#CFER

[faebriel]

brrrr rainduo hunger games au

mad shoutouts to bee, beans, daisy and cherry for hopping on the rainduo hunger games bandwagon kdhkdjd

okay so nonnie i have a bit of hunger games knowledge (have watched the first two movies with some pals in the last month, various clips on youtube, etc) so i decided to take this one to my friends in clout farm to bounce some ideas around. niki and wil as tributes? niki as a tribute and wil as an estranged old friend who won the games five years ago and then was swallowed up by the capitol? two coworkers in the world's worst subminimum wage job? then bee comes in with the sledgehammer

for everyone else who also thought oh god i need to google that: avoxes are rebels, traitors or deserters who had their tongues cut out as punishment, and are forced into servitude by the capitol.

alright so. wilbur and niki are two kids in district 12 in the midst of a potential regime change - and they're kids, around ten and fourteen each. to-be-president schlatt is shoving around president dream and it almost seems like this might be a window for change, something wilbur is so passionate about

and then that wrong person overhears, and wilbur is gone.

niki assumes that wilbur is dead. (and tries not to think about how he got taken, because of nothing more than sheer bad luck, and she didn't.) it's awful, but seven years pass and she does her best to cope with it. and then her name is called at the reaping, when she is seventeen years old.

niki has absolutely zero intention of playing along with the games - she thinks they're horrible, just another way for the capitol to terrorise the people of the districts, even if she's learned by now the consequences of actually saying that out loud. she meets her mentor, jack - a year younger than she is, district 12's only remaining victor. he came out of the coal pits at thirteen, with just enough charisma and confidence to win over the sponsors and just enough grit to outlive every other tribute in his games, despite his age.

unfortunately for jack, niki is stubborn as hell when she makes her choices, and she's chosen not to play. fuck the capitol - fuck acting as their entertainment while they burn her entire fucking world down. fuck smiling how they want her to and acting sweet. why should she? she should she, when they've ripped her away from everything she had to lose? niki can hold her own, but not like this - and if she is going to go to her death, she refuses to act pretty about it.

and then she encounters wilbur.

it's one of the dinners for the tributes - one of the early ones, right after they're paired off with their stylists (niki doesn't entirely know what to make of hbomb, who asks her what colour hair dye she'd prefer in one breath and then lays out the most cynical, how-to-get-ahead guide to the games in the second, and then exalts the benefits of a kitty ear motif in the third) but before the interviews and grading. they're eating the fanciest food niki has seen in what is probably her entire life, although it tastes like nothing more than ash in her mouth, and pouring the tributes and their mentors glasses of expensive wine - never mind that almost all the tributes are underage, because when else will they get the chance to drink, hey? niki is still silently fuming, pushing her food around her plate and refusing the sixth damn offer to refill her wine glass and she finally looks up and behind the mask he's wearing, behind the unrecognisable silence, behind seven years of thinking one of her best friends had been horribly killed (and being entirely unable to process that fact) - she sees wilbur.

she immediately asks, wilbur? - not that he responds, and now hbomb and jack are giving her weird looks as hbomb informs her it's just an avox and jack goes oh, yeah, they don't have them in the districts, but -

none of their words matter, because half of niki is solidly trapped in this space between reality and dreams and her worst nightmare - she's only able to pull her shit together once jack has dragged them all back to the district 12 tribute spaces, and gives her the whole spiel about what an avox is, and by extension, what happened to wilbur.

niki is horrified. to think she mourned for all those years, and wilbur was alive - not just alive, but mutilated and tortured at the hands of the capitol. niki didn't think she could become more furious, more enraged with them. she was wrong.

the problem now, then - if niki wants to help wilbur, actually help him, she has to play. she has to win.

