Mundane Update on Terminal Illness and Such

It’s summer, and it’s usually where I’m doing relatively well, as well as I could be doing for my condition anyway  (COPD).  I have a part-time job that is manageable, and it’s as normal to normal as it can be – I have a set schedule of waking up around 8:20am everyday and coming home by 4pm to rest, eat dinner, prep, rest, repeat.  Even the pill popping at night has become a pretty standard routine that doesn’t bother me much. I stay busy physically and mentally, but then comes the visits to Upenn every month or so for fv1 testing, and sometimes it’s okay, some other days it’s less okay.  The past week, I’d been trying to obtain a note from my lung transplant team verifying the medical needs of staying with the same psychotherapist who treats me with anxiety and follows me on my chronic illness journey; we hope to get a single case agreement with the new insurance company.

Sometimes I get a bit of a panic wondering what it would be like with me surviving an illness that limits me in so many ways, financially, physically, etc. The only thing I can control is my emotions and mentality, so that’s what I’ve been trained to focus on.  What if my parents weren’t there for me to depend on?  Nobody else would care.  My nurse practitioner wrote me a medical note that I could give to the insurance company, and in it it describes me as a very young patient with severe lung disease and one with a “terminal illness.”  It was so weird to read that part.  She had warned me she would use some scary words to make her point across.  But what freaked me out later was the realization that she wouldn’t use it to straight up lie– it was at least true and relevant to me even if I felt like I was managing my day-to-days okay.  I am someone they all are monitoring to see when, not if, my progression starts to decline.  But again, I can’t focus on these thoughts because they don’t contribute positively in any shape or form.

For me to be questioned at work when I park in the handicap spot by a co-worker, these things feel so ridiculously unfair.  Yes, I don’t look sick enough.  But yes, in fact, I do not have a mild disease, but a severe one.  I am just young and able to fool people in the short term run.

To end on a good note though, this woman I’d been following who is just a bit older than me with cystic fibrosis (fighting2breathe) was severely ill, on the hospital bed for months in California.  And she received her second lung transplant and looks like she is on the way to recovering.  I am so happy and relieved, and hope that for all her suffering and strength, she is able to have the life she wants, with her husband and future kids like she hopes to have.  That’s her biggest wish, and yet most people around me take those for granted.

I don’t pray to be successful or have anything given to me:  I want the opportunities to be able to become successful on my terms, and the drive and determination to get there regardless.

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Reminder to be Thankful: Healthcare, Career, and Other Basic Things Most ppl take for Granted

I’ve started my second week of work, and I remember thinking of my last job and how excited I was just to have a job and be healthy enough to go to work everyday.  After a couple months though, the excitement wore off and the work became mundane- I felt restless and uninspired, not to mention the weather got colder and more difficult for me.

I had this thought at the end of last week that it seemed I was nearing the end of my training and picking up most of what I could pick up at this job and place, but I really hoped that wasn’t the case.  Thankfully, I think I still have a lot to learn, and if I do well and still last here 3-6 months later, maybe I’ll get a raise or they’ll consider moving me to another higher position in data.  Ideally, my image of “making it” career-wise would be to climb up the ladder in terms of data analyst, then data scientist, of which the avg annual income is ~$100,000.  Even though money isn’t everything, it would definitely be one less thing to worry about and would make life a little easier.  My hospital stay for just 8 days last year ended up costing ~$50,000… I don’t know how people are supposed to survive and pay that without insurance in America.  Definitely a huge problem.  It’s inhumane not to provide people with the basic ability of maintaining their health and welfare.

I’m glad that compared to certain peak times of my life, these past months I haven’t had to visit doctors an incredible amount- I have to take off once a month so far, and I try really hard to book my appointments for other things after my work ends, which is possible because it’s part-time.  As I grow older, I become more and more aware of spending money practically, and investing in things I need. Really need.  Like work clothes.  What I WANT are a nice new pair of bose headphones and for my mac computer to have sound again, but so far, I am living life fine without either.  Shout out to you Sean if you’re reading this lmao because I use bluetooth on the sleep machine to get sound when I connect it to the laptop 😀

So what I want to be thankful for now, and what I have to keep reminding myself when I start to feel bored or annoyed that I have to go to work, is that it is a blessing to have the ability to have a job and to make it there everyday.  I remember those cold winter months where I had really bad winter blues and was alone and so frustrated that I was just full-time sick, watching everyone else simply have opportunities to hit their goals.  I don’t need anyone to hand anything to me, I just want the opportunity to earn it.  Because now that I am not down with the flu/cold or my lungs are fucking with me and I can manage my current job so far, I feel confident that I have the drive and the ability to learn and make it to where I want to be.  As long as life doesn’t throw more shit at me (which I know it will), I can do it.  And that is one of the biggest leg ups I have over my competition.  I know what it’s like to simply not be able to try.  When you’ve never known what it’s like to have a chance feel like it’s completely robbed from you, you don’t know anything else except to take it for granted.

I know I’m not earning that much right now.  But it’s a step above not having the ability to earn anything at all.  And even if I get fired now, I already picked up so much on the corporate world in one week, and other random technical jumbo I never thought twice about that impact our lives very much, that it’s okay:  I know it wasn’t a waste of time.  Absorbing knowledge is great 😀  I’m starting to migrate towards analyzing real work this week in their many Excel sheets… my biggest wish is that the learning doesn’t stop here and I’m not stuck doing this for weeks on end, or for the rest of my position there.  Give me a chance to prove what I can bring when illness doesn’t prevent me, and I will kick ass.

