I'm going out of my mind.

I GOT A JOB! I'm sooo excited! I haven't told them about my cf....So I am kind of worried. But I have a doctors appt at a new (and adult) clinic tomorrow. I am having a pretty great time here. Miss my mom, stepdad, and siblings but they know I'm here. Trying to get everything together. Still crushing on that guy really hard(: But some times its hard, trying to figure out school and what I want to do when its over. But got to go do ...something. Maybe watch some tv. 

It's been way to long since I've posted. I need to change that. My boyfriend and I had broken up....not cause he's a bad guy. The complete opposite. But I watched my cousin go through stuff and it made me think. And I was scared, I didn't know if we were after the same thing in life. But I think I'm falling in love with him? 

He cares. Which is something hard to find. I read every day about CFers who can't find a guy that won't run off on them at the first mention of a "disease". Then I find him. No, we haven't met...but still. He's amazing. He's always concerned. He understands me. We just get along so well. I talk to him for hours and he makes me laugh the whole time. When I'm upset, he calms me down so much. I swear he's saved a few doctors from a screaming match from me.  I really want to get back together with him...we're taking it slow. And if you know me, that's extremely difficult for me. I don't like "slow". 

But I'm just scared, ya know? I found out the bug that keeps getting me sick is gram negative. and that is EVERYTHING we know. Which means, nothing. It's such a large spectrum.

You know the rainbow? How it's one thing? But has many colours in it? Yeah, like that. Gram negative is a large spectrum like the rainbow....we just don't know what colour the bacteria is. But right now, it's not looking so good....and I'm really worried. All I ever wanted was to fall in love, get married, have kids, be a mom, and a wife. But I know CFers have problems having kids once their lung function hits a certain number. And then you have to wait for it to decline enough to get a transplant...which could be years until that happens. And I don't want to wait years and years....I mean that could be ten years! And that's not what I want. Life wasn't too bad, then kablamshit, something like this happens. I realized for the first time the other day I might die. And it scares me. A lot. 

I haven't been this scared since my mom was crying outside my hospital room, thinking it was the end two years ago.

18th Birthday!!

So yesterday (7/7) was my 18th birthday! I went to the club the night before with my cousin and her friends. It was a blast! Except the getting lost in queens...but yeah, it was fun! 
Later that day I had a horrible stomach ache. I bloated and was doubled over(thank you CF!) and still not feeling 100%. It'll get better. If I sleep on my stomach, I bloat sometimes. But sometimes I can't fall asleep any other way...It comes down to, sleep and risk it , or don't risk it and don't sleep. I usaly risk it and loose. But I don't know what else to do. It's so bad sometimes I throw up. 


Anyways, I made it till 18! BIG accomplishment. We weren't sure I was going to come home from the hospital 18 years ago. Then I wasn't suppose to make it at 5...then 13...then a scare a couple times in the last 2 years.....and ..TA DA. I want to thank God for this. And my parents, family, and all my friends who supported me. It's hard to find good friends like that. And its hard for family too. They don't always see you sick, and they get used to the coughing and don't think any of it. But I'm glad my family does. I've survived so many things through my life, and I've always been called an "old soul". I was the 13 going on 30, the 15 going on 45. I was never just a kid, I never acted like one. I have to know what's going on, if I don't know I get very anxious and worried. 


So anyways, birthday was awesome. I oovooed with my bf, met his dad on oovoo(funny story) and he told me he's getting me Diablo for my bday...(best bf ever??! haha) so,I'll be back later!!(:

Drama.

So, first here's a cool blog I found. http://bellasonamission.blogspot.com/ read it!
Ok, so today was fun.
I have a HORRIBLE sunburn (I accomplished with sunscreen) from last week. It's peeling. But I had a shirt over it and sun lotion in the pool. But I might have got burned. It was hard with all the smoke today, and then fighting with my "best friend." I think I don't have her anymore... I have plenty of best friends...but..not like that. I have known another girl since 1st grade. Twelve years. We are crazy close..but have other best friends. but this girl I was talking about....she was my closest person. My "it person". And it completely sucks.

Graduation

So, I graduated high school! I was so happy! I didn't graduate with honors, which pissed me off. 2.756 or something...honors is 3.0 I was in the hospital all year, are we serious?! Anyways, I don't care too much. It's over. But I am in NY for a month. Sooo excited. I do have to go back for docs and my port in a month,but for now it's going to be fun. 


I am sleeping horribly. I keep getting what is called a "hypnic jerk". I get jolted away, that falling feeling. I get it multiple times, more often then usual. I hate it. And I am barley sleeping. But it seems naps help me a lot. 