(and yes, she does set the forest on fire. she has to win, after all, doesn't she?)

this post is getting so so long so i am putting some more miscellaneous thoughts about The World and more details about niki's games under the cut ⚔️

okay so dream WAS president but was overthrown by schlatt in a "peaceful transfer of power". this was around when niki and wil were 10/14 each - and naturally uprising resulted in a peacekeeper crackdown in the districts, leading to wilbur's capture and arrest :(

2. haven't really nailed down other tributes in niki's reaping (i'm already handwaving the guy from district 12. he doesn't exist to me he is stock image steve) besides uhh ranboo who niki makes brief friends/allies with and then dies horribly. i was thinking aimsey and guqqie because from what i've seen of their content they love a tragedy? but yeah idk

3. sam is the gamemaker for this arena! he was a former victor and has decided to use this knowledge in the worst way possible.

quackity is Also a gamemaker (young upstart with no experience yet in the arena or out of it) and they have terrible workplace drama. is he hooking up with the president? i will not say yea or nay.

4. rest easy in the knowledge that, as a servant to the capitol, wilbur got to see on live television the moment niki was reaped :']

5. niki does, in fact, win the games - by the skin of her teeth. while she is so full of fury at the capitol, i feel like she'd Actually kill like, one career and then feel Extremely ill about it. unfortunately, she has too much on the line to lose. this isn't just about surviving, or going home - she needs to get herself and wilbur home in one piece. she Cannot Afford To Fail.

she ends up winning by setting the arena on fire with use of a match donated by jack and some sponsors he managed to twist the arm of, plus probably some clever digging around in the arena itself to find something flammable (maybe some kind of fuel to power the arena itself?) this fire ends up killing off the remaining few tributes at that point - at least one in front of niki herself - and damages the arena too. niki, already injured before the fire started and now barely clinging onto life past her burns, doesn't even hear the sound of the cannon shots as her victory is announced - she only realises that she's won once the hovercraft descends, perfect steel against a fiery, smoke-filled artificial sky.

she can't really stand the sight of flames after that. unfortunately, fire becomes her new branding.

6. district 13 Is a thing. Eventually. can't overlook niki's beloved anarchist friends :3c

and finally:

[nonbinaryphantom]

no one gets jazz as a big sister with a character like that includes being a big sister in fact being a big part of her character while also being not catered to danny’s needs does that make sense

[vonlipvig]

Fun fact about me playing Not For Broadcast: I have been constantly playing with a small voice in the back of my head trying to work out why Jeremy’s voice sounds so much like my own. I’m sitting there being like: Did we grow up in the same area? Do we share a speech pattern? Is it just a similar energy or tone??? I am literally deaf, how did I notice this and why can’t I notice it further so I know what it is!??

Anyway, the CF trust have a bunch of articles about people with CF who are in work. So naturally I was reading through the creative adjacent ones so I can compare myself unfavourably to them support the careers of my fellow CFers. And wait a second isn’t that…

Anyway it turns out that’s absolutely what it was, and apparently my profoundly deaf ears can ID someone as having the same respiratory condition as me by voice alone. (Also I know how much you love this game and I thought you might find it interesting because of that.)

Oh wow, that's amazing, how cool! I had no idea, but I love that your shared experience made you able to tell. Paul does a hell of an incredible job in NFB, what an absolute icon.

Thank you so much for sharing!

[jackhues]

my fav comms moments from this game in no particular order (phillies vs. mets - london series):

as someone who is not biased towards either team

they wished the net was positioned differently so maybe they could catch a foul ball (their box in london is much lower than the other ballparks)

having a whole conversation with the mets cf and him being mic'd up while screaming for the ball

and that one announcer who was just praising the cfer while they were interviewing him mic'd up

bryce harper's soccer celly after hitting a hr and the comms bringing it up multiple times

plotting how to get bryce harper to hit the cycle and calling it a 'london cycle' (it didn't happen)

going off topic and talking about whoever the camera would show in the crowd

saying 'across the pond' as they referred to playing in london. at least once/twice an inning

going off topic and talking about the dirt. saying it came from america

laughing at the mascot/costumes with a giant head (???) race - the last few seconds were televised before the bottom of the seventh

feeling bad for the mets pitcher when he was taken out of the fourth

when the top of the fourth finally finished and a player who's name i can't remember was the third out: "he was two of the three outs. they went through the order, and he accounted for two of the three outs"

pronouncing chelsea as kelsey, and the other guy correcting him immediately

getting a fish and chips delivery in the bottom of the 7th by the phillies mascot and absolutely losing their minds (probably one of my favourite parts)

one of the guys saying his fav part was being visited by the fanatic (phillies mascot)

