our other friend online for about 1.5 hours, a solid few great episodes ending Season 1.  Then got ready to go out for a bubble tea and grocery shopping trip.  I’ve been trying to push myself more, and find active reasons to go out and move around more and exercise.  So I grabbed my portable oxygen, and we went to the new bubble tea place to try it out.  This was my second trip, and I wasn’t impressed with their salted cheese drink… it was just ok, just not something I’d crave in the future.  And also more expensive than I cared for.  Then we impulse-decided to go to Sunmerry and satisfy our craving for the best salted cheese green tea, only amplified by the mediocre salted cheese drink we just imbibed.  With that first sip, the world was right again.  Then we drove to Hmart to grab dinner, of which as we were standing there pondering, the sushi became 50% off, what a win.  Then we went hunting for her ingredients, and I also found an ube extract that I can use for future ice cream flavors and for cake!  So excited to try new things- I’ve got the Philadelphia Teaberry flavor extract “saved for later” list on my Amazon account- that’s next!  (I’ll also be receiving my cruelty-free bareminerals make up and metal cookie/ice cream scoopers soon!  That will make my life easier.)

Grocery shopping took a pretty long time, and I could feel my energy waning and burning up.  Finally, we sat down for a bit and then ran into a slight bit of traffic on the way home, due to all the pedestrians and police officers piling around the streets, hoping to catch some firework sights.  Then, after some rest, we set off fireworks on my driveway, which was a pleasant end to a pleasant day with good company ^_^

FOOOOD. May 4th, 2019: almost officially listed: Regularly updated

I’ve been trying my best to keep busy, with emphasis on activities that really require my focus and wholeheartedly occupy my time.  The main activities have been alternating between cooking, baking or making ice cream, and playing Mario Kart.  I’ve also been somewhat obsessed with tiny house videos on Youtube.   However, my parents are now marathoning Game of Thrones, partly due to peer pressure and curiosity from hearing about it, and partly because my brother managed to get my mom hooked last weekend when she visited him.  Even though she doesn’t approve of the gore and the nudity, the story is just too good to ignore.  So now we are binge-watching when we can, and it’s nice to be invested in something together.  My parents are also amping up on gardening, and full out mulching, buying plants, a gate for the deck, and decorating the backyard.  I guess it’s our way of dealing with all that’s happening and trying to continue living life as well as we can.  I’ve always had to see the doctor about once a week for vaccine updates (hepatitis b, ugh, 6 doses total), and for my weird hives allergy.

Otherwise, I’ve also been reading up on books I’ve saved on my list for awhile now, especially regarding Pulitzer Prize, or New York Times bestsellers.  I don’t know why, but my curiosity with learning more about the Holocaust has now expanded to other war-related topics, such as Iris Chang’s book regarding the Nanjing Massacre and Chinese history in America, and currently I’m reading “Gulag: A History“, which I had no idea was about Russian concentration camps, but it’s weirdly interesting, although appalling to realize this is real history that happened to people.  How can so much suffering exist?  It’s almost like what’s the point of living a life of constant starvation, imprisonment, and fear?

Back to baking and ice cream making, which are the newest and least experienced activity I’ve taken up.  On the plus side, we have fresh desserts all the time now since I make it a point to attempt one recipe per day, or every other day (cooking counts too though).

I’ve made korean cold somen noodles with the sauce and cucumber and eggs, SO GOOD, my fav new dish to eat for the summer.

Baking:

  1.  Matcha Mochiko Cake:  3.8/5, 3.2/5
  2. Matcha mochi with red bean:  3.5/5
  3. Pound cake muffins:  3/5
  4. Sugar cookies:  4.5/5
  5. Golden raisin oatmeal cookies:  4/5
    • criticism:  not bad, not particularly exciting either
  6. Carrot cake with cream cheese frosting:  4.5/5  (2x)  
  7. Japanese cheesecake:  3.7/5
  8. Dark chocolate brownies:  3.5/5
  9. Castella cake (Japanese honey cake):  4.3/5  (2x)
    • https://www.justonecookbook.com/castella/
    • criticism:  slightly dry.  brown sugar visuals isn’t as clean as white sugar
    • made twice, second time used white sugar, and also it took 50 minutes, not 35 minutes for my oven.  Leave oven ajar for about 5 minutes.
  10. Jenn’s chocolate chip cookies:  4.6/5
    • criticism:  inconsistency in choco chips, and too few. a couple slightly overbaked
  11. Chocolate Crinkles II:   2.8/5
  12. Japanese cheesecake again:  3.9/5
    • used springform pan this time, better.
    • criticism:  didn’t rise as much as expected, fluffier than first time, but still not fluffy enough- oven temps are possibly too low, and/or took too much time to set up parchment and pan after whipped egg whites.  sides were overgreased, a bit oily/soggy, and flipping it, it fell apart, but overall success.  Would not do 300-250 degrees again.  Try 320-285 degrees instead.
  13. Sopapilla (Mexican cheesecake pie): 3.5/5
  14. Jjinppang (Korean red bean steamed buns): 4/5
    • https://www.maangchi.com/recipe/jjinppang
    • criticism:  didn’t wait 30 min for buns to rise and become fluffier before steaming, did not close buns successfully, flour slightly got dry
    • very ugly but delicious
  15. Scones + Lemon Curd:  4/5, 4.5/5 
  16. Japanese purin custard:  3/5
    • House brand – Instant mix, uses gelatin, which I don’t eat anymore (animal parts)
    • Just doesn’t look that appetizing, yields 3 mini portions; parents liked it though
  17. Chocolate chip cookies: 2/5 
  18. Pumpkin Bread:  4/5
  19. Quiche with Sweet Onion + Sharp Cheddar Cheese:  4/5
  20.   Tres Leche:  4/5
  21.   Cheesecake (Cheesecake Factory recipe):  3.9/5
  22. Pumpkin Pie Squares: 3.9/5
  23. Oatmeal Raisin Cookies IX:  4.5/5
  24. Sour Cream Muffins: 5/5
  25. Crazy Cake:  3/5
    • Brownie-like
    • Added way too much Bru instant coffee
  26. One Bowl Chocolate Cake III: 4/5 
  27. Martina cookies dipped in orange dark chocolate (sprinkled with pareils): 4.5/5
  28. Grand Marnier Souffle: 3.9/5
  29. Chocolate Pistachio Shortbread cookies:  3.9/5
  30. Pinwheel cake:
  31. Almond Jelly:
    • using agar agar

Ice Cream:

  •  Vanilla ice cream with dark choco chips :  A-
  • Matcha ice cream :  C+ 
    • 3 eggs recipe
    • fatty, with 1 cup milk, 2 cup heavy cream
    • criticism:  failed to temper eggs properly, ruined texture.  overhardened from churning inconsistency, and too much matcha (3 tbs).  Also should not use egg whites
  • Mocha ice cream with dark choco chips:   A-
    • 3 egg YOLKS
    • fatty, very rich, custard-like, creamy with 1 cup milk, 2 cups heavy cream
    • criticism:  not enough chocolate flavor, personally too creamy for me, also didn’t like dark chocolate I used
  •  Strawberry ice cream:  A-/A
    • eggless recipe
    • lowfat, with 2 cup milk, 1 cup heavy cream
    • delicious fresh strawberry flavor!  half pureed, half diced
    • criticism:  not creamy consistency enough, slightly icy
  •  Godiva dark chocolate ice cream:  A                                    
    • 6 egg yolks
    • very rich and creamy
    • added cheesecake and toasted almonds
    • criticism:  slightly too heavy for me
  • Badam ice cream:  A
    • eggless
    • 2:1 heavy cream ratio, less icy!
    • added brownies
  • Coffee milk tea ice cream:  B-
  • Mint chocolate chip ice cream:  B
    • eggless
    • mint extract + vanilla extract
    • criticism:  a bit too sweet (1 cup sugar, less than 4 cups ratio… error)
  •   Red bean ice cream:  A+ 
  • Watermelon Sherbet:  B+ 
  • Vanilla Ice cream II :  B-
  • Cookie dough Ice cream Sandwiches:  C+
  • Mango Sorbet:  A-
  • Ube Ice cream:  A-
    • used 1 cup milk, 1 cup heavy cream, 1 tbsp ube extract, about 5 oz. sweet condensed milk ( I eyeballed it)
    • first batch was burned with coconut milk, dumped 😦
    • deliciousss, even though the ube is imitation and a really small bottle. tasted a bit artificial though
  • Straciatella:  A+

