- Low-Value Care: as opposed to more effective or less expensive alternatives, “overtreatment”
- Lack of Price Transparency – seems arbitrary; most insurances apparently base prices on a “cabal”, or private small group which determines price values of medical procedures and care
- Administrative Complexity =overspending on administrative costs
- Mandatory Budget includes Social Security and Medicare, which is increasing deficit; however, it is political suicide to suggest cutting spending for the disabled (grandma, Veteran, etc). One solution is to lower overall healthcare costs, which Obamacare (ACA) addressed by including coverage for preventive costs, catching illnesses and diseases before they become ER visits or cancer treatments, aka more expensive costs.
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.
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.
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.
I’ve been joking about having a quarter life crisis since I was 20, but I guess 25 is the “official” quarter-life crisis legitimacy age, assuming 100 is the year we would live to on average. I just Googled it, the average U.S. age lives to a lifespan of 79 years old, apparently a whole four years longer than it was about 30 years ago.
Weather and Season:
For some reason, it seems like fall condensed in the past week- the landscapes exploded into colors of orange, yellow, and red, soon swept to dead leaves in the wind, and finally left the trees in our yard 90% barren. We went from 70 degrees two weeks ago to 40s this week, with bouts of rainfall scattered throughout the days.
On Friday, it was not a fun day. I was not feeling it, with the dark skies and rain, and I was tired from driving down to Princeton for a UX/UI lecture the night before (more on that later). The new list I was working on was also more complex and annoying – there were more factors to consider and change in the system, and none of it was as efficient and straightforward as it should be. I have a vague idea of the role I took on at this job, but I feel like more than anything, I was hired to research and figure out all the arbitrary conditions in this process without having been properly trained. Someone from another department messaged me, asking me to look into something I had done two months ago to an account. For comparison, I work through about 2000-3000 accounts per week on average, and when someone messages me on something, I get anxiety on having to understand and defend myself clearly and promptly. I needed to understand more of the background and relationship of what other departments do and how the system functions, in order to be able to defend myself on what I had apparently done and what they were looking at. My quick research led me to believe that I had made an error, and an email was immediately sent out informing others that I had made a mistake. After help from my co-worker, I realized that I had not been wrong in the update I made, and I therefore attempted to explain to my boss why the change had been made. It’s just a crappy feeling, not being sure if you did make the mistake stupidly, or it was some operational error you didn’t even have clarity on. I had apologized many times so far, but out the handful times I had been messaged on my errors, I really believe most of them were due to some of the natural margin of errors that happen when you do a lot of manual work in large amounts of data, and also due to some result I was given that nobody had a concrete idea on how to handle. There was only one time that it was 100% a huge stupid mistake I clearly made. None of my bosses have yelled at me or anything, but it’s this pressure I feel where I want to work hard and I really dislike having anyone accuse me of mistakes. I’m still having doubts about my value and my worth. I’ve learned that it’s important not to apologize, and to always do your best to find out what happened before believing it when someone tells you you made an error.
- The UX/UI event: I had heard about this since the last meetup I attended back in the summer, and didn’t think much about it since. But then I got an email notification and realized that the topic was one I was quite interested in, which includes user accessibility, something that involves improvement for disabled people as well. The user experience should prioritize that demographic as well, so I definitely enjoyed the lecture, which was given by Elizabeth Churchill, the head of the UX/UI team at Google. It was the first time I’d been in this building, which was the one right in front of the Princeton fountain. The auditorium I was in looked similar to the one broadcasted at the UN, and I immediately sat next to a student who had a #builtbygirls sticker on her laptop. I talked to her, and realized that there were obviously many Princeton students as well attending, and it was hard not to feel a bit intimidated since I was suddenly aware of the high amount of intellect in this room. I enjoyed how the speaker broke down the way they researched things at Google, and I definitely agree that a smooth interface is all the difference in whether someone wants to download an app.
- I’ve been researching more online about what courses and topics I could learn more about and be more exposed to. I also have been reading up a lot on job requirements, particularly those in my town. I feel more certain now on the skills I want to target acquiring at my current job, especially those that are transferable. I need to remind myself when I feel anxious and insecure at my job, that it takes time to pick up on all the nuances of responsibilities, and that even if I lose this job, it’s not the end of the world, and I’m sure I am better off now than I was a year ago regardless. I can only try my best.
Health: I shuffled my Tuesday work schedule two hours later to stop by the SSI office with my dad to figure out what’s going on with the status of my benefits. It always gives me anxiety to go, because one time we had this really mean Indian lady who treated me like a criminal who was taking advantage and lying to her. I put aside two hours for the trip, but thankfully, we talked to one of the front desk ladies and resolved our questions in about 20ish minutes, with probably a 20 minute wait. I left with a pamphlet of information and more clear instructions on how to report my wages, and then realized I could head into work at 11am instead of 12pm. I also ended up going to a deli to talk more with a new guy at work, he’s an interesting character. I also have to figure out some insurance claims I made, and sometimes when I think too hard into things it can be overwhelming. But I’m okay for now.
