Hey all! My name is Jason Carpenito! and I'm the founder/leader of a Facebook group based gaming community called NoTag Gamers (NTG)!
I'm here at the moment because we over at NTG.LoL (League division) are trying to get a fund raiser started for the Cystic Fibrosis Foundation via our live stream @ www.twitch.tv/treble557
(TLDR/pictures @ bot)
(Also if you are a Pro Player / Rioter / Youtuber / Anyone Famous and would like to help out by coming on the stream for a couple of hours please post down bellow.)
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Vid Link
http://www.youtube.com/watch?v=mCS_N...ature=youtu.be
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Why am I doing this?
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Cystic Fibrosis is a nasty terminal illness, which I've had my entire life, that slowly destroys the lungs of those who suffer from it.
Due to this, I'm going to be doing everything I can from the 21st to the 3rd to help raise money for the CF foundation to help fund research for treatments/medications/helpful programs for the disorder, in hopes of one day curing it all together.
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What is the CF Foundation?
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The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. We fund more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support.
We are a non-profit donor-supported organization dedicated to attacking cystic fibrosis from every angle. Our focus is to support the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure.
The Foundation's drug development model has been recognized by Harvard Business School and by publications such as Forbes, The New Yorker, and Bloomberg Business week.
Based in Bethesda, Md., the Foundation funds and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease.
The Cystic Fibrosis Foundation is one of the most efficient organizations of its kind and is an accredited charity of the Better Business Bureau's Wise Giving Alliance.
For more information on the CF foundation, please go to http://www.cff.org/aboutCFFoundation/
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What is Cystic Fibrosis?
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I was diagnosed with CF at birth, and since then have led a life unlike any other that I've come to know so far.
CF is a fairly nasty genetic disorder that at its core causes the mucous in your body to be thicker than a normal persons. Now, I realize a lot of you are probably wonder why that would matter, or have any sort of negative impact on a person, and you'd be right to wonder that, as it doesn't sound like much when described that way.
However, the body is built on a layer of systems, working in an uneasy balance within each other. When one stops working properly, the rest can quickly follow.
For starters, the thickened mucous of the body winds up making it so your bodies enzymes can't reach the food you eat in your stomach, resulting in you not breaking down or absorbing anything.
This leads to some serious pain and malnourishment issues, which can vary in severity from person to person. I have it pretty bad sadly (27 years old, and I can't break 98 pounds still), so I'm forced to take a number of pills (big ass ones too) every single time I put food or something hard to break down into my stomach, in almost any quantity.
Now, the malnourishment is in check, however the fact that it's present causes other issues due to your body not having the vitamins it needs to upkeep itself. So you wind up with bone issues, liver issues, energy issues, vascular issues, healing issues, surgical risks, and a weakened immune system.
These are just some of the issues people with CF suffer from, and not even the ones that make this condition a terminal one.
The part that makes it terminal is the lungs.
Due to the thickened mucous, the bacteria/fungus that you normally inhale and exhale every day, like the asprigillus in the humid and rainy weather, winds up getting trapped within the lungs of a CF'er, as opposed to pushed out or killed off.
Once trapped, the bacteria/fungus will begin to colonize, and eat away at the lungs and resources of the body, until the lungs eventually give up and die.
Sounds scary, right?
Welp, currently many treatments and medications do exist to treat these infections, and on rare occasions they can even remove the infection from the body.
However, even these treatments aren't a permanent solution, as the bugs never truly 100% die. This means that what remains of them learns immunities to the forms of treatments you take in over time, and eventually you wind up left without any medications that will work.
Normally, this is where our life spans get cut very short, and we require lung transplants (which are less of a salvation then one would think).
So that, in a nutshell, is what CF is and does to the body.
If anyone wants to know more about it, and how it effects people like myself on a day to day basis, there's lots of information out there that can be found on YouTube (by searching for Cystic Fibrosis), at www.cff.org , or even on places like the Cystic Fibrosis forums over at http://forum.cysticfibrosis.com .
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A little bit about myself
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Like I said above, My name is Jason Carpenito, and I've suffered from Cystic Fibrosis my whole life.
As a child, I never knew I was really different from everyone else. The most I had to do differently was eat a spoon full of nasty tasting little yellow pellets that were sprinkles on jelly.
This was apparently my parents clever method of getting me to take my pills with my meals at a young age, lol.
