"Whoa, What Are Those For?" CF Medications In Public
If you know anything about Cystic Fibrosis, you probably are aware of the insane amount of pills and other therapies that we require in our everyday life. While there are a lot of medications, patients with CF, like me, still have to go on with our lives like a normal person. This includes having to do our medications in public. When I have to take my Cystic Fibrosis medication in public, I am usually pretty discreet about it. Although, sometimes it’s hard to keep them from being seen. When I was in elementary school at lunch, I was asked many times about my enzymes. Being that young, I only understood that I needed them to digest my food. So, that’s what I told my classmates. Nowadays, people are aware I have something going on due to my constant supplemental oxygen. When I go to eat and pull out my 6 horse-sized enzyme pills, I get a “Whoa, what are those for?” or a “What are those for? They are HUGE. I can hardly take one small pill!” I use this time to create awareness for Cystic Fibrosis and explain that while CF affects my lungs, it also affects my digestive system causing a problem absorbing nutrients and breaking down food.
Another medication that is hard to hide is my breathing nebulizer machine. Sometimes I have to do it in public. When I was younger I was embarrassed, due to all the stares I received. Now, I do it with confidence because there’s nothing to be ashamed of. Some people come up to me and ask me about it. Like the enzymes, I always tell people about Cystic Fibrosis because it’s impossible to get awareness out without talking about. Plus, if the public is not educated about it, then there likely won’t be enough funding for a cure or drug development. When I get asked about my breathing treatment, I explain that I have a genetic illness called CF that causes my lungs to fill with sticky mucus that will eventually grow bacteria and cause my lungs to scar, which is irreversible. This can lead to needing a double lung transplant when the lungs are too scarred up and the lung function drops too low. So, in order to get this junk out of my lungs and to breathe easy, I need nebulized breathing treatments.
I am never embarrassed when people ask me questions in public about my medication. I find it as a way to open up someone’s eyes and heart to the struggles of a person with Cystic Fibrosis. I always hope that after speaking to the public, I spark an interest in them to go research it and hopefully get involved with their Cystic Fibrosis community to find a cure. Hopefully one day we will have a cure. That’s a world I dream about :)
Call me crazy. Call me delusional. All I can say is this era definitely a heaven for Chanbaek shipper *yay* ❤
👍 Let’s check it out!! *wink*
Call Me Baby’s (couple?) tshirt
Can you see the letter in their tshirt. Letter B (Baekhyun?) for Chanyeol. Letter C (Chanyeol?) for Baekhyun. That’s look like couple tshirt, isn’t?? Moreover they’re standing next to each other ❤ |cr.in the pict|
Baskin Robbins CF
So this is from EXO - Baskin Robbins CF Making Film. Still can’t take my eyes from Chanbaek. Enjoying the the movie date, running together, and have a selfcam time together!! ❤
EXO Next Door Mini Drama
Aww, the way Baekhyunie taking care Chanyeolie
I don’t know about you guys, but I really need another version from EXO Next Door with Chanbaek as main character!!! ❤ |cr. in the pict & xx |
Chanyeol Instagram Update
Yeah, that’s from Chanyeol Instagram. Haha, can I put title for that? How about “Story of My Life”?? And Chanyeol’s story be like : [pict.1] Chanyeol as sexy, free, and single person. [pict.2] Chanyeol with Baekhyun (as couple??) [pict.3] Chanyeol’s little family (and happily ever after)
This post actually for Baekhyun birthday. This post gave me diabetes because Chanyeol’s message just really sweet 🎂 He also said ‘I love You’ in the end of his post ❤ And you can see that they took this pict when they’re still wearing those couple tshirt *wink wink wink*
Best pict ever 🏆 Chanyeol and Baekhyun took a selca with baby Seojun when filming ‘The Return of Superman’. YES this is REAL!!! This isn’t just a photo edit for Chanbaek fanfiction. Kekekekeke,
I need to calm down. Slap me, pinch my cheeks, tell me this isn’t just my random dream after I read a lot Chanbaek fanfictions. Chanbaek … parenting … twins … omg my feels *ugly sobbing* [Just hurry up, get married and have babies!!!]