    • eggless
    • used Nielsen-Massey vanilla madagascar bean paste
    • low-fat ratio
    • straciatella technique used with melted drizzled belgian dark chocolate
  • Upcoming ice creams:

Other:

  1.  Shakshuka:
  2. Spiced Naan
  3. Onigiri (spicy tuna)
    • made with onigiri molds
    • spicy tuna = canned tuna mixed with japanese mayo and sriracha
    • sushi vinegar + sushi rice
  4. Gingerbread cookies:  3.9/5
  5.  Pumpkin soup:  5/5
  6.   Fresh Garden Tomato soup:  4.5/5 
  7. Ultimate Twice Baked Potatoes:  2/5         
  8. Dakjim (korean braised chicken w/ glass noodles):  4/5
  9. Korean fried chicken: 3.9/5
  10. Soy sauce Noodles:  4/5

P.S.  I hate how insurance companies and random coordinators from hospitals call me up whenever, so it’s like I have to work extra hard to stay distracted and occupied with other things.  They could call me at 8am, 10am, 2:30pm, 5:00pm, really now.  And not that I’m exactly “busy busy” but I’m sometimes in the middle of sleeping, or washing dishes, making dinner, or in the bathroom, and I just have to drop everything and set aside 15 minutes or however long to discuss things.  I should be officially listed Monday.  A part of me thinks I’m insane for willingly sending myself in for this kind of surgery, the other part of me can’t wait.

4 Weeks Pre-Transplant Official “Yes” Mindspace

I am so bored… my mood was alright until the past few days.  Maybe it was because of my last therapy session where we talked about death, and a part of me just felt kinda bummed.  What if I die?  That’s just the end… and I really wish I could do so much more before my time is up.  I’m also so sad at the thought of leaving my family.  But these thoughts aren’t very helpful since they’re out of my hands.  It also could be that everything goes well and all this worrying was for nothing. Despite my hanging on to the success stories, there are so many people, young people my age who have passed away either through an unsuccessful surgery or after a year or two.

How to stay motivated and productive? IDK. I am actually tired of Mario Kart now since I play religiously for a couple hours everyday, and I am also getting road rage at Waluigi and other characters.  I’ve started trying some cooking recipes this week, but none of them made me that happy because it wasn’t super successful or delicious.  I have this weird thing lately where I keep trying to fill a void by trying new things and getting really excited, but then being like “oh that was just ok” after.  For example, the recipes, and ordering a bunch of korean instant noodles, and now looking at clothes and I want to buy everything, but I know I don’t NEED some of these items.

I have dealt with a few minor insurance things this week, and then wondering what to get my brother for his birthday.  It’s tough!  Hard to know what he would actually like or find useful.    I also finally measured my body parts so I know exactly what kind of clothes would fit me well.  I also contacted a couple apartments in Philly to get some information on the places we could stay at post-transplant recovery.

I’ve been continuously working on lessening my impact on the environment.  Steps I’ve taken the past year and recently:

  1.  Dropps – eco-friendly laundry detergent.  I can’t really tell the difference in the usage of it, but I only bought a sample pack so far.  It comes shipped in a brown cardboard box and dissolvable plastic.
  2. Hydroflasks + Swell – Reusable, High Quality Water Bottles for my family and me.  No more plastic bottles unless emergency use
  3. Reusable Grocery Bags – we got some wegman bags, but 50% of the time we forget to bring them or use them when we go grocery shopping.  Still in progress.
  4. Metal + Bamboo Straws – either reusing plastic straws that we have at home, refusing plastic when we go out to eat, and buying reusable straws instead
  5. Everlane clothes that are eco-friendly and also ethical.

