The Joys of having CF

The Joys of having CF

Thursday, May 27, 2010


I'm not a huge Miley Cyrus(Hannah Montana)fan, but a few weeks ago I saw the Hannah Montana movie. I must say it was VERY good. I particularly liked the last two scenes with the final two songs. The first song It's the Climb had amazing lyrics. The song goes like this;
I can almost see it, that dream i'm dreamin but, there's a voice inside my head sayin, you'll never reach it. every step im takin every move i make feels lost with no direction, my faith is shakin, but i, i gotta keep tryin i gotta keep my head held high

there's always gonna be another mountain im always gonna wanna make it move always gonna be an uphill battle and sometimes im gonna have to lose it aint about how fast i get there aint about whats waitin on the other side its the climb

the struggles im facing the chances im taking sometimes might knock me down but no im not breaking i may not know it but these are the moments that im gonna remember most yeah just gotta keep goin and i i got be strong gotta keep on pushin on cuz

theres always gonna be another mountain im always gonna wanna make it move always gonna be an uphill battle sometimes im gonna have to lose aint about how fast i get there aint about whats waitin on the other side its the climb

theres always gonna be another mountain im always gonna wanna make it move always gonna be an uphill battle sometimes im gonna have to lose aint about how fast i get there aint about whats waitin on the other side its the climb

keep on movin keep climbin keep the faith babe its all about its all about the climb keep the faith keep your faith

~~I just love the meaning to that song. It touches my heart so deaply and I listen to this song when I have a bad day, or need to remember, that obstacles are going to get in the way, just like CF, but you have to learn it's all part of the journey, because life's a climb, and the climb is what makes us a stronger person. Just like CF.

Remember: ~Life's a Climb, but the view is GREAT~

The Second song I liked, because it reminded me that no matter how old you get, no matter what problems you face, "You Will Always Find Your Way Back Home". Enjoy the lyrics;
You wake up it's raining and its Monday
looks like one of those rough days
times up your late again so get out the door
sometimes you feel like running
find a whole new life and jump in
let go get up and hit the dance floor
when the lights go down its the ending of the show
and your feeling like you've got no where to go
don't you know

you can change your hair. you can change clothes
you can change your mind , thats just the way it goes
you can say goodbye and you can say hello
but you'll always find your way back home
you can change your style you can change your jeans
you can learn to fly and you chase your dreams
you can laugh and cry but everybody knows
you'll always find your way back home

your best friends your little home town
waiting up where ever you go now
you know that you can always turn around
cuz' this world is big and its crazy
and this girl is thinking that maybe
that this life is what some people dream about
cuz' when I'm feeling down
and I'm all alone
I've always got a place were i can go
cuz' i know

you can change your hair. you can change clothes
you can change your mind , thats just the way it goes
you can say goodbye and you can say hello
but you'll always find your way back home
you can change your style you can change your jeans
you can learn to fly and you chase your dreams
you can laugh and cry but everybody knows
you'll always find your way back home

and they know exactly who you are
where the real you is a superstar
you know its never to far away

you can change your hair. you can change clothes
you can change your mind , thats just the way it goes
you can say goodbye and you can say hello
but you'll always find your way back home

you can change your hair. you can change clothes
you can change your mind , thats just the way it goes
you can say goodbye and you can say hello
but you'll always find your way back home

you can change your style you can change your jeans
you can learn to fly and you chase your dreams
you can laugh and cry but everybody knows
you'll always find your way back home

Remember: ~No matter what happens in your life, you can ALWAYS find your way back home~

Monday, May 24, 2010

Great News!

I was talking with a friend of mine who has Cystic Fibrosis, and she said that it is true that there will probably be a cure for Cystic Fibrosis in the next couple years. As I had mentioned in one of the other posts there's a few steps/phases when researchers test a drug, and it's in phase 3 of 4. Now, my friend who has Cystic Fibrosis she is in the year long study for the drug and she said that it will most likely be the cure! That's FANTASTIC! I just keep thinking that baby's who have Cystic Fibrosis may never know that they had Cystic Fibrosis. I think that's just so Amazing!! This is going to be a great year(s)!!

Oh, and my vacation to Kentucky was great!!