❤❤ Can’t wait for next week!!! Watch the preview here
‘I Am Korean’ MV Filming
Baekhyun gave his shirt to Chanyeol because he noticed that chanyeol shirt was too short. But some people also said that that shirt belong to Chanyeol, and Chanyeol gave it to Baekhyun because Baekhyun felt cold. I don’t know the real story behind that sweet moment. The most important thing from both story is they’re care about each other!!! ❤ *hug Chanbaek* [cr. in the pict]
More more more … I’m expecting more Chanbaek moments in the future
Request: REALLY ANGSTY ONE WHERE READER IS SO SELF-LOATHING BECAUSE OF A BIRTH DEFECT AND HER FRIEND TYLER DOESN’T REALIZE TIL SHE BREAKS DOWN AND TELLS HIM EVERYTHING AND SO MANY TEARS AND TYLER IS LIKE TRYING SO FUCKING HARD TO MAKE HER FEEL BETTER THAT HE JUST SINGS FOR HER AND SHE LAUGHS AND CRIES HAPPY TEARS AND IDK THIS MIGHT BE A SHITTY REQUEST BUT YOU WANTED AN ANGSTY ONE AND I WAS LIKE FUCK I WANNA MAKE MY FAVES HAPPY
Warnings: self-loathing, depressing thoughts, and death
A/N: So I decided to change the prompt a little bit because it was harder for me to write for a birth defect… I thought about it a lot and I just had this idea go through my head about changing it to cystic fibrosis… so that’s what it’s going to be instead! It’s a little tribute to one of my friends who passed two years ago.. She had CF. I still think of her today. I miss you everyday, Amanda. Thank you for inspiring me and letting me see how positive you were throughout everything… I hope you’re resting in paradise where you aren’t in pain anymore… But I really hope you guys enjoy! Also I was going to make this a lot longer but I STARTED TO CRY AND I COULDN’T BRING MYSELF TO DO IT SO I APOLOGIZE. ALSO I DID THIS IN ONE SITTING SO I HOPE YOU GUYS LIKE IT.
Crying, you lean your head back onto the pillow of the hospital bed. It had been a rough week for you. You had several asthma attacks, following the news of your lung capacity decreasing once again. You were on the lung transplant list, but you definitely had a long ways to go before they even got to your name. The doctors only gave you six more months to live, and at this moment in time, the doctors lowered your lifespan to only four. And if you’re being honest with yourself, you were scared. But you were ready to go.
It physically and emotionally pained you to have to carry an oxygen tank around everywhere you went, having a tube stuck up your nose, not being able to do a lot of things with your friends or family. Even doing something as simple as sex could cause you to have an attack. And honestly, you hated that fact. The thing was, you were dating Tyler Joseph, and you felt awful about yourself whenever you were with him. If you did anything intimate, even something as easy as a makeout session, you would have to stop after a while because you couldn’t breathe. It was embarrassing for you, and probably to him. Going to one of his concerts was always hard for you because it can get so hot and stuffy within the venues. You wanted to support him, but your lungs didn’t ever want to support you. You felt terrible for never being able to attend his shows. Hell, you could barely even go on a swim without your lungs giving out on you.
You didn’t know how to tell Tyler. You didn’t want him to worry. You didn’t want him to freak out. You just wanted him to be happy, and you felt like he couldn’t be happy with you. You were different, you were ashamed of yourself. Everyday you would look in the mirror and see someone you didn’t like. Everywhere you went people would stare at you because you had an oxygen tank rolling behind you, and you had to have a tube in your nose so it could help you breathe and deliver oxygen to the rest of your body since your lungs couldn’t do their jobs. People judged you, it was like CF was a disease. People would cross the streets to avoid you. Murmurs broke out from children, always asking their parents what was wrong with you. Then it was always followed by a parent apologizing for their kids’ behavior. Sure, you were used to it, but it didn’t help the fact that you would hate yourself even more because of it.