I talked to Josh tonight, and I feel a lot better. I miss my friends soo much. I still miss Jessie a lot...more then I thought possible....


I figured I'd update everyone. My chest is doing pretty good. Been having a lot of stomach issues. I need to go to bed...so tired. I tasted like salt...I swear I was covered in it!! I sweated in the car (horrible AC) and it was like I was covered in salt...so weird..but that's a CFer for you. Well, I'll post tomorrow when I can think. Night! (:

Jesse

So , I haven't been on in a while. But yesterday I lost one of my best friends. We started talking the beginning of this month when he was sick, and became really close in that time. We clicked easily. We were going to hang out sometime soon and meet up....




I messaged him saying hey, and he said to text him he was going to lay down. I laughed and said text me tomorrow. Well the next day I went to his page and saw a RIP post..and texted him crying, telling him to tell me he was ok....his aunt texted back saying it wasn't a joke, that he was gone. I cried for hours , and I've had a migraine since. I kept trying to text him yesterday, and then I would remember. I miss him  a lot, it's crazy. I hate this disease. 


Breathe Easy Jesse <3

..ugh

Getting out the hospital and being sick 3 days later.....yeah.

Ports

So, I had to get my port redone tonight. Well, the needle. They took the needle out and I had a shower (AHHH SOO AMAZING, you can't get the site wet at all, so it's reallyy hard to take a shower) and then they had to put another needle  in. Usually, it doesn't hurt, but it had me in tears. I was in so much pain. They aren't sure why, but it doesn't usually hurt that bad. So it's finally done, and it's feeling better.


Ports are like miracle workers for CFers. Can be. I used to get PICCs a lot. A PICC is like an IV. But it's longer. Instead of a little length, it's a lot longer. It goes from my elbow to my heart basically.  A med line isn't quite as long. More in-between.


A lot of us use PICCS, because an IV doesn't really work. The medicine we use is so strong, it can burn. It used to sting/burn me. But being put under for a PICC isn't really helpful. I either get put under, or they sedate me. I think they do either one, cause I remember getting anesthesia, or getting the medicine. When I get put under, they put a tube down my throat to help me breathe. Every medical show I have watched, when the patient stops breathing, they do that...yeah...I felt good when I realized that... (-.-) not. Anyways, when I wake up from being put under, I can't breathe. I feel worse. Everything kind of drains and gets stuck, and it is REALLY hard to breathe then. So I have to lay back down and wait for someone to come with a treatment before I sit up again. Also, the more they put you under, the harder it is to wake up they told me. So..PORT IT IS!


I have HORRIBLE veins. Like, I'm not kidding. It took an hour and a half to get an IV started. When they tried to just get blood..they couldn't. So that's when we decided to go for a port. It was very painful at first, but now I don't notice it. I have 2 scars, both are almost gone. One was like a bubble, its smaller now. The other was this long scar, it hurts if they put tape on it. But it's almost gone. It's still pink..a year later. But whatever. 


When they say they have to draw blood for antibiotic test (to see how much is in your blood) they can't use the port. Because it is an access site, and it's where the antibiotic goes in. Kind of like...idk..testing a Dam for water..obviously you are going to find water....So they have to draw blood from somewhere else..I laugh. I tell them good luck and hand them my hand. It's the best spot. If you can't find a spot in my hand, you're screwed. 

New layout

So , I changed my blog a little. I did like this one a lot. It almost reminds me of smoke, and it's purple. The smoke reminds me of my nebulizer, one of my treatments.  I don't exactly like purple, but I like THIS purple colour. Purple is also the colour of CF. So, wear purple this month!! And Anyways, there will ONLY be 2 post on the main page. To look at the older post either scroll to the end and click  "older post" or on the side it has the months and you click a month. So yeah, just so you know. I hope you like it, let me know what you think?

Breathe Easy

We lost another one today. I went on facebook and saw someones status. I was hoping it wasn't her, but it was. I thought she was recovering, the last status I saw of hers she was doing fine, going home. I didn't see her other one saying she wasn't well. Her name is Melissa Tweedy. We are going to miss her a lot. So, that was a really bad part of my day. But I know she's watching over us, and she is breathing now.

