So, its May, aka CF awareness month. I'm in the hospital, since last Thursday. I am doing better, had some of the best lung function scores in YEARS! I feel amazing,I can breathe! I'm just really really really tired.
So there is a movie on Thursday you all should watch. It's called 65RedRoses. It's on the Oprah Winfrey Network at 9pm I think? I will check and post tomorrow the exact time. So anyways, I should be out after the weekend I think.
They say if you were to take a straw and breathe in it, that's what it feels like.To have CF.
But it isn't just that. There's emotional pain, mental pain. Knowing that this will probably kill you, that you can't be normal. I watch my sisters everyday. They get up and eat , go hang out with friends, complain about a headache, last minute sleepovers , planning vacations. All without a care in the world.
I miss school, a lot. I HATE missing school. But I have a terminal illness that makes me sick, every second of the day. I don't think people understand that sometimes. Like my mom, I love her to death. She has been there everyday for me, every moment I need her. But sometimes, she doesn't understand. I know she has had cancer, so she knows what it's like to be sick. But also, she recovered. Went into remission. I can't. I know she understands all she can. She knows being sick, and she is there EVERY second I need her. I went through a really hard time last year, and she stayed with me every moment I was in the hospital, for 2 weeks. And I can't ask for a better mother. I have friends who say that basically, their parents don't care. And I know mine does! It's just, there is no way she can possibly understand sometimes. I know that, but she does try as much as she can, and helps me with anything I need.I can't ask for anything more then for her to try, because I know that she goes through stuff I can't understand, as much as I want to. I love her more than anything <3.
I go to school sick a lot. I cough during my exams, I cough during gym when I used to have it. And I throw up in the bathroom, but stay for my next class for the hundred question test. Sometimes I'm just too sick. I don't want to face the stares, and looks, in school. So I stay home. It sucks when people stare at you during a test, and you can't stop coughing. So I do miss school a lot, I wish I didn't. Sometimes, you are just too sick. But, I have amazing grades. I study a LOT, I do my work, I work really hard. I have A's and B's. I've only failed one class, and it's because I have other more important classes. Being in the hospital almost EVERY month but 2 since the school year started, I think I am doing pretty well considering I teach myself two weeks worth of work every time I go in the hospital.
I think it's the emotional and mental pain that hurt the worst. I have many friends of mine who agree with me. You get to the point you just give up sometimes. It takes a lot to wake up every morning, facing the day. You know what's ahead of you sometimes, not all the time though. You might get sick suddenly. And knowing you have so much to do to stay healthy for one day, it's very hard.
I know I will never be normal, at least not until there is a cure. And maybe not then either.
You complain about: headaches, colds, stomach aches
We complain about: everyday migraines, colds that land us in the hospital, stomach aches and horrible cramps if we miss a pill and eat something.
It's not like we are saying your problems aren't important, because they are. But this kills us. Literally. It is THE number one genetic killer. I have friends who have died, and I miss them. You ask people if they know what CF is, and they say, no. You ask them what cancer is, and they know exactly. But you CAN recover from cancer, go into remission. You might die, but you can put up a good fight. I have a friend going through cancer right now, and it hurts to watch her and not be able to do anything about it. So, we need a cure for that, too. But I know she will beat it, she's a strong woman. <3 And with CF, you are going to die. And I don't know any CF people who DID NOT die from CF. There is no "remission" , there's just a "I can actually breathe a little today."