Now my internet knows I’m interested in these types of things and I keep getting ads, which I don’t entirely mind.

It’s now Friday late at night, and I feel a bit better (I started this post at the beginning of the day).  Tomorrow my dad and I are going to bake and maybe go grocery shopping for a little bit.  In a sense, my dad is my best friend and the most comfortable person to be around, and he always does things for me with endless patience and tolerates my tempers.  In regards to the therapy session about death, I have decided to buy each of my family members and maybe friends a special gift, one that they will always associate with me.  It doesn’t have to be anything extremely unique or fancy, but something we had talked about or whatever.  I have decided to buy my mom a pair of earrings, because we have talked about it forever, and I want the design to be special from her other earrings, so I looked on Etsy.  I don’t know what to do about everyone else yet, but I have time.

Claire Wineland died at 21 years old after a lung transplant.  But she is my hugest inspiration and role model, because she achieved more and looked on life in a positive perspective that most people who have lived far longer will never manage or appreciate.  Time is truly short, and with that, she always enjoyed her time with her family and friends, did what she loved, started a foundation, gave uplifting speeches, and became an adviser for a movie (“Five Feet Apart”).  Like, damn girl.  And she managed to stay beautiful in every possible way.

While I’ve gone through a bum wave, I am now thinking again about what it would be like to walk more than a couple minutes and not be exhausted, to spend time hanging out with a group of friends and not have to recover the next day, to be able to explore and travel, in the cold and in the heat, walk up a slight incline or stairs and not be out of breath, holy fuck, I think the truth is everyone else is living the life of a superhero, but most people are oblivious to the miracle that they are and all that untapped potential.  The body and mind is made up of a million mini functions and organs that work together to keep you alive every second of every day.  To have zero issues in any of those departments is indeed, a walking miracle and the ultimate blessing.

What life has thrown at me, most of us will experience eventually, just I am going through it earlier and more intensely.  When faced with greater pressure and intensity, one can also manipulate the sour lemons into greater perseverance and make something bigger out of it.  I’m not sure exactly what that is yet, but I want to discover it.  Most of us are more alike than we realize; we can feel self-conscious, worry about what others think, and that can manifest itself in anything from using a wheelchair to having a pimple.  I guess in that sense, it calms me down to know that I am not that different after all, and definitely not that alone.

 

The Calm Before the Storm

03.14.19

I’ve been oddly peaceful lately… in some ways, this is preferable to crazy anxiety and insomnia, but I wonder if some part of my brain has become dumber and switched off an activation code lately.  I’ve reverted back to the days of a 7 year old relying heavily on their parents to feed them, get them things, and spend time with them.  It may be a coping mechanism, but it could also be that I have resolved on my plan for this year and just need to map out the kinks and details at this point.

For example, I am a Medicaid patient, and I had called them recently to get more information.  This week, I was sent three letters and packages in the mail from them, not small by any means.  These packets included a living will, a case manager they offered to assign to me to help me with all this confusion, and another enrolling me in a pulmonary education program.

Here are some things I really want to change in our healthcare system as well as disability assistance in common places such as work, our community, and our cities (I’m looking at you, NYC).  We should always have the automated doors, we should always have elevators or sloped walkways, especially when that poor mom fell down the stairs trying to carry both a stroller and a child alone down the subway.  These are two of the most basic disabled rights that I can think of off the top of my head, although I also think it would be totally fair to make offering straws illegal unless a disabled person requested one.  Even though disabled rights have improved over the years, we are still so far away from what is actually fair and equal.

Five years ago, I similarly went through rigorous research, but that time, my desperation and panic led me nowhere.  I messaged Harvard professors and emails prestigious sounding doctors, of which I remember one advising me sternly not to to seek any stem cell therapy centers, and to insist that I get a lung transplant.  To me, a lung transplant was the epitome of death.  Now, it is a chance for hope and a better future and quality of life, even though death is still there in the picture (I am actually going to be diving into the outlook on death for my next therapy session this week).