Thursday, May 20, 2010

CF goes on Vacation

So, you're probably thinking it's a goofy title "CF goes on Vacation", but it's true. You see I'm in Kentucky for a mini vacation from (Friday-Sunday), and my parents have some meetings with their business, and as I get older and start packing my own things, you realize that wherever you go, CF is always with you. I have to make a list of the things to remember so I make sure I bring EVERYTHING! I need for the few days. My list for this trip consisted of:
*VEST machine
*VEST (to wear)
*VEST (hoses)
*Compressor(for my inhailed medicines)
*(2) Mist Cups
*Mask for Mist Cups
*6 Tobi Viles
*6 Pulmozime Viles
*8 Sailine Viles
*Advair Puffer
*Albuteral Puffer
*Chamber for the Puffers
*Flonase nose spray
*Vitamin D pills
*Enzymes (Pancreacarb MS-16)

Now, I believe that was everything that was on my list. Now when you have CF, all of that eventually becomes a routine and very easy. Now, I make sure I bring all this stuff so my Lungs & Me stay healthy. I hope you remember that when you go on vacation, so does your CF and don't you want to stay healthy? Well, I hope this post helps you to decide that if you don't take your medicines with you when you travel because it takes up to much room, or you want to just have fun. You should rethink that next time, because if you go just a few days without any medicine, you're hurting your OWN body. Think about that. Now while I'm on vacation there is a few extra things I'm going to do to help my body.
1) I'm going to go swimming(which is a GREAT workout for your lungs)
2) Instead of taking the car everywhere we go, we're going to walk to different places.
Those are just some of the little things you can do to help your body stay healthy. Have a GOOD HEALTHY WEEKEND!!!

Monday, May 17, 2010

Be an Organ Donor

I would like to do this post on Organ Donations. Now, I want to encourage everybody to be an organ donor. I think that before you make your decision to be an organ donor or to not be an organ donor, I think you need to ask yourself a few questions:
*Do I have anything to loose? NO
*If something happened to me(you) or a family ,would I(you) want someone else to be able to live longer?
*Do you(I) know anybody that may be waiting for some kind of transplant, and are just waiting for a donor?
and the most important one:
*If you(I) needed a transplant, would you(I) want someone to help you?
Now, I am a big hitter for being an Organ Donor, because with me having CF, I know how much some people's LIFE depends on organ donors. If someone needs a lung transplant, they can't get one, unless there's a donor. That's why I feel so strongly about being a organ donor. So, please think about those questions, and ask yourself, "if I was in need of a transplant or anything, would I want someone to help me"

Thursday, May 13, 2010


I love CF. I think CF is one of the best things that's ever happened to me. I think it's one of the best things that's ever happend to me because it has made me a stronger person. It's taught me how not to be afraid. It's taught me how to help others who are having a hard time with things, such as having CF. It's made me appreciate what Doctors and Nurses do for patients. They have helped me so much, and I appreciate each and every Doctor and Nurse I've had, and I believe that's part of the reason I want to be a RN and an EMT Paramedic, because I just love helping people. Those are just some of the things CF has taught me.
CF also comes with some down falls such as: hospital stays, PICC lines etc...but I don't mind anymore. In fact, I sometimes call going to the hospital my "mini vacation". It's become routine for me, usually one or two times a year I have to go in for what they call a "tune up", but that's okay, that's how I stay healthy. CF, I believe, has made me the person I am today, and the person I will be in the future.
Now here are some pictures:

My PICC Lines: (September 09)

January 2010 (before I got my PICC line, I had my temporary IV in my hand)

Tuesday, May 11, 2010

I Have A Dream

I was thinking about freedom the other day, and I read Martin Luther King Jr's "I Have A Dream" speech, and I fell in love with it. I've heard people read it, and I heard it in school, but I never actually read it, and I never noticed the inspiring words that he spoke. It really makes me take a look at all the privelages we have in our country today, and it took real heros like Martin Luther King Jr, and Rosa Parks, to help our country become what it is today, and I now realize that I've been taking our country's freedom for granted and I now know that I should appreciate everything that we have, because not that long ago, our country wasn't that free, and I hope you all appreciate the freedom you have and the freedom our country has. So, here is Martin Luther King Jr's "I Have a Dream" speech:

I Have A Dream;

I am happy to join with you today in what will go down in history as the greatest demonstration for freedom in the history of our nation.