However, being young, I wasn't always so willing to spoon down those nasty things, so I'd fight it a lot, and then eat anyways, and later that night wind up in the hospital with a tube up my rear as they pumped my insides clean, lol.
Talk about being punished, eh? Most kids have to go to their rooms, or now a day's lose their ipads for a little bit when they don't listen to their parents. With me though my parents didn't even have to try to punish me! My stomach did all the work for them, lmao.
So I learned pretty quickly that taking my enzymes was a must, and never skipped a beat on them again after I realized they were why I had to keep going to the ER and getting enemas so often. :/
Even in school I made sure to take them before every lunch, which wound up cutting my lunches pretty short due to how far the nurses office was from the lunch rooms. and god forbid the school let me carry my enzymes with me and just go. I could.. I don't know, make a bomb with them or something?
I don't know why they had that rule back then (and still do to this day apparently), but it definitely made life a little bit more annoying every day.
School had a tendency to do that though, even at a young age for me. It made life feel a lot worse than it had to be as a child due to all the time I spent absent.
I was always sick for one reason or another. Either my stomach was acting up, I was having an allergic reaction to some medication, or I was going to doctors/being put in the hospital for 2 weeks at a time.
So I wasn't in school all that much, and that got me picked on quite a bit. Those days coming back from being away from weeks on end were always the most awkward ones. Especially when no one there really liked you to begin with.
Believe it or not, the hospital stays were actually some of the most relaxing times I had as a child!
Well.. outside of all the needles and fairly terrifying procedures I went through, lol. Stuff that today, I'm so used to that I can just kind of shrug off regardless of the pain, but as a child, I'd go into kicking and screaming, lol.
I spent a lot of time alone in hospital rooms, mostly on me and my brothers birthdays, able to just sit and relax, while medications were pumped into me via a picc line (tube that goes from your arm to your heart via blood veins).
The meds made me feel pretty awesome, so I would just wind up playing video games, watching TV, roaming the giant skyscraper hospital I was in (Mass General in Boston MA) and chugging coffee all night long, lmao.
Having that kind of independence as a child was pretty baller honestly, even though it came at a cost. It was both scary and fun at the same time, and it caused me to grow up a bit faster then I realized.
Fast forward a bit, about 8 years. My stomach issues had become less of an issue then before, and were pretty under control. However, my lungs started becoming a problem.
You see, you aren't hit with ALL the issues of CF all at once. Sometimes they happen when you're older, sometimes younger, sometimes right when you're born. For me though, I was fortunate enough, without even realizing I was, to have my lung issues not become a big thing until I was much older.
At this point I was always done with school, and not by graduating. I was sick and out so often that I was told I should drop out by the school system in Arizona, where we had moved when I was about 14.
So that's basically what happened.
After that, I wound up trying to work some jobs, and found my condition to really be getting in the way. So much so that I had to stop, and wound up on disability.
Being on disability, and not bound to anything but my treatments and medications, I wound up traveling a lot. I had met people on the internet.. girls.. (lawl), which wound up taking me to a lot of places, on a lot of adventures.
Ones that may not have worked out in the long run, but taught me very important life lessons, and helped me grow even further as a person.
I wound up back at my dad's after all my adventures were done, where my parents had started going through a divorce. My brother was a mess over it, and my dad was badly hurt. Despite all that though, it still felt like home to me, and I was just happy to be there again,
Since then, allots happened. I moved around a lot, and even wound up couch surfing for a while due to family related stuffs.
During that time, I've watched as no matter what I did to take care of myself.. be it special dieting, taking supplements, lifting, running, taking medications, etc etc, I just keep getting sicker and sicker.
Day by day I find myself having new, crippling issues, just popping up out of the blue, and being able to do less and less physical activities without hurting myself.
Things like Bruises, pulled muscles, damaged ribs, dislocating joints, coughing blood, exhaustion, and throwing up, are all just parts of my normal daily life for me now. :/
So yeah, life's rough, as always.
Despite all that though life isn't so bad atm.
I have an amazing friend who takes care of me, a rapidly growing gaming community of amazing people to do stuff with every night, and an amazing game like League of Legends to spend my time on and hopefully one day go pro in!
All those things combined make being home bound aloooot less difficult to deal with then one would imagine. :>
So that's a little bit about my life and my story. About as much as I can type on here without making it too long for anyone to handle reading, in this already super long post.
If anyone wants to know more about my life and what I've dealt with growing up and such, I'd be glad to tell more while streaming though. :>
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Senior Member