THE GUY SAYING "CASTELLANOS DEEP DRIVE TO LEFT CENTER FIELD... IN LONDON" and then the mics going silent for like ten seconds lmaooo - (idk if this was on purpose or if i'm just reaching)

montreal expos mention

[dumbass-tumbler-cryptid]

(For CF one shot) Hi I know you haven't written this yet but I'm a bit interested in cystic fibrosis and I wanted to share some ideas ​​(you don't have to use them of course) I warn you that I am no specialist, but I am wondering if I would like to become a doctor in this field in the future

- Spider could have atypical cystic fibrosis (it's a milder version, comfort and longevity is bigger) but could have asthma/CFD (Cystic Fibrosis Diabetes) to add some "drama" (I mean Quaritch and his overprotectiveness - I think he would treat Spider as if he was going to die at any moment)

- People with cystic fibrosis should use oxygen therapy, use a special vest and, of course, take medication. Meditation and singing are also recommended.

Some people also need a gastric tube (G-Tube I guess) usually plugged in at night as they need to consume more calories than a normal person and have difficulty gaining weight. I think Quaritch would be totally crazy about this and would never let Spider leave the table without finishing his meal

- Cfers often get various infections like pneumonia - Quaritch could be even more of a pain in the winter, for example not letting Spider take off his sweater or scarf no matter how hot he is

- People with CF also need to work on their lungs for example by doing cardio - I bet Quaritch would become something of a rough trainer lol

- Often these people carry permanent oxygen concentrators with them, usually in a bag or backpack along with oxygen nasal cannulas.

- In general, they have to be careful because they can't get closer than 6 steps to other people with this disease. I don't think Spider will ever meet someone with CF but Quarotch could scare him like this to prezent trying to sneak out and get to know new people by saying something like "You never know if a person is hiding a disease from you and you don't want to die right?

- Not so long ago a drug was discovered - Trikafta which significantly improves the lives of patients but it is terribly expensive - Generally I think Quaritch would buy Spider all the most expensive equipment such like a mobile vest without the need to connect

- I recommend you the book / movie Five Feet Apart , @polarbarry's Tik Tok profile and the channel of the wonderful Claire Wineland (*)

- I think Spider would be frustrated with being locked up and might suffer from some kind of depression.

If you've been watching Five Feet Apart Spider reminds me of Stella Grant in terms of being obsessed with control so as not to hurt her parents, and Will in terms of drawing black humor caricatures. Will's mother also blatantly reminds me of Quaritch - she goes out of her way to find a way to cure the child, spending a lot of money and constantly sending him on the latest trials of experimental drugs, methods of treatment against his will and feelings.

Yeah I know you didn't ask for any advice but I couldn't help myself because my head is bursting with ideas CF Spider (of course half of it has slipped my mind now and will probably come back to me when I send it) And I can't wait to see it. Again sorry if I'm intruding you can just ignore this message haha

Sorry for mistakes but it's now after midnight and I got a sudden surge of motivation to write this 😅

I really appreciate you reaching out! this is all very helpful so thank you so much for the ideas/resources.💞💞

Also you unknowingly stumbled upon something I've already written for Cabin in the Woods with this line: Quaritch could be even more of a pain in the winter, for example not letting Spider take off his sweater or scarf no matter how hot he is.

He does exactly that and Spider only has asthma in that story. Quaritch would probably be the most insufferable mother hen in the C.F Au

[docwmedicineman]

Then DIE MFers ! ! (includes CFers TOO)

Bye assholes!

