Health-LiveIamA IamA chronically ill young adult (19 years old) with TOF w/ pulmonary atresia, (yes, what Jimmy Kimmel's baby Billy has,) and several other disabilities! I've been in and out of the hospital since birth and had nine major surgeries,
May 18th 2017 by Pinkie_Fry • 16 Questions • 376 Points
My short bio: including 3 open heart. Ask me anything!
EDIT: deleted the original thread due to mistakes I made, sorry! I figured people might be curious about what growing up being constantly hospitalized would be like. Especially after completing my first year of college, I realized this isn't really an experience people understand or are are comfortable with, so I figured I might as well shine a light on it! Note: I don't know a ton about my diseases from a medical perspective, more just what it feels like and what it is like spending so much of my childhood in a hospital.
My Proof: a picture of me showing off my heart surgery scar, with one of my canes: http://68.media.tumblr.com/fe077bb8f418f8637f8133a4f5e3be68/tumblr_oq4gx7uBGm1s5ytqno1_500.jpg A picture of me two years ago, age 17, recovering from my most recent open heart, (probably about a week after surgery):http://68.media.tumblr.com/bb0900ec129dd1885d980ffe9919ebbd/tumblr_nlr5fwTLsP1s5ytqno1_250.jpg picture of me with a nebulizer treatment as a toddler:http://68.media.tumblr.com/8107d7b43b5af979d4c33002f7e3a907/tumblr_nmzff9afl51s5ytqno1_250.jpg
So you have a bucket list? What have you checked off so far? What's next?
Okay so I've met a few celebrities I've always wanted to meet-- a member of team Starkid and the Nostalgia Critic crew! Heck, Doug even complemented me on my cosplay and asked for MY picture and I helped convince Tamara to do the Tamara's Never Seen on Heathers. (I'm from Chicago.) I've done average stuff like going to Disney and Universal, (never got a Make-A-Wish though,) and I've gone on three amazing trips-- London, Kenya and Alaska, and I'm going to Italy this summer with my family. I also got into School of the Art Institute of Chicago, and I'm learning how to animate! (I took one course this semester and am taking one fall of 2017, and I have a pitch book for a cartoon getting started.) I'd like to go to France some day, maybe, and I'd love to meet Mat Groening, Alex Hirsh and Lauren Faust. Also on a more mundane note I keep meaning to watch Star Trek TOG and TNG. I also hope to be a comic book artist or have my own animated show one day. I know it's a bit of a boring bucket list but I've had enough near-death experiences that I'm not looking to skydive or anything anytime soon. Also I got a dog this year which has been a childhood dream forever-- she's a rescue named Dodger and I love her very much
One More Edit: I can't believe I forgot to mention this but when I met the Channel Awesome Crew, I also had a really in depth discussion with Jim about prop building and it was honestly incredible. I did stage crew and had made an Audrey II model for my cosplay and he complemented it and we talked about technique, it was really great.
Does it make you angry when people complain about their little problems that are petty compared to yours?
yes and no. on one hand it made me a lot more receptive to certain people who seem to have "small" problems-- on days i don't have my cane or my scar isn't showing, i seem able-bodied, so i kinda learned to never doubt anyone saying they were disabled or in pain because i understood that a lot of people who are don't SEEM like they are. at the same time i do roll my eyes a bit when people miss weeks of school for a cold when i would have to go with walking pneumonias and kidney stones. i get that everyone's pain tolerance is different, but i always kinda went "wow i wish that i was healthy enough that i could use sick days for stuff like that."
so how much tax payer money has been spent on you at this point?
... Do you want me to send you a check or something? There's no way of knowing, honestly, my family is lucky enough that we've been able to pay off my bills and I have good insurance. I'm sure none of your money specifically has ever gone to me, so you can rest easy knowing that you've never helped save my life. Hope that takes a load off your chest, pal.
Sorry, I know this seems rude, but this is really confrontational and really rubbed me the wrong way.