The Joys of having CF

The Joys of having CF

Wednesday, February 23, 2011

378 Hours?

In roughly 378 hours, or 16 days, we will be on our way to Bora Bora. Seems like a long time right? Not really. Starting next week things are going to be getting craz(ier) than normal. We have our hair appt's scheduled, mani/pedi's scheduled, plus we have to get some extra things to bring with us, so we have to do a little shopping, and when I say little I do mean little. And...we still have to get the adapters or converters for my VEST and compresor, since the wattage of my VEST is 300, and the wattage of my compressor(its small) is 200. So our week is going to be a little crazy starting next week. Plus--we have to meet with my wish granters once more, and plan my going away party which will be squeezed in there somewhere. On Wednesday the 2nd, I go to get my hair done :) and then go and hopefully get a swim suit, then on the 6th, my sister and I and maybe my cousin are going to get mani/pedi's(i'm just getting a mani, but they'd be getting both). Then on the 7th, my mom and I go and get pedi's, and she's hopefully getting her fake nails back...oh how I miss those on her. and then we're down to 3 1/2 days after that and we leave. Sounds stressful a little, but it's going to be all FUN!!!! I am so thankful for all the snow we've gotten the past few days because that's making me appreciate my trip more and more, so to all the 8+ inches we've gotten lately...THANK YOU!!! So will write soon.
~God Bless~

Saturday, February 19, 2011

2 1/2 weeks!!!

In about 2 1/2 weeks(20 days) we'll be heading off to Tahiti!!! It's coming up sooo fast. I'm getting really excited! I've been looking at pictures of the place, looking at the activities we're going to be doing and it just doesn't seem real at all. I'm getting very very excited about gettting to feed the sharks and sting rays. My sister and I are going to do that. I am also getting really excited about getting to go pairasailing. I've never done it before. 600 ft in the hair only straped in by a harness and parashute(sp) soooo awesome! If you can't tell I'm kinda a dare devil sometimes, especially when it comes to water sports. Where we're staying in our overwater bungalows, my sister and I have our own hut, and my mom and dad have their own to. It's awesome! I can't even fathom what an amazing time this will be, and I'm so excited to be able to have this adventure. and hey, maybe I'll even get to meet a celebrity with our 6+ hour layover in L.A. :) and hey, maybe i'll even get to meet John Travolta--never know. I just want to include a very peaceful, calm and beautiful picture I found of Tahiti. It's paradise. ~God Bless

Thursday, February 17, 2011

Top 10 Islands to see before you die!?!?

Did you know; that there is a list of 10 islands you should see before you die? I did not know that. As I was reading the list of the top 10 islands to see before you die, I realized I had only heard of a few of them. A little sad huh? Well I wanted to share this list with you, and I hope that in my lifetime I am able to visit all 10. So here's the list:

1) Bali
2) Vieques
3) Easter Island
4) Ischia
5) Chiloe'
6) **Bora Bora**
7) Key West
8) Penang
9) Galapagos
10) Palm Island Dubai

I hope you enjoy the list. Notice the *'s :)
1 down 9 to go!! Maybe this will interest you and you will have to visit some of them. I know it interested my parents and I. Have a great day!!

Wednesday, February 16, 2011

Nitty Gritty

Well we're down to the Nitty Gritty of my Make~A~Wish trip. We got the final flight times, the final plane/travel schedule. We have about a 7 hour lay over in LA before we head to Tahiti. I'm not so sure what we're going to do in an airport for 7 hours, but like I keep saying, it's LA we're bound to see someone famous ;)
I'm getting so excited. Later this week or early next week my wish granters, Scott and Donna, will be calling to get together to go over itinerary(sp?) and events, activities, and plan my wish party :) I am beyond excited.
My mom and I already scheduled our Mani/Pedi's, and my sister and I are going one day for her to get a mani/pedi and me get a pedi. Mom and I are going by a friend of hers so she's getting her fake nails-I love my mom in fake nails :) and a pedi, and i'm just getting a pedi by her.
So we're down to 22 1/2 days and counting patiently. Will keep everyone posted, and I'm just sooo stinkin excited to go to Bora Bora for a trip of a lifetime, and I am definetly coming back with an original black pearl and then a friend of mine, Jill, is going to help me design a ring to put it into. I'm so stoked!!! :) Have a great day/night :)