Daily tasks were a struggle for you. Normally, people could do things like washing their face and showering with ease. Walking and doing exercise was something that wasn’t a challenge for most people. And the worst one, is sleeping. It was hard to find a comfortable position to sleep in because of the tubes in your nose. It wasn’t like you could take them out during the night either. Every week, Tyler would have to help you get the mucus out of your throat by helping you pound on your chest as you lay on the bathroom floor. It wasn’t a pretty sight, but you were thankful that he helped you out.
You lifted your head when you heard your door open. To much of your delight, you saw your boyfriend come in. He had a gentle smile on his face, but you saw the concern in his eyes.
“Hey (Y/N). How are you feeling?” he asks as he sits down next to the hospital bed.
“Hey Ty… I’m okay. I’ve been better.” you whisper. You start to cough and your head falls back to the pillow in defeat.
Tyler frowns and takes your hand in his, intertwining your fingers together. He rubs small circles at the base of your thumb and leans down to kiss your hand.
“Things will be okay… I promise.” he replies softly.
You gave him a slight smile and nod. You inhale as deeply as you could and sit up in the bed, turning your head to face him.
“Actually, I need to talk to you about something Ty…” you croak.
He furrows his eyebrows and nods.
“Alright, hit me.”
You shut your eyes and give yourself a quick pep talk in your head.
“Okay… well… first off… you know I love you. And I wish I could give you everything in the world but I physically can’t. I hate myself everyday for being so different. I hate myself being so ashamed of myself but I can’t help it. I mean, look at me! I’m a freak! I have to have this plastic tube in my nose all the time, I have to carry an oxygen tank with me, all the asthma attacks… especially the flem in my throat… I hate not being able to support you. I hate not being able to come to every show… I hate that we can’t even kiss for a few minutes without me running out of breath… and I’m just so sorry for putting this burden on you…” tears fell from your eyes and you started to wheeze. You wiped at your eyes and brought your knees up to your chest.
Tyler sighed and gently scooted you over on the bed, sitting down by you. He took you in his arms, stroking your hair, whispering sweet nothings in your ear.
“You aren’t a burden, (Y/N). If you were I would’ve left a long time ago. You are the most amazing person I’ve ever met. You are the bravest, and the strongest person I know. And I wish you knew that. I love you so so much, and I don’t care for the physicality. I’m good just knowing that I can hold you. You have given me all the support in the world. I don’t know what I would do without you. You have taught me so much. And you are a light to everyone you know. I can promise you that.”
You shake your head.
“I don’t think you understand how hard it is for me to be like this and to not be able to live a full life with you! It hurts me so much and I don’t want to hurt you anymore. I’m a ticking time bomb! The doctor said I had only four months left!” you manage to scream.
Tyler frowns and closes his eyes.
“(Y/N)… I will pay the money to have you moved up on the trasnplant lis-” he starts.
“No. I’m not going to let you do that. They don’t always work… and I’m tired. Physically and emotionally. I’m ready to go, Ty… and I wish I didn’t have to leave, but those set of lungs are only going to do my body so much. Please… let’s just make these last few months count, yeah?” you say weakly.
Tyler doesn’t say anything at first. You knew that it hurt to hear you say those words. But he knew what you meant. He understood the pain. He understood the toll that it had on you. He didn’t want to lose you. But all good things have to come to an end, right?
Tyler pursed his lips but nodded slightly.
“I wish… I wish there was a way to create perfect… so it would make your life feel so much more worth it. I wish I could take away your pain. I really do…” he croaks. There were no dry eyes in the room anymore. “I can’t imagine where I’d be if you had never rescued me… you gave me hope and strength to live… and hopefully I can be that person for you.” he says.
You simply smile at him and wipe his tears away, giving him a passionate kiss to the lips.