03.16.19

I’ve been on Youtube a lot lately and watching mostly mukbang videos, The Voice, and World of Dance clips.  But in between, I also watch Youtubers who share their lives in living with a disability, and there’s one channel that features an inter-abled couple.  I always felt like a part of me was more enlightened and more patient, and kinder, and understanding because of everything I’ve been through.  But a part of me also understands the comments that are incredulous, sometimes borderline mean, that ask how such a couple exists and is okay with handling the “burdens” of care-taking.  I think maybe a fear of mine is that even as a technically handicapped and sick person, I still hold prejudice and still aim to separate myself from other disabled people.  I remember one time in college, the Office of Disabilities told me I could hang out with the other freshman kid who was in a wheelchair.  I also remember feeling resentful that I was by default, lumped in with the other kid as if we were the same kind, and also resolving to do everything I could do to fit in with “normal” students, and not associate myself with him.  Some time later, I remember seeing him walking by, us making eye contact briefly, and me thinking he was pretty cute.  Eventually, he was walking by on a cane and often accompanied by an attractive girl, and I felt pretty ashamed for ever disassociating myself from him just because he was in a wheelchair.

I love my mom and dad, but to be honest my childhood was difficult.  My mom was always stressed out and this caused her to be very impatient, often getting angry with me for things that were out of my control, like having a poor appetite and not being able to finish meals, and eating slowly, and needing her to drive me to school everyday.  Looking back now, I am much more understanding of her experiences and struggles in raising a different abled kid, especially when neither of us really understood it, and she was already dealing with a lot of personal, separate problems. I guess despite my understanding her especially now that she is a lot more patient and calmer and we communicate more, I fear that I would be the same type of parent or girlfriend,  I would still run away or deal poorly with any signs of hardship that wasn’t solely my own.

Birthday Blessings

I am officially 26! … I have graduated from the bracket of age 18-24, occasionally 18-25.  Apparently I’m not truly “old” or in my “late 20s” until I’m 27.

I feel really lucky to have wonderful family and friends to make me feel loved.  Even though one could argue that my quality of life has gotten worse, that is only physically.  Mentally, I’ve become stronger, not without the help of therapy.  My perspective on life has changed, and I’ve grown more hopeful and better enough to fight for a future that could improve my possibilities of things I could experience, a life that I had only imagined since I’d grown up.  I’d be able to run, hang out with friends an entire day without feeling exhausted, I’d never feel short of breath again from walking a couple blocks or walking up stairs, and I’d never have to feel that dizzy, wobbly, bursted feeling whenever I did try to push that boundary.

I was pretty satisfied with a casual hangout with my college friends last weekend, and determined to enjoy the present for all the happiness it offered.  I kept getting expected and unexpected love, which included 3 delicious cakes, two books, a Nintendo Switch, a Nordstrom gift card, a heated blanket, balloons, flowers, and a lovely Cajun style seafood dinner with family.

My heart is full, and all these memories just remind me not to take anything for granted, and to keep trying my best for an optimal future with the people who matter most.

P.S. Got another last minute visit from my friend and her baby today (Tuesday)!  He is growing up so fast, this is my first time seeing a baby every couple months, and it’s crazy to me how quickly he picks up things and how beautiful of a child he is.  I also have firsthand appreciation of a mother’s full-time work in looking after another human being.  They gave me an orchid plant and another birthday balloon!  Whoo-hoo.  For reals, most of my life I was bitter and resentful of anyone who I thought was a friend but ended up not being there for me.  It may be because of my change in perspective, but all I feel is joy in mattering in other people’s lives, and that I have friends who offer to drive me to UPenn at all touches me.  We don’t know if we have another minute, day, week, years, or a lifetime to spend with our loved ones.  I’d always been on a rush to live as fully as possible whenever my body allowed me, and it only makes me more determined to live longer and healthier because now I have fully understood the meaning of life and my place on this earth, and I will not take it for granted if I had a second chance.