Making Lemonade out of Lemon

Hella cliche I know.  But I was thinking about how the past UPenn hospital visits have only become increasingly difficult, with more doctors from different departments added on each time.  It definitely took off in the “worse” direction around the time I decided to do the lung transplant evaluation.  I was rambling to my friend about making lemonade out of lemon, even if it’s kinda shitty, just to make it edible enough is good enough for me.

I used to be someone who just kind of enjoyed bubble tea.  But now bubble tea has taken on a whole new level of meaning for me.  It’s the reward I looked forward to after my rough appointments and tests.  It’s forever going to be ingrained as a positive memory I will cherish, grabbing Mr. Wish with my dad or my parents, a ritual you could even say.

So with all the rough memories that are occurring in my life, I am still trying my best to balance it out with each visit ending in lemonade, even if sometimes it’s only barely edible.

Create your own silver lining?  It’s damn hard but I’m trying anyway.


On a slightly separate note, I think I’ve finally reached that point where needles don’t completely send me into a near anxiety attack.  It’s my 20th or something blood test/needle in the last year, and now I kinda just stare at the needle in disdain.  Still a bit nervous, but not nervewracking.  You just don’t know how strong you are until you’re forced to challenge yourself consistently.

Dating with a Chronic Illness

My mom has talked to me about what it’s like to live in another country where English is its primary language but not yours.  There are a lot of struggles that I can only imagine, as I am privileged to grow up understanding two different languages and two different cultures.  There are times where they clash, but it was overall still much easier to absorb for me than for her.  There comes the theme of caring less what other people think, and doing what’s best for yourself.  Even though the situations vary for all of us, the feelings are very similar.  Anxiety or worry about how others perceive us, how they judge us.

It frustrated me that it was frustrating for her, and that she could not seem to overcome those feelings.  More relevant, to become more self accepting of myself so that I have the courage to reach for things I want out of life. Particularly with the process of dating and fearing the reception and outcome.  It is really difficult.  But I really have to work on becoming okay with who I am, chronic illness included.  It doesn’t define me, but it definitely affects me in so many ways.

 

Losing My Rhythm

Yeah… trying to stay on the wagon and the momentum but instead of keeping my eye on the ball, the eye is kind of wandering and looking elsewhere, the prize is looking a little out of focus.

One day I can wake up feeling relatively upbeat and feeling that drive, but the next I’ll wake up feeling the physical aches and translating to mental energy loss as well.  I start to second guess myself and wonder if I’m worth ever being hired, and if I were, if I was ever meant to be able to hold onto a solid career and maintain it without sacrificing my health and ending up in the hospital again.

I scroll through my private Instagram, and to watch the journey of a woman close to my age go through the whole lung transplant process, and to slowly die, waiting for another chance to breathe and live, I am getting secondhand agony and secondhand anxiety:  is this the predetermined path for me as well?  The answer is yes, and yet I want to look away.  Because if I stare at it too long, then I will lose all resilience in the other goals I want to accomplish in the meantime.

I’m reading this really enlightening book called “Sapiens:  A Brief History of Humankind” and it’s a very thoughtful, well-rounded reflection that is bursting with info from evolution, biology, history, to religion and revolutions of the human species.  I have to say, it held a lot of questions about Christianity and all the strange potholes and contradictions that have always made me a bit uneasy.  But to imagine that we are truly alone in our struggles and are left to suffer mindlessly is also pretty depressing.

I feel lately like I am doing so much yet nothing at all.  Accomplishing nothing except making it to the next day relatively healthy, and trying to build at doing normal productive things like exercising, spending time with family, reading, learning, and hanging out with friends if the weather and my body allows it.  I sometimes feel proud of myself, but then I’ll look at a friend or someone else’s life, and it makes me so overwhelmed wishing so hard that I could do better, and that it is never enough.  To have a job to go to everyday, to travel with friends, to have someone hire me and believe in me and validate that I’m worth it despite all my problems.  I want to have a moment where I can look at myself like, yeah, I made it.  I did this.

What I keep reminding myself is that it is already a huge accomplishment that in comparison to my taking steroids 5 times last winter, I did not get sick at all this winter. Of course, it was at the expense of staying home most of the time to minimize risks and exposures, but it is still a good thing to stay safe.  I have spent my time wisely lately and in dragging my ass to the gym and watching what I eat.  I am almost at my target weight of 105 lbs, and I have been eating cleaner- mostly filled with oatmeal, boiled egg, chicken, and lots of fruits and veggies.

If I cannot obtain my career dream at this point in time, I will continue chasing my other, which is to push my body to the fittest it can be.  I want abs of steel, stronger thighs to walk with, my bicep and tricep lines to show when I flex, a butt, and a better posture with chest presses.  I was walking yesterday and realized that I was much more aware of the muscles in my legs, and it encouraged me to continue being persistent.  To feel like I got hit by a truck every time will be worth it in the long run when I can look at myself in the mirror and be proud of what I’ve built.  This is one of the days I can work towards in my control, as long as I don’t get sick and I keep up with what I’m doing without getting stagnant again.

My body is kind of what I deem a bad charger- it needs a lot more rest and charges at such a slow pace that while other ones are hitting 100% in 1 hour, mine is hitting 19% by then if I’m lucky.  So when it keeps hitting close to 5% and I’m getting warning signs, I must force myself to rest so I can get back up a few percents.  This has taught me to be much more efficient in the 19% I have- and while I’m at my version of full capacity, what am I going to spend that energy on?