Five score years ago, a great American, in whose symbolic shadow we stand, signed the Emancipation Proclamation. This momentous decree came as a great beacon light of hope to millions of Negro slaves, who had been seared in the flames of withering injustice. It came as a joyous daybreak to end the long night of captivity. But one hundred years later, we must face the tragic fact that the Negro is still not free. One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination.

One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize an appalling condition.

In a sense we have come to our nation�s Capital to cash a check. When the architects of our republic wrote the magnificent words of the Constitution and the Declaration of Independence, they were signing a promissory note to which every American was to fall heir.

This note was a promise that all men would be guaranteed the inalienable rights of life, liberty, and the pursuit of happiness.

It is obvious today that America has defaulted on this promissory note insofar as her citizens of color are concerned. Instead of honoring this sacred obligation, America has given the Negro a bad check, a check which has come back marked "insufficient funds."

But we refuse to believe that the bank of justice is bankrupt. We refuse to believe that there are insufficient funds in the great vaults of opportunity of this nation. So we have come to cash this check, a check that will give us upon demand the riches of freedom and the security of justice.

We have also come to this hallowed spot to remind America of the fierce urgency of Now. This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism.

Now is the time to make real the promises of democracy.

Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice.

Now is the time to open the doors of opportunity to all God�s children.

Now is the time to lift our nation from the quicksands of racial injustice to the solid rock of brotherhood.

It would be fatal for the nation to overlook the urgency of the moment and to underestimate the determination of the Negro. This sweltering summer of the Negro�s legitimate discontent will not pass until there is an invigorating autumn of freedom and equality. Nineteen sixty-three is not an end but a beginning. Those who hope that the Negro needed to blow off steam and will now be content will have a rude awakening if the nation returns to business as usual.

There will be neither rest nor tranquility in America until the Negro is granted his citizenship rights. The whirlwinds of revolt will continue to shake the foundations of our nation until the bright day of justice emerges.

But there is something that I must say to my people who stand on the warm threshold which leads into the palace of justice. In the process of gaining our rightful place, we must not be guilty of wrong deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred. We must forever conduct our struggle on the high plane of dignity and discipline. We must not allow our creative protest to degenerate into physical violence. Again and again we must rise to the majestic heights of meeting physical force with soul force. The marvelous new militancy which has engulfed the Negro community must not lead us to a distrust of all white people, for many of our white brothers, as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny and their freedom is inextricably bound to our freedom. We cannot walk alone.

And as we walk, we must make the pledge that we shall march ahead. We cannot turn back. There are those who are asking the devotees of civil rights, "When will you be satisfied?" We can never be satisfied as long as the Negro is the victim of the unspeakable horrors of police brutality. We can never be satisfied as long as our bodies, heavy with the fatigue of travel, cannot gain lodging in the motels of the highways and the hotels of the cities.

We cannot be satisfied as long as the Negro�s basic mobility is from a smaller ghetto to a larger one.

We cannot be satisfied as long as a Negro in Mississippi cannot vote, and a Negro in New York believes he has nothing for which to vote.

No, no we are not satisfied and we will not be satisfied until justice rolls down like waters and righteousness like a mighty stream.

I am not unmindful that some of you have come here out of great trials and tribulations. Some of you have come fresh from narrow jail cells. Some of you have come from areas where your quest for freedom left you battered by storms of persecutions and staggered by the winds of police brutality. You have been the veterans of creative suffering. Continue to work with the faith that unearned suffering is redemptive.

Go back to Mississippi, go back to Alabama, go back to South Carolina, go back to Georgia, go back to Louisiana, go back to the slums and ghettos of our modern cities, knowing that somehow this situation can and will be changed.

Let us not wallow in the valley of despair. I say to you today, my friends, that in spite of the difficulties and frustrations of the moment, I still have a dream.

It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and live out the true meaning of its creed. "We hold these truths to be self-evident that all men are created equal."

I have a dream that one day out on the red hills of Georgia the sons of former slaves and the sons of former slaveowners will be able to sit down together at the table of brotherhood.