BREATHE EASY MELISSA <3

Day 2

So I will be staying over the weekend, "try to get as healthy as possible, " as my mother put it. But I just got up about an hour ago. I didn't fall asleep until 6am, and every 5 minutes a doctor comes in. When I do sleep well, it's like NO one comes in. Seriously? And the doctors who came in this morning...ugh. So the dude comes in ten mins after I fell asleep, and he's like you will probably go home Thursday. I was like well Chicano, (my doc this week) said I might stay over the weekend to get the full 10 days. And he goes, well I think we are only doing 7. We don't want you to get resistant to the medication. AND then he goes, the normal run is 7-10 days. I was like yes..10 days(that's what I saidddd!).... He left and I started to laugh..seriously? Did he read my file? I have been on these meds almost every month. I know CFers who go for MONTHS at a time on these. I was like..wow. 


SO THEN, the chick comes in. I fell asleep while she was talking yesterday. She talks so fast, I mean not faster then me, but fast. And a  LOT. 
I have this problem, when I am reallyy tired I won't remember who comes in, or what they say. So I only remember a little of the conversation. It was like, well you'll probably go home tomorrow, its 7 days on Wens . I said no , Thursday. She was like, no it's Wens. If I wasn't so tired, I would have counted on my fingers to explain. And she's a doctor? LOL. Right...nice try, play again.
So, Chicano comes in later. And he said I can do 7, or 10. And we agreed to try and get as much antibiotics as possible,and go for the ten. He did also say that if after the 7 days, if I wanted to go home, I could. Which was cool. I like him, he's pretty awesome. And his accent, he's from...Argentina? So, I love when he talks. He reminds me of my one Spanish teachers. All the nurses say he has an awesome accent also, and that when he answers the phone he goes "Ello, dis is Chicano," in his Spanish accent.


Anywayss, it's day 2 of the month. So , we need to spread the word out. I mean, not just this month. But there is probably a lot more going on for CF this month than any others. 


I posted on fb last night for my friends and family to see if anyone wanted a link. And a lot of people do. It was really nice, it made me smile. I know my family is there for me always, and they want to read about this. A few CFers do too, and I have over 70 page views right now, and I haven't even sent the link to anyone in my family but one person. And I know she reads it(: To follow the blog, I think you need to use your email and click somewhere that says "follow"..or subscribe? I really don't know. I am following two other blogs, and I have no idea how I did that....so I can look up directions on Google and post them if anyone wants.  I have a CF mom who read my blog last night, she said it helps her know a little more about what her son goes through. He's 12. 


So, yeah...OH WAIT. The documentary is going to be on at 9pm, May 3! Please watch! I am going to get the DVD (hospital channels don't have it, but I am asking around if any rooms do have it somewhere in this place) so, let me know what you think of it!

CF MONTH

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." 

After Prom

Aside for much NOT needed drama this weekend, it was pretty amazing. 
I did have to see my father, and stepmother. But that is a story for ANOTHER day. And a long one. A bunch of memories that I don't want to think about again tonight. But anyways, prom was fun. We all looked amazing! I saw so many friends, and danced with so many people. Even an old crush(; And saw my best friends. I will be going back very soon to have an amazing weekend again, I hope. And hopefully without the drama. I am now ready to go in the hospital.


Within the week I will probably go in, so I'll see. But I really should try and sleep, since I haven't been the last few days really. I will be calling my doctors soon, and seeing my best friends soon too I hope. So ready for graduation! And made a few good friends this weekend. And saw my baby sister the first time. It was, pretty nice. 

ROAD TRIP

Tomorrow I will be driving 4 HOURS to prom, and having the time of my life!! I get to see all my friends, and my baby sister for the first time. I am nervous, but I can't wait! It's PROM! But, I know as soon as I get home what will be waiting for me. 


I'm in the process of packing a million, bajillion , medications. And Bactrum, an antibiotic I am on. This antibiotic works wonders for like..4 days. If it's combined with IV , it works. But it doesn't seem to work by itself. So when I get back..hospitalization ...for me. I am just excited all over. I can look for another job, besides my babysitting. Get school back on track, GRADUATE, and get a pass to the rec center to start working out and swimming. Excited? YES! I am worried about school, 38 absences in one class. My last class on A days. I am alllwayys sick by then. It's after my cooking class...maybe that doesn't help? But I want to be a chef, so that would suck. And being hospitalized almost every month this year...it's crazy. I'm just ...excited. A baseball game, fireworks, PROMM, Ruby Tuesday with the best friend, sleepover!! And driving with a radio blasting..plus probably going to get lost a few times, but no biggie I don't think.(and yes, I have GPS on my phone...) I haven't been this excited in a while, I'm just praying to God that it all works out. He's been good to me always, so I can't wait to see what He has in store for me this weekend!

Missing Prom

I'm sick. Really sick right now. I'm feeling better the last two day, but truthfully I should have been hospitalized a few days ago. Except, prom is in a few days. I am driving four hours away to see all my friends one last time. I almost missed it. I was going to tell the docs that either I need to be out by this Thursday, or just wait. They called an antibiotic in, and I'll probably be hospitalized after prom. I've missed so many dances and events at school because I was hospitalized. 


