The Joys of having CF

The Joys of having CF

Tuesday, December 28, 2010

Different Life

I've often thought what my life would be like if I didn't have CF. I've made a list of things on how my life would be w/o CF.

Top 10 things I could do w/o having CF:
*No Nebs
*No Pills
*No extra 45-60 minute extra therapies 2 times a day(everyday)
*No getting up an hour early to do something so I can fit in therapies
*No hospital visits
*No going to the Doctor every 3 months
*No having to bring all vest equipment, and meds on vacation or to sleep overs etc
*No pancrease or lung issues
*I could take a Clean Wonderful Breath of Air

Now I want to share the Wonderful Top 10 things I LOVE about having CF

The Top 10 advantages I have with having CF:
*Becoming a bigger believer in God
*Meeting wonderful Doctors, Nurses & Friends
*Having a wonderful support team behind me every step of the way
*Have the strength to know what some child or people are going through, and are able to help them through it
*Helping Others, and trying to make a difference in people's lives
*Writing books, to help people
*Being an understanding person
*Knowing the true meaning of, "life's not measured by the number of breaths we take, but by the moments that take our breath away"
*Knowing the true meaning of Life, knowing how to live my life to the fullest EVERYDAY!

This is a list I've come up with, and I would NEVER wish my life to be any other way than it would be with out CF. I love having CF and would never wish my life to be any other way. I am so blessed beyond words to be so blessed with having CF.

Friday, December 24, 2010

Merry Christmas!

I just want to wish everyone a VERY Merry Christmas

Tuesday, December 21, 2010

CF Jingle :)

I got an email today from the Cystic Fibrosis Foundation (it was a Holiday Greetings), and there was this cute little jingle/song included in the email and I thought you'd enjoy it.
It is supposed to be sung to the tune of Jingle Bells :) Enjoy!!

CFF, CFF, working everyday
Raising Funds and blowing trails to blow CF away
CFF, CFF, working everyday
Research in the past ten years has really paved the way!

Since they've mapped the gene, the future's getting bright
Helping all those with CF to really win their fight
When dedicated Docs and drug research align
More than 30 therapies are in the drug pipeline.

CFF, CFF, working everyday
Raising Funds and blowing trails to blow CF away
CFF, CFF, working everyday
Research in the past ten years has really paved the way!

VX-770 and Azithromycin
Hypertonic Saline, VX-809, and Cayston
All the strides we've made, each single step is sweet
Hoping in the next ten years, it's CF we will beat.

CFF, CFF, working everyday
Raising Funds and blowing trails to blow CF away
CFF, CFF, working everyday
Research in the past ten years has really paved the way!

Sunday, December 19, 2010

.....'s hard to believe that Christmas is in 6 days!!! yikes! where has this year gone? this year seems as though it has gone by right before my eyes.
today(Sunday) we had Christmas with my mom's side of the family, her brother, my aunt, their son, and my 2 sisters. my grandparents weren't there because they moved to Florida. oh how I would love to spend Christmas in the warm weather, but like I always say, it isn't Christmas without snow(but it can leave the next day) :)
on Friday(Christmas Eve) we will be going to church, because hopefully our church is having their pagent. then Saturday we go to my dad's parents :)
this year has gone so quick it's hard to keep track of where the time went. i believe 2011 is going to be the year we all remember. let's make good memories in 2011, and make it one of the best years ever!!
this year I have had a saying/quote stuck in my head, and it is going to be my motto for 2011, it comes from Bon Jovi's song Livin' on a Prayer. My motto for 2011 is going to be, "you live for the fight when it's all that you've got".
I hope everybody makes 2011 one of the best years possible. Let's make memories that will last a lifetime. Let's make 2011 known for something-like the year to thrive!
If I don't post before Christmas I hope everybody has a wonderful holiday :)

"you live for the fight when it's all that you've got"

Christmas last year, from left to right: Steph(sister), Me & Bo, Sam(sister) and Riley(cousin)

Tuesday, December 14, 2010

We're going to Bora Bora in....

March!!! we got the phone call yesterday(Monday) that the trip will be 9 days(2 days for travel). 7 days total in Bora Bora. We are going to leave at night, so then we get to Bora Bora in the morning(their time) or something like that :)
We are looking at going sometime in March. I'm so excited. It's going to be so amazing.
So I can't wait till the time gets closer, then we can schedule my hair appt(i must get it colored for Bora Bora) haha. Then a group of my friends and I can get mani/pedi's(and try to convince my mom to get her fake nails again). Oh, and did I mention shopping?!?!. We must get some new summer clothes.
I'm so excited to be able to relax with my family and enjoy each other. It is going to be such a memorable moment. Memories will be created-in paradise. We are going to one of the most beautiful islands in the world. This trip is going to be amazing, but I wish all of you could expierence this feeling. It seems not real. I think about it all the time, but it still doesn't seem real. It hasn't set in yet. I just have this feeling in my heart that I wish everybody could feel, a feeling of honor, and excitment. Even with planning the trip it still doesn't seem real. I'm just so amazed and so honored, and I hope everyone gets to have their one wish come true one day. because it's magical. It's a miracle. It's a Dream Come True.

Thursday, December 9, 2010

My Confirmation

Last Sunday(December 5th) I recieved the sacrament of Confirmation, where I am officially considered a member/adult to our church. I got to spend it with my family, and friends. I had an unexpected surprise from my godmother(who lives in Illinois) and her daughter(my cousin). It was a wonderful surprise, and it made my day very special. I just wanted to share some photos from that day with all of you. Oh, and yes there was lots of talking about Bora Bora :) Enjoy!
After Confirmation with my sisters. (left to right: Me(and Bo), Sam, and Steph).

Me and Bo :)

My Cake(we forgot to take a picture before mom cut it) hehe
My sponsor and I with our priest and Bishop. (left to right: my uncle DaWayne-Sponsor, Me, The Bishop, and our priest-Fr. Nathan)
This picture's hard to see, but this is me doing one of the readings during mass.
and lastly the best surprise of all, my aunt and cousin :)

Thursday, December 2, 2010

~Reality hasn't set in yet~

Wow! 24 hours ago I found out that my Make~A~Wish had come true. I will be going to Bora Bora, Tahiti. I'm so excited, but it seems so surreal that i'm actually going. I'm very very excited.
I keep thinking, wow why did God pick me to deserve this. He is so wonderful. I pray every night and thank him for allowing my life to be so wonderful, and I pray for everyone who has CF.
Now is the exciting part, waiting for that phone call or email asking what dates work so they can start planning the trip. I can't wait. I can't wait to go get mani/pedi's before we leave, and get my hair done, and get some new clothes etc...I just wish all of you guys could expierence what this wonderful feeling.
I will definetly keep everybody posted.

Can you believe i'm going there!?!?

Wednesday, December 1, 2010

Did my wish get approved????

YES!!!!!!!!! I'm going to BORA BORA!!! oh, this is just the best day ever! I can't wait to know when we are going. Now they are going to start planning the trip. I'm hoping for January :) when it's very cold here in Wisconsin. hehe. I will keep everyone updated.
Oh...this is the most wonderful time of the year :)