“You’ve already saved me, Tyler Joseph. And I can’t thank you enough for that. And I will always love you, no matter what. I promise.”
He smiles and kisses the top of your head, knowing the next few months were going to be some of hardest months of his life.
Tyler’s POV, four months later
I got up from the bed, looking at the empty space beside me. I quickly looked away, getting on my feet and walking to the closet. I opened the door and grabbed the black suit inside, laying it on the bed. I touched the pillow where her head used to lay, a single tear falling onto it.
“I miss you everyday…” I whisper before continuing to put the suit on. I take the paper that was placed on the the table by the bed, putting on the inside of my jacket pocket. I looked down at my hands, spinning the wedding ring that was there.
I walked down the same steps where she used to walk, and went outside to wait for Josh. As he pulled up, I got in the car and closed the door.
“You okay, man?” he asks quietly.
I pause, not knowing what to say. I wasn’t okay, but she wasn’t in pain anymore. So I had to be happy about that, right? Instead of giving him a yes or no, I simply shrug my shoulders. I look out the window at the house she used to live in, and my heart sinks.
“I don’t know if I can do this Josh. I just… I can’t…”
“Hey, she wouldn’t want to see you like this. Do it for her. I know she’s going to be here in spirit. She’ll be guiding you along the way, and she’s always going to be watching over us. Over you.” he says and places a hand on my shoulder, giving it a strong squeeze.
I nod a bit, becoming silent the entire way to the cemetery.
As we arrive, I’m greeted by sad friends and family, all giving me their condolences for my loss. A bunch of hugs were given, and many tears were shed. My hands started to shake as the service started. As the preacher finished his regards, I went up to the podium. I grabbed the piece of paper from my jacket and opened it slowly. I wiped at my eyes and looked out at the crowd of people, wishing that this wasn’t her funeral that we were at.
I cleared my throat and wiped my eyes before starting.
“Um… I had something written out, but I don’t think that it’s something that should be shared today… so instead I’m going to improvise. I met (Y/N) when I was little. We became fast friends and even at that young age, I knew I wanted to marry her. When we grew older, I asked her to be my girlfriend, and let me tell you, it wasn’t easy. She denied me three times before she finally said yes. She told me she didn’t want to ruin our friendship if it didn’t work out between us, and I somehow managed to convince her otherwise… She was diagnosed with cystic fibrosis when she was ten. She had the most positive attitude about it, and I adored her even more because of it. As it progressively got worse, she still tried to have a good outlook on it and on life in general. She was the strongest person I knew. As twenty one pilots formed, she would listen to all of the ideas I had in my head. She would give me feedback and criticisms, and that was the most amazing type of support she could’ve given me. She would let me sing whenever I wanted… when she looked at me… or at anyone, you could tell that she was filled with love… her smile would light up the whole entire room, and she was almost like a beacon of hope to everyone who knew her. The day after she told me the news, I wasn’t quite sure what I was going to do. It was hard for me to picture a life without her… the hardest thing I’ve ever had to do is live a life without her. Having to live without seeing her everyday, without hearing her laugh. I knew I had to give her the best last few months to her. She deserved it. We eloped, went on our honeymoon to Italy, and we did everything that was on our bucketlist. I miss her everyday. I know she’s with me today, and she’s always going to be in my heart.”
After my speech, I walk to the piano and sing a medley of some of her favorite songs… all very fitting for the funeral.
After I was finished I walked back to the seats and waited for everyone to say their goodbyes. I zoned out and cried silently to myself. After the service was over, I immediately went home. Well, what was left of it anyways. Home didn’t feel the same without her there. And all I did the rest of the day was look at all of the photographs we had together. I couldn’t wait to see her smile again.
It was long overdue. So, that night, as I fell asleep, I dreamt of her. And it everything felt okay for a while.
If Tayeon is so tired of the idol
life, then why did she re new her contract with SM? She could’ve still done CFS
without being a GG member. Being a responsible leader isn’t even an excuse when
she kicked Jessica out. I’m confused on what she wants