I have a dream that one day even the state of Mississippi, a desert state sweltering with the heat and injustice of oppression, will be transformed into an oasis of freedom and justice.

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.

I have a dream today.

I have a dream that one day the state of Alabama, whose governor�s lips are presently dripping with the words of interposition and nullification, will be transformed into a situation where little black boys and black girls will be able to join hands with little white boys and white girls and walk together as sisters and brothers.

I have a dream today.

I have a dream that one day every valley shall be exalted, every hill and mountain shall be made low, the rough places will be made plains and the crooked places will be made straight and the glory of the Lord shall be revealed and all flesh shall see it together.

This is our hope. This is the faith with which I return to the South. With this faith we will be able to hew out of the mountain of despair a stone of hope.

With this faith we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood.

With this faith we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.

This will be the day when all of God�s children will be able to sing with new meaning "My country �tis of thee, sweet land of liberty, of thee I sing. Land where my fathers died, land of the Pilgrim�s pride, from every mountainside, let freedom ring!"

And if America is to be a great nation, this must become true. So let freedom ring from the prodigious hilltops of New Hampshire. Let freedom ring from the mighty mountains of New York.

Let freedom ring from the heightening Alleghenies of Pennsylvania.

Let freedom ring from the snow-capped Rockies of Colorado.

Let freedom ring from the curvaceous peaks of California.

But not only that, let freedom, ring from Stone Mountain of Georgia.

Let freedom ring from Lookout Mountain of Tennessee.

Let freedom ring from every hill and molehill of Mississippi. From every mountainside, let freedom ring.

When we let freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God�s children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual, "Free at last, free at last. Thank God Almighty, we are free at last."

Monday, May 10, 2010

My One Love

Now, my one is from when I was still in Public School. I am homeschooled now, and I absolutely love it, i'm already done with my freshman year of high school, and i'm probably going to be starting sophmore year sometime in June. Anyway, when I was in school I was what they called the "band geek", I was absolutely in love with band. I played the Bari Saxophone in the High School Marching Band, Jazz Band, Pep Band, and Concert Band. It was the best thing in the world to me. I absolutely loved it.
Now, from 5th grade until 8th grade I played the Alto Saxophone, and in 8th grade I started playing the Bari Saxophone. I played that until December 2009 or January 2010(I can't remember). Anyways, now that I'm homeschooled I don't play the saxophone. Now, i'm always asked if I miss playing the Bari Saxophone, my answer is yes, BUT I absolutely LOVE being homeschooled, I wouldn't change it for anything, but I still have my Alto Saxophone at home, so I sometimes play that. I just wanted to do this post to thank my amazing band teacher, Ms. Novak for making band great for me the years that I played. Thank You VERY much Ms. Novak. You're a great teacher.

Saturday, May 8, 2010

Lazy Day

Do you ever have one of those days where you just have a "lazy day", where you stay in your pj's all day, do nothing, absolutely nothing even though you have 2 baskets of clothes to fold, and a puppy to play with. Well today was my lazy day. My puppy "Bo" and I played on the computer, watched movies, ate a whole pizza(I ate the pizza not the dog, he had dog food & dog treats), and did absolutely nothing else. It turned out to be the perfect day. I wish these days were more often. While I had my lazy day, I found another quote that I just love, I'll end with it, and I hope tomorrow every mom has a great mothers day. Have a good rest of the weekend.

"money doesn't make you rich, life makes you rich"

Friday, May 7, 2010

Is CF a Love or Hate Relationship?

