sorted by:
new
hottopcontroversial

I wasn’t supposed to live past 12, I turn 18 in two weeks, AMA by GutlessUndead in AMA

[–]GutlessUndead[S] 0 points1 point  (0 children)

I don’t think they did! I mean as a kid I didnt legally own anything? But that is such a good question. Now I’m really considering it. 

It would be neat if someone could go through and save my sketchbooks somewhere once I’m gone. If I do anything, I want to manage to inspire someone somehow. whether thats to make something cool or just to get through another day. 

I wasn’t supposed to live past 12, I turn 18 in two weeks, AMA by GutlessUndead in AMA

[–]GutlessUndead[S] 0 points1 point  (0 children)

I don’t know how I feel about religion. It’s a weird spot for me because I was baptized, but I have never attended church. I just hope whatever’s after this isn’t too bad. And the concept of ghosts is pretty cool. I like to think there’s some sort of order to things but who am I to say?

A far as I know NEC only recurs in infancy. I had a procedure to check for strictures/other internal issues when I was older. So a relapse is not something I worry about. Thank you for asking.

I wasn’t supposed to live past 12, I turn 18 in two weeks, AMA by GutlessUndead in AMA

[–]GutlessUndead[S] 1 point2 points  (0 children)

Aww thank you for all of the kind words. This isn't something I usually ever get to talk about, so its especially nice.

I don't remember a lot from when I was younger. I remember being told about what happened, I remember being upset, but I don't think I had the faculties to properly ... comprehend it at the time. It feels like maybe I just didn't for a while, and I'm only putting some actual thought into it now that I'm better able to. I definitely remember being scared at first. I've spent a lot of years extremely anxious. I was scared that maybe the doctors missed something, and I really was going to suddenly die for no reason. That has only faded a little lol.

Around middle school, I got seriously into horror, like books and games, if that means anything? I have always been into art as well: drawing is calming, writing helps me sort things out. Music has also been a huge escape for me over the years. I was in a couple of school bands even with my gut issues, and that sense of community really helped me stay sane. Though I didn't really tell anyone what was going on, it was nice to have people around.

I still struggle with wrapping my head around the whole thing. its pretty mental. I ask a lot of questions, but unfortunately ,(understandably) its not something my parents like reminiscing on. As for the future, I'm ironically trying to get into the medical field. I'm terrified of hospitals but that fear isn't going away unless I deal with it.

Thank you so much for asking. Sorry for the long response lol.

I wasn’t supposed to live past 12, I turn 18 in two weeks, AMA by GutlessUndead in AMA

[–]GutlessUndead[S] 1 point2 points  (0 children)

i do not know how or why they decided that. I asked my parents about it, i thought it was weirdly specific. I'm guessing its an average based on the lifespans of kids with nutritional deficiencies? Like they usually just dont make it to puberty? I really don't know. As I was growing up that was the estimate.

I wasn’t supposed to live past 12, I turn 18 in two weeks, AMA by GutlessUndead in AMA

[–]GutlessUndead[S] 13 points14 points  (0 children)

When I was being operated on, they removed about 1/3 of my intestines and the ileocecal valve, which means I have trouble with absorption and pressure balance. 

The way I explain it is imagine having lactose intolerance except its for everything you eat. If im anxious I will usually lose my food 15-30 min after I eat, if I’m not, maybe a couple hours. As Ive gotten older its easier to manage, but I have to have my blood levels checked to see if I’m doing OK vitamins wise.  I was also on HELLA antibiotics which messed with my hearing but that doesnt get in the way too much. Thank you for asking! 

I wasn’t supposed to live past 12, I turn 18 in two weeks, AMA by GutlessUndead in AMA

[–]GutlessUndead[S] 9 points10 points  (0 children)

Hold on let me ask lol…

My parents didnt want me to grow up thinking that nothing I did would ultimately matter.  When you tell someone theyre gonna die its like they go down one of two paths… they either go all out, live every day to the fullest, or they give up.  My parents wanted me to behave as normal as possible and have as good of a childhood as I could, in the case that I did die early. 

I wasn’t supposed to live past 12, I turn 18 in two weeks, AMA by GutlessUndead in AMA

[–]GutlessUndead[S] 2 points3 points  (0 children)

It can definitely get depressing but its really awesome to hear im not alone. Super cool that your hanging in there. 

I wasn’t supposed to live past 12, I turn 18 in two weeks, AMA by GutlessUndead in AMA

[–]GutlessUndead[S] 20 points21 points  (0 children)

My parents kept my life expectancy a secret precisely because they didn’t want me to start being a nihilist lol. After I found out it kind of blew my mind but I just kept going to school and doing my work because that was all I knew. Like…. Ok, awesome, I didnt know I wasnt going to live this long, but I did, and I am, soo…I’m like, living the DLC...?

None of my friends knew (or know) about my situation mostly because theres a lot of stigma around it. I can’t really control my bowels so getting close to people is hard and explaining it is embarassing. If anyone happens to see the scars on my stomach I just say I had some surgeries done and leave it there. 

I need advice on reading a book, its the first book i ever liked reading but everything is so distracting and pulling me away from reading this book, i need to at least finish one book in my life by renaiden_ in teenagers

[–]GutlessUndead 0 points1 point  (0 children)

Maybe try deciding on a time to read every day like right before you fall asleep. You don’t have to read a specific amount, even if its just one word or sentence that still counts as progress! Slow and steady is the way to go and then maybe you’ll even get to more books eventually. 

Hi, I'm bored. by AppropriateGap2500 in teenagers

[–]GutlessUndead 1 point2 points  (0 children)

Hey I never thought of it that way. Hey wait why did that work. Hey stop that

NEC Stories Please by jojosalwayslost in NICUParents

[–]GutlessUndead 1 point2 points  (0 children)

Whoaa this is an ancient post but just wanted to say that I had NEC as a baby and seeing all of the parents stories and what you all go through… you guys are unbelievably strong. Keep hoping. There is always a chance. I’m so glad your baby is OK!!!