[graffitiarchive]

[faebriel]

what does Jack & Niki’s dynamic look like pre and post games?

that is a great question nonnie!! :D

i don't think they actually knew each other very well before niki was reaped. if anything there would have been a short time where jack was in the grade below niki's at school, and then he was reaped and went on to win his games, and then he disappeared into the ghost town that is the district 12 victor's village and didn't come back out. at most, they might have been able to put a name to each other's faces. niki can certainly put a name to jack's now.

in that sliver of time after the reaping but before they reach the capitol, i think they struggle to entirely get along. i think they have a similar sense of humour at times - jack snorts out a laugh at niki's occasional biting, sarcastic commentary on capitol bullshit while niki is startled into laughter at some of jack's more pointed observations about some of the escort aides - but it can't erase the fact that they're there for different reasons. jack, sixteen and 12's only mentor, wants someone to win. anyone but him. he can't be the only one. the part of him that, despite it all, is still sixteen and stupid beneath his bitter armour, wants someone from 12 to win. niki, though, she's through. call her name? fine. they can drag her to the capitol, but they won't make her play their games. fuck that. whether her fellow tributes kill her or the capitol kills her first, at least she will die as herself. the capitol might be able to take her away from her district, from her friends and her home and her life, but that is the one thing the capitol can't take away from her. they can only get halfway through a conversation before it dissolves into arguing over niki's refusal to cooperate with her prep team, the training regimes, potential interviewers and capitol coverage.

and then niki encounters wilbur, and the stakes become too high to take the noble way out.

i think this moment is a turning point for jack and niki - she turns to him and asks him honestly to give her everything he has to help her get wilbur back, and jack recognises the fire in her long before she sets the arena alight. in turn, niki kind of... better appreciates? how every piece of advice jack gives her was won on the knife-edge of life or death. she didn't understand jack (and i don't think part of her understood that yes, despite their then-different goals, he felt the exact same way she did about the capitol) until she understood that feeling.

they're thick as thieves until the games start, as attached to the hip as they can be for a mentor and tribute, exchanged hushed whispers or weighty side-eyes whenever they cross a particularly foolhardy tribute or some capitol fad neither of them know enough to keep up with. it's not really common for mentors and tributes to be friends, but it's not common for one's mentor to be a year younger than them either, so their friendship is a bit looked over. after all, nobody is expecting niki to win the games.

while she's in the arena, jack is the one to send her a lighter. they can't openly talk about burning the entire worthless city down, but some actions speak louder than words.

i think after the games, splitting them becomes a lost cause - jack is one of the first people to visit niki after she is plucked from the arena, having her burn scars airbrushed out of existence. for the first time (besides that slim window after jack's victory, and before his mentor's suicide) there is someone else from 12 who gets it. someone else who can measure the span of their short life from the coal dust to the fire.

(jack's mentor killed themself after his victory, when it became apparent district 12 would have another mentor to raise its tributes. the first night jack and niki spend on the train, away from the cameras, niki informs him that if he does the same, she's going up in smoke - she will burn down as much of the capitol as she can until they really do kill her, damn the consequences.

he wasn't planning to do that. really. but he's definitely stuck now, he thinks.)

the victory tour is not exactly easy, but jack gives niki the best advice he can. without the spectre of the games looming over them, their friendship can breathe - niki quietly tells jack everything she remembers from home in her worse moments, everything he's missed in his self-imposed exile since winning the games, and jack re-enacts some of his worst capitol encounters, with voices and impromptu props and all. they don't talk about it, but seeing each other's pain mirrored - the nightmares they wake up from at three in the morning, how niki itches at her skin for the sensation of phantom burns, how jack's hands shake when niki gently tries to talk him into writing a letter for his family - is another mark against the capitol. they're like a pair of stray dogs in their own tiny pack, defensive and sharp-toothed. niki rests her hand against jack's back as he ends up throwing up half the booze he drinks at games' parties. jack holds her by the wrists and counts out deep breaths with her in corridors when the fiery anger gets a little too much for niki to bear. they're restless. neither of them feels comfortable just going on like this. but they can't say that, so they exchange just the right sequence of darting eyes and finger taps (wilbur has been tutoring them) to communicate their disdain in crowded rooms.

they find their opportunity to scheme with the arrival of district 13.

[georgiapeach30513]

Very much so! CF research is so needed! There is Trikafta now, and it seriously is a miracle drug for CFers. However, it doesn’t help every mutation. We need more!

https://twitter.com/sebstanarchive/status/1866484096140018051?