Sunday, February 13, 2011


Today I decided to do a post on what I am thankful for. Currently my Make~A~Wish trip is only...26 days away!! Going fast I know. I can't believe it myself. But, today I want to tell you all what I am thankful. I am thankful for being a believer in Christ. I know with him all things are possible. I am thankful for my family. I am thankful for all the things they do for me, they are always there for me know matter what. They go out of their way when i am sick to make sure things get done and everything is good. I am thankful for them. I am thankful for my Illness(CF). CF has taught me so much. It has taught me not to take things for granted, and live each and every day to the fullest, and appreciate everything. Through having CF I have met and have so many friends it's just unbelievable and I am thankful for that. I am thankful for my friends and my CF friends for always being there for me. For always knowing just how to cheer me up if i'm down, for sending that text message or email just when I needed it the most, for believing in me when I don't always believe in myself. Thank You. Lastly, I am so thankful for my life. The life has chosen me to live. It may not always be easy, or just a simple walk in the park, but it's my life, and I love it!

Thursday, February 10, 2011

Just Because

Sooo....we are down to 28 days till the trip!! I am getting so excited, and the trip still doesn't seem real. I don't think it will seem real until we are in the airport, or until we are in LA, our final departure place until we hit Tahiti. I am definetly looking forward to the weather. Tahiti today is supposed to be a high of 87, and today it hasn't left -13 all day :( My mom said on her way into town this morning the car said -24. yikes!! This WI weather is sure getting old. I was made to live somewhere with warm weather and an ocean, don't get me wrong I LOVE where we live but quite frankly in the winter Florida's looking better and better all the time. :)

So have a great day, and a picture...just because ;)

Wednesday, February 9, 2011

Awesome Appointment

Well today I had a dr. appt to see if the antibiotics worked from last month(when I had pnemonia), and they worked!! It was a great appointment. Last time the best FEV1(amount of air I can blow out) was 92%. My personal best is 97%. Which is awesome. See my predicted FEV1 is 101%, and how they predict that is, they compare me to somebody identical to me who doesn't have CF, and that's how they get the predicted amount of air I can blow(FEV1). So predicted for me is 101%. My personal best is 97% which is AMAZING for someone who has CF. Last time in January I was down from 97-92%. So that's down 5% which means something's up. So after 28 days of Tobi, and 2 weeeks of Bactrum, upping my vest to 3 times a day, and more excersing, I go in their today and my first blow is 93%, already better, then my second blow was 94%, and my last one, my all time best was 95%. Antibiotics worked...Tahiti here I come!!! I am all healthy! It's looking like so far i'm on track for a hospital free year. :)

So here's what my clinic/hospital look like(there's a bunch more that is not showing on the picture, it's a school campus, research center, clinic, and hospital). Next time I go back to the doctor in May, I will be at a different location(1 exit up) and at a different clinic/hospital. The pediatric center joined with a different clinic(which is great cause then there's more specialists, more dr's, more CF teams etc..) So this was my last visit to this place, until i'm an adult, then I get to go back.

Tuesday, February 8, 2011


Tomorrow(Wednesday February/9/2011) I go to the dr, to redo PFT's and see if their up. Last time my highest was 92%, and my best is 97%. So at my last appt. we figured out I had pnemonia(of course) so I was put on an oral antibiotic(Bactrum) for 2 weeks, and went on Tobi for 28 days. and I have increased my VEST therapies to 3 times a day instead of 2, and started excercising more. So with all that said, i'm praying my PFT's are at least 95%. I know I can do it!! I WILL DO IT!!! My PFT's WILL be 95% or higher!!! I gotta feeling that tomorrow's gonna be a good good day!! So I will update tomorrow when we get back (from the dr. and after meeting one of my very good friends on the way home) to give y0u all the good news.
Make~A~Wish update; I got presents in the mail for Valentines day :) I got a journal, body gel, and a book mark that says "Bon Voyage". They will be contacting us in the next couple weeks to plan my going away party :) So other than that, talk to ya tomorrow...bye

Friday, February 4, 2011

Well...what do you think???

So here is what I purchased about 2 weeks ago :) My parents told me I was a little crazy because of the price...but said if I wanted it I could. I saved my $ and bought this...for Bora Bora of course :) So what do ya think?

It looks better in person...I spent $48 the most i've ever spent for anything(besides my car). But hey, if it's for Bora Bora it's alright :)

Wednesday, February 2, 2011

Almost 4 Months Ago

I was looking through some old photos tonight, and noticed that in 5 days it will be 4 months since my uncle sold his farm. Wow! Has it really been that long? I wanted to share a few photos with you from the day of the auction. It does not seem like 4 months ago already. There's one cow I miss dearly--I named her Mama Red! She was my favorite, and she new her name if I called her. When I could call her name she'd look up and perk her ears to see me :)

Here's some photos from that day.

Me with one of the Cows :)

Me and Mama Red--Take