The good thing is I’ve done so much research, and have a list of notes on what to further look into and learn about now. At least I have a sense of direction on what to gain more experience on. Bloomberg Business magazine is also really informative on world news and trends, so most of my weekend was spent between watching The Americans and reading and researching.
So I always feel like I’m not doing enough. For myself, for other people. It’s a lot of pressure. I’m consciously making an effort to think of all the things that I AM doing though, and there are a lot of things actually that I’ve worked towards and improved on despite all the other regular shit going on.
- Crisis Textline Volunteer – in the process of being trained. I already agree with a lot of the things I’m being taught in the guidelines and videos, so that’s a good sign. I worry that I won’t be able to handle it emotionally and will feel like a failure. But I still think it’s a good challenge to try. Text HOME to 741741 if you’re looking for support.
- Starting a new job as a Data Entry Specialist this upcoming week- again, feeling like I might be a failure if I can’t hold onto this job or feel sick and end up quitting/getting let go. But that’s another thing I’m working towards for summer plans, and I hope I at least learn something.
- Dating – Yeah, I had an anxiety attack last night thinking that I’ll never find somebody, but I did go on a few dates and it’s probably hit the end of the road in that department for now, but whatever I tried lol yay me.
- Seeing friends – I’ve definitely made a huge effort to stay present and updated in my friends’ lives, and I am pretty content with my social life at the moment, which is a rare thing.
- Body – I’ve hit my weight goals and also hit the gym 9 times the past month, which was my original goal all year long and I wasn’t able to hit that goal until recently. I do see mild tricep/bicep lines, but legs and butt still feel like sticks. Regardless, I’ve also taken up Sunday yoga again and I’m happy I forced myself to do that because it does help more or less. My parents also go on evening walks and my dad goes on a few runs each week, so I’m also proud of them!
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?
I think as a kid, I always had major health eating issues, in that I couldn’t stomach much food. I felt nauseous quite often, and my mom had many a fit and headache trying to get me to finish a plate of fried rice.
As I got older, I started experimenting with cooking and found out that being in control of the food you consume and want to consume is very empowering and satisfying. Knowledge is power, and creating meals, a constant in anyone’s life, is all the more important.
Especially now that I am reaching my mid 20’s and my parents are getting older, they ask me to cook food that is healthy. Of course, it has to be delicious as well for us to not have heavy wandering eyes towards the cookie aisle. No doubt, fried foods or anything with a lot of butter or fat is an easy route to delicious bites, but what is more challenging is championing a good mix of spices to bring out the natural flavors in food, especially vegetables.
My dad always joked that “if it’s healthy, it doesn’t taste good”, and I want to make it a personal goal to do my research and make sure that I produce meals that are healthy but also tastes good. I’ve had some hits and misses, but the hits just prove that it’s totally possible! It doesn’t mean completely cutting out anything with butter or sugar, but adjusting the recipe so that it’s still tasty, but doesn’t sacrifice the health meter.
I’ve had success in creating a few of my own recipes as well!
One-Pan Roasted Salmon and Vegetables
1 fillet of salmon
Vegetables- bell peppers, tomatoes, asparagus, kale, spinach
Coat all in olive oil (maybe 1 Tbsp)
Spices: salt/pepper or soy sauce, cumin, paprika, chile powder, a little allspice
Hot chili flakes (optional)
Fresh vegetables finishing touches (optional)- cucumber, avocado
Finishing touches of lemon/lime juice. If not available, use a Tbsp of rice vinegar instead with the olive oil.
15-20 minutes in mini oven around 350-375 degrees.
I’ve also started making Overnight Oatmeal.
1 banana, sliced (and or other fruits like berries)
5 generous spoonfuls of old fashioned oatmeal
1 cup milk, or a bit over ingredients
2 dollops greek yogurt
1 Tbsp flax seed / chia seed
1 tsp vanilla extract
a little honey or sugar (optional)
This is my new hit my parents love: Asparagus with cherry tomatoes and eggs. I also stir-fried spinach, swiss chard, and peppers in rice vinegar, soy sauce, and honey, and piled that in between the asparagus. One of the eggs broke, but the sauce still tasted great with a little smoked paprika. Have fun with it!
Next, I’m going to try Oatmeal Blueberry Yogurt Pancakes:
as well as Oatmeal Dark Chocolate Pumpkin Cookies!!