I love this! Cystic fibrosis foundations are very near and dear to my heart.

[saltyswifty]

Why so salty?

I feel like my url deserves a little explanation. I’m not (usually) a *salty* person but here’s why.

I have Cystic Fibrosis, it’s a chronic illness that affects the lungs, digestive system and more. We are best known for our chronic coughs but it’s much more than that. CF also affects sweat glands and the amount of salt that I release when I sweat which leads to extremely salty-tasting skin. (Don’t be gross y’all, a kiss on the head is all you need to taste the salt.) My body loses a LOT of salt when I sweat. Like a LOT. So I crave salt and I eat LOADS of it which is awesome when people tell me eating too much is bad for my cholesterol I lay them down with FACTS which is I . Need . Salt . And lots of it. 

I am forever “Salty” and I love it. So that’s why I’m a SALTY SWIFTY. Any other Salty Swifties on here?

[just-breathe-fight-cf]

The Atypical Cystic Fibrosis Nightmare

     Having atypical cystic fibrosis is a nightmare! With just plain CF, there is no indecision or second guesses. You have a dedicated care regiment, organized therapy and policies put into place to help you during times of flareups and infections. But with aCF, there is no help...no dedication or policies to keep you healthy and safe while in the hospital. This typically leads to a shortening of life expectancy for aCF patients; just because the rules have not changed.

     All my life, I was diagnosed with asthma. Whoever, when my asthma became unmanageable and I was not responding to typical treatments, a study was done that found out that I don’t have asthma. So you’d think they’d correct their diagnosis...

     Wrong.

     For years, physicians stood by and watched my health decline. They tried drug after drug, therapy after therapy with no resolve. When they ran out of ideas or caved in; it was your fault that they failed and either dismissed you from their care or just ignored you.

     I had one pulmonologist back in 2014 who loaded me up with drugs. His philosophy was that if he could not control the symptoms, then he’d just overdose your medication. At that time, I was on Advair, Qvar, Asmanex, Spiriva, Theocron, Prednisone Regiment, Breo, Incruse, Albuterol, DuoNeb, Singular.

     It wasn’t until 2016, when I got a new pulmonologist, did he realize that this might not be just asthma. With digestive complications, metabolic issues, lung disease and a long history; he agreed that the disease sounded like cystic fibrosis.

     Without the aid of a positive genetic test and sweat test; my access to many programs was nonexistent. To correct the weight loss and muscle loss we added creon to my regiment and that stopped the muscle loss and balanced my minerals and vitamins. With the constant lung infections, we decided to add CPT to remove the mucus and in a year, he cut infection rate in half. Pulmonozyme and hypertonic saline was added to the regiment.

     For the first time in my medical history, I was actually improving.

     When my healthcare was noticed by the CF Center at Multicare, they were very hesitant with my care as they did not know much about atypical cystic fibrosis; however, the symptoms I was having matched that of a CF patient and I was only responding to CF-style treatment. In November of 2018, I was suppose to go to the CF Center for a work-up, but it was delayed after hospitalization.

     I was told over-and-over by pulmonologist that I did not have CF, yet they could not say what was causing these symptoms. The hospital doctors said that everything looked like CF and when they tried to treat it only as asthma, my health rapidly failed. With all that I’ve been told, I expected to be notified that my new CF doctor was dropping me from his care.

     That call never came, however, only 24 hours before my CF clinic visit, they canceled it. However, it was canceled due to my hospitalization and rescheduled one month out.

     Is this typical of a CF center? Typically, a pulmonologist wants to see you after a hospitalization, so I was surprised to be delayed. I checked my diagnosis codes and still saw that I was covered by the CF Clinic and seen for non-classic cystic fibrosis. A day after my canceled appointment, there was an appointment for the CF Nutrition service scheduled.

     I decided that I was no longer being followed by the MultiCare CF Clinic and was glad that I did not drop my CHI Pulmonologist. About a week later, the MultiCare CF Clinic called to reschedule a new appointment that will be my first CF Clinical appointment. They asked me to mask up and expect a long meeting with the doctor, nutritionist, social work and nursing.

      Where exactly this is going? I don’t know!

      Do I call my CF Doctor, really my doctor? Mostly with what I’ve heard from his colleagues. I am highly doubtful that they will take my case serious. And why should they? No one can solve this puzzle.

[lalalaurentg]

Hey tumblr!

Long time, no see! I stopped using my tumblr blog I had in high school a few years ago. I decided recently to start a new blog in hopes to connect with others with CF. I’m 22, and I was diagnosed with CF when I was two months old. As I’m getting “older” (for a CFer) my disease I’m slowly progressing and I’m feeling the need to connect with others who know what I am going through. Drop me a question or reblog with a comment. I’d love to (virtually) meet you all!

[kmmoghadaspour]

I know I posted this photo on my story yesterday, but I wanted to make a longer post about it. ⁣ ⁣ I started a new drug yesterday, called Trikafta. This is a drug that is drastically changing the lives of CFers all over. It’s amazing and exciting and terrifying and many people still don’t have access to it. It doesn’t work for everyone; you have to have a certain CF mutation, and even then, some people benefit more than others. ⁣ ⁣ We thought I wasn’t going to be able to take it. All CFers have two CFTR genes that are mutated and don’t work properly, and the two genes listed in my chart weren’t the one needed (DeltaF508). ⁣ ⁣ We found a photocopied paper of my genealogy study from 2012 further back in my chart. The third gene listed was DeltaF508. ⁣ ⁣ To my knowledge, this should be possible. I don’t know how it is. Neither does the internet. All I know is I’m incredibly blessed by God to, not only be able to take this medication, but to get it through my insurance. ⁣ ⁣ Currently, in the United States, this drug costs over $300,000 a year. That’s asinine, especially for a drug that is life saving. ⁣ ⁣ If you’re curious as to more about this, I posted a new video today on YouTube talking about it a little bit more. You can get to the vide through the link in my bio. ⁣ ⁣ I’m so excited for everyone, including myself, who gets to take this. 💜⁣ ||⁣ #cf #cfer #cysticfibrosis #cysticfibrosisawareness #cysticfibrosisfighter #cfwarrior #cfwarrior #cffighter #trikafta #trikaftaupdate #trikaftaapproved💜 #deltaf508 #deltaf508gene #YouTube #blogger (at Hollywood, Florida) https://www.instagram.com/p/B71uCY8nL99/?igshid=6xos9ya6bttn

[onesaltygirl]

Me when I’m totally serious

[mrstrongfoundation]

Just got home from attending the @fivefeetapartfilm fan event. It officially hits theaters this Friday March 15th & it’s one that I highly recommend you all go out and see. This is one of those motion pictures that hits so close to home for me. It touches base on something that I deal with on a daily basis with my 9 year old son, Landon called #CysticFibrosis.”This is @justinbaldoni directorial debut and let me first off by saying he did an amazing job with his first feature film and he did a terrific job portraying the lives of a Cfer. Being the mother of a child with Cystic Fibrosis, I was anxiously awaiting this movie to hit theaters. I had read that there was some controversy about, whether or not the disease was accurately depicted in this film and I have to say it was spot. I wasn’t so sure about the title because when my son was first diagnosis I remember being told that he needed to stay 6 feet apart from all other individuals with cystic fibrosis, but as you watch the film the title all makes sense and makes you literally fall in love with the title and what it stands for. This was a film about hope & love & I am so thankful that @justinbaldoni & his amazing cast @colesprouse @haleyluhoo & crew took a chance on exposing the world to the behind the scenes of what it’s truly like being confined in the body of someone with cystic fibrosis. And reminding them never to take the life you have for granted & not because someone else has it worse, but because we are all here on borrowed time so make the best of the time given & live for the moments & the memories. Thank you from the mother of a cfer you all are truly incredible & it’s a film that I will always hold near & dear. 💕 #CysticFibrosis #FiveFeetApart #Cfer (at Regal Entertainment Theater 1914) https://www.instagram.com/p/Bu-ONAUgFBeRsqlaO7SAIVPfvU_iMEWlQbE6j40/?utm_source=ig_tumblr_share&igshid=1gkmgstfxnpkg