Now you're all probably thinking i'm nuts about calling CF a relationship, and some of you are probably thinking it's a "hate" relationship. Well, for me personally I think it's a Love Relationship. I love having CF! I honestly do. It's a part of me that I will have forever, even when there is a cure for it. I think of it as a part of me that I will always have and nothing is going to change that. Now I'm probably babbling, but here's my point.
Everybody has the right to have an open mind about CF. You may "hate" it, or you may have just learned to live with it.
Well I call it a relationship, because I believe a relationship is something that you will have forever and that will last a lifetime. I truely believe that is what CF is. I know you may not like it, and yes I will agree, sometimes it's not all so fun, like being sick etc...but I want you to try to remember that you are NEVER given more than you can handle, and I think that if you have CF you are a very strong person.
Now, when there is a cure for CF, and whatever the cure may be, probably some sort of pill, and when you have that medicine, you may want to forget that you ever had CF, and that's totally okay, but I want you to remember, that no matter what, CF will always be a part of you, and it will be something you will have/remember for the rest of your life, and I hope that whenever you sometimes get mad at having CF, I hope you sit and remember all the life lessons CF has given & tought you, because "you are never given more than you can handle", and remember CF is part of your life, and I hope you don't ever regret having CF, because CF believe it or not, I believe has tought you many life lessons and made you a stronger person.
Remember; CF isn't just more than a burden in your life, because it's not, it's just a friend/relationship that will always be a part of you forever and you have to just accept that. CF isn't a bad thing, so don't hate it, learn to just live with it.

Thursday, May 6, 2010

GREAT Appointment

So, yesterday (Wednesday) I had a Dr. Appt in Minnesota at my specialist, and it was GREAT,not only did I have my new doctor, but my breathing levels are up, they are at my ultimate best right now. I'm so excited.
Then I asked my Doctor about the medicine I was told about that could be the cure for the basic CF gene, and she said it was true. You see, in the research process of medicines there are 4 stages; Stage 1 & 2 is uaually just a few days/weeks/months, tested only in adults to make sure there is no sideffects, then in Stage 3 (which is what this med is in) is where they give it to adults & some kids and have them try the medicine for a whole year, and if it works then it goes into the final Stage 4. Now it will probably take anywheres from 3-5 years, by the time Stage 3 is done, then Stage 4, and i'm now sure exactly when the FDA has to approve it, it might be in Stage 4.
Now, to see if the medicine is helping treat the CF gene, you have to have a sweat test, and what a sweat test is, it is a test where I believe it determines if you have CF, and what deffect you have(there are a few different kinds of gene deffects). Now when they are testing the med/researching, the people that are taking the med, they will have to take a sweat test at the end of the research (it depends what stage it's in), and if at the end of the research (however long it is), if it shows up that you "don't have CF" that means that it corrected the basic deffect of CF that you have in your body.
Now I hope that that made sence. I'm not an expert at it by anymeans, but that's how I was explained, and I think it's simple enough to understand instead of in medical terms =) If you have any questions, just leave me a comment.

Wednesday, May 5, 2010

I Hope Your Dreams Stay Big

I'm going to share some of my top dreams that I have, and I WILL reach someday.

6. Living on the Gulf of Mexico

5. Owning a house on the Gulf of Mexico

4. Owning my 3 Favorite cars in the world:
*My Cadillac ESV*

*My Shelby GT500

*My Mustang GT

3. Get Married, and have a Family

2. Become a RN, and an EMT Paramedic

1. Make a Difference in the World, and Help Someone/Somebody

~Now I know that if I keep my determination, and I go out and do the work, I know that I am going to reach all of my Goals and Dreams, and I hope that whatever your Goals and Dreams are, if you want them bad enough, I hope you go out and do the work, and have the determination to go out and reach your Goals and Dreams~

REMEMBER: "I hope your dreams stay big and your worries stay small" -My Wish, Rascal Flatts

Tuesday, May 4, 2010

Temporary Home

I love Carrie Underwoods new song; Temporary Home. When I listen to that song, I truely believe that this is our "temporary home". I believe that we were put on this earth for a reason, a purpose, and a time, and I believe that when God feels our time is done, we go "HOME". So, now that we are here, at our "temporary home", I hope you live your life to the fullest, and make every moment count, until your time here is done.

Monday, May 3, 2010

Remember When...

I have been listening to the song Remember Whenby Alan Jackson, and it got me to thinking, when I get older and start looking back, I want to "remember when" something good happend, or something good I did. Now my question for you is, do you want to live your life so when you "remember when", you remember the good things that happend in your life, and the good things you did, or do you want to remember the not-so good things? It's your choice, but I know, I want to "Remember When".

*btw: i've been getting asked a lot about how to leave a comment, to leave a comment you have to have a Google account. Its FREE, all you have to do is click Sign In in the upper right hand corner, and create an account, and there should be an option to create an account using your current email, and just making a password. Hope it helps*