I'm debating college right now. Do I really want to risk paying more because I get sick and restart a class? I want to go to college, I'd be the first in my family to go right out of high school. My parents went in their 40s. So, Idk. I guess I'll see what happens. I thought about just starting in a bakery, maybe I'll do that. But I think college would  be a smart option. But I can't wait for prom this weekend. 


How did I spend my last spring break in high school? SICK. Coughing up green crap , barley breathing , worrying about making it to prom. Awesome, huh? If you get a vacation, you get sick It's something that happens to us all. If you aren't , you are lucky. Time to do some more medications....

Not sleeping.

I'm up , late, again. It's not really surprising at all. I don't sleep well. Apparently it IS a CF thing, but I had a sleep study done. The technician said that she did  a study on CFers and sleep. A lot of us don't sleep for absolutely no reason. We just don't sleep. How does it work for school? It doesn't , at all. I hate falling asleep in class. It could be medications, it could be something more serious. 


To do this sleep study, I was hooked up to more wires then I could count, a night camera that could see me close my eyes from halfway across the room on the ceiling, and a listening device that could hear me grind my teeth from across the room next to the camera. They put those sticky pads all over you, and you can't move without knocking or unplugging something. I do NOT  want to even dream about what would have happened if I had to pee...thankfully I didn't. Then , they put something over my face so that I wouldn't knock out the wires in my hair, a tube in my nose, and told me to SLEEP. Yeah...sleep? 


Thankfully I hadn't slept in days, so I passes out. But every time I rolled over I woke up, the door opened I woke up, or anything...I woke up. So crappy night of sleep. Then I was woken up at 5am to be unhooked and kicked  out. It was one AMAZING night...(did you catch the sarcasm?) 


I'm up a lot, and I always look like I haven't slept. I function ok usually, but I'm tired all the time. I'm easily distracted and fall asleep so easily in the day. But lets try to sleep again, goodnight. 

SmokeJumper

Fire. I love fires. The colour, the feel. I love to start them, to watch them, the smell, to roast marshmallows and make s'mores. I always had a dream of being a firefighter, and then one day becoming a pyrotechnician or even a head fire-chief who figures out how the fire starts. .

I saw a movie once about SmokeJumpers, I don't remember the name but I remember the movie. Since then, I wanted to do that. I love being in the air, and always have wanted to sky dive. So a skydiver and a firefighter mixed? It was a dream job for me. I would LOVE to parachute into a fire and put it out. But for a CFer, that is not possible. I have coughing fits when someone wears perfume and walks by me on the bus. My mom has to wait until we get out the car to wear whatever spray she wants. Really strong air fresheners can give me an attack. Fire smoke? Forget about it. But I found passion in something else: Cooking.

Having this illness, you need a very high calorie diet. You have to have like, a million calories a day. I am a very picky eater, it's crazy.I started to cook my own foods, and found out I was amazing at it. I can bake very well, and it comes pretty easily to me.I will be going to college next year to start my culinary program. And then I will open a restaurant one day, maybe in another country like Puerto Rico. Restaurants are crazy, there is always something different every day and that's what I love.

To begin...

My name is Joelle Marie. I do not use my last name for personal reasons, ever. I am 17, a senior in high school, and on my way to college in a few months. I have Cystic Fibrosis. My blog will mainly be about that, the struggles we go through, and the struggles I myself go through. A couple things I might refer to. A Cyster is a CF Female. A Fibro is a CF Male.  We just lost another Cyster, Kelsey Savage, and I'm pretty sure she was around my age. It's really hard when someone dies from the same thing you have, knowing you will probably have the same fate one day. Cystic Fibrosis is the number one terminal genetic illness. Meaning it will most likely kill you, and it is also genetic, so you get it from your parents, it's NOT contagious. 


I don't really know a lot about much, but I know random facts, and I know CF. There is no cure yet, but they are close. But people are still dying because we are not there yet. 


I can't be sure who will be reading this, whether family will be or not. But I won't  not talk about stuff because people are reading it. Of course I've always been pretty blunt. So I just got home from babysitting three of the prettiest girls in the world, and I am going to say goodnight, go to bed. It's about 12:15am. I haven't had more then 3 hours of sleep in about 2 weeks. I'll explain that later though. So lets toss and turn for a few hours, and then pass out. Busy weekend, friends to see, kids to watch. Goodnight all. 


BREATHE EASY NOW KELSEY <3