Thursday, May 2, 2013

'Head Underwater'

If you're curious as to the name of my blog, I'll tell you.

There's a song by Sara Bareilles called "Love Song". It is a love song, but the first few lines I've always loved and relate to:

"Head underwater
and you tell me
to breathe easy for awhile....
The breathing gets harder, even I know that..."

With this disease you do feel like you're drowning sometimes. And besides that, I'm under constant stress. Always dealing with meds, treatments, doctors, new doctors, hospital visits, new meds, and it's crazy. So you feel like you're underwater sometimes, dealing with way too much, and it's all going over your head. And I think the lyrics fit me perfectly.

Here's the song in case you want to hear it :

Day 2- You don't look sick.

I did remember to post today, so that's an accomplishment. And I slept for almost 12 hours last night, another huge accomplishment. "How can anyone sleep 12 hours??!" Well, when you're exhausted , it's not too hard. So anyways, what to talk about...

"You don't look sick!"

I think I've heard that more times in my life then anything else. There's a few other phrases like that.
"So, are you still in pain?"
"How are you feeling?"
"Are you contagious?"

"Will you get me sick?"
"What do you mean you're in the hospital?"

I'll talk about those later. But the first one. Everybody tells me how sick I do NOT look. Except my mother, she lets me know hahaha. But when I tell people I'm really sick, they don't believe me. I have a cheery face. I always smile, (mainly because people are so idiotic I can't help but smile,) and I try not to let my disease keep me down. Although it is very hard. The only times I 'look' sick would be when I'm in the hospital and reallyyy bad (my mother usually starts off a visit with, "wow, you look like hell." Which some might find rude, but it actually comforts me. I know she won't like, and I already know I look bad even though the nurses refuse to admit it for the most part. If anyone will tell me straight up, it's my mother, ) or when I have an arthritis flare up. Even then I don't look totally sick. I just can't walk, bent over, maybe a fever, a rash, and in a lot of pain.

We don't always look sick. For most of us, we look anorexic. We're usually very skinny. But besides that, (and the obvious coughs) you can't tell on the outside. So instead of saying, "Well, you don't look sick!" maybe take a chance to find out why they don't look sick. Maybe they have a hidden illness. Maybe you can take a chance to become aware of another disease. Learn something new. It won't hurt you.

Wednesday, May 1, 2013


So, I am going to attempt to write everyday for CF Awareness Month. (It's May, by the way.) In all reality it's probably not going to happen. But I'll try.

I'm working on getting a job, which is very hard. Besides the whole getting sick every month thing, I'm just tired. "You're only 18, you can't be tired!" Well, I can. Ass.
Just breathing takes twice as much work for me than you. Think about the last time you ran up a few flights of stairs. How winded you were? How tired you were? How you had to stop and catch your breath? Well, I can have a conversation and be that winded. So just to talk to someone can make me as tired as running up flights of stairs. And that's one conversation. I only have so many spoons in a day, some day I use borrowed spoons and have less the next day. If you have no idea what I'm talking about, look up 'The Spoon Theory.' I'll add a link. I reference to spoons a lot in my life. It helps me explain it when I have no words. I'm just tired honestly. Even today. I babysat the past few days, and I already want to sleep for days. And have a full time job? Smh...ok.

Well like I said , I'm exhausted. And I have a room to unpack. And I woke up at 5:30 AM to babysit and only got home an hour ago-ish. So this post won't be long. Here's the link :

Write 'Just Breathe ' on your wrist, or even arm. Support the cause this month. Wear purple a lot. Over use purple. Become an organ donor, we can use your lungs! You can save the lives of many becoming a donor. Maybe one day you'll save my life. So thanks, in advance. As much as I say I won't need a lung transplant, I'm also realistic. Talk about a childhood lmao. Well, good night! Thanks for reading!

Sunday, April 28, 2013


When someone you love dies, there is absolutely nothing anyone can say or do to help you. Except one thing, leave you alone. Which sounds weird, but I think it's true. You have to grieve and you have to do it in your own way. And one thing to NOT say, is "I know how you feel." Don't say that. At all. Ever. It doesn't help. All it does it say 'yeah, I've had this happen. you should say I'm sorry. And not make this all about you. I had someone die too. ' At least that's what it says to me. You won't EVER know how they feel. I was always told that every love is different. So if you had a dog die, and someone's husband dies, it's not the same. If your sister died, and someone's dad died, it's not the same thing. Even if your husband died, and someone else's husband dies, it's still not helping. Unless you jump in their brain, and turn the switch off, you're not helping. And you just have to realize that.

Don't even say that you're sorry. Because what did you do? Did you kill them? Because if you did, run. Don't stand there. Otherwise, you did nothing wrong. There isn't anything to be sorry about. And the other person probably doesn't know what to say, if they even feel like talking.

I met this guy with the same disease as mine. Within a month, he was like my best friend. We talked all the time, laughed with each other, and loved watching Ellen. When we were sick, we talked about how tired of it we were. In ONE month. I loved that boy, he was one of my best friends. Then one day when I woke up to say hi, and he was gone. Just like that. In a few hours, he was dead. For weeks I cry. I STILL cry almost a year later when I think about him. Which is a lot. Everyone told me they were sorry, and I didn't feel like replying. I wanted to just cry all day. And the one's who texted me, I don't think I replied to most of em. My boyfriend helped me a lot. He sent me quotes that really helped me, he knows I love quotes. And he gave me the space I needed, but he let me knew he was there. I just needed to grieve. I drowned myself into my music for weeks. And after awhile, I lived. Which was the most I could do for him. I knew he wouldn't want me to be sad.

I had a dog die a few months ago. I miss him so much. And it was so different. The feelings .Yes , they both died, but the connections with both were so different.

So when someone dies, don't do something stupid. Or say anything stupid. Just let them grieve. Let them know you're there to listen , but they do need their space.

Thursday, January 10, 2013

I have some maybe exciting news. If you pray, please pray for me. I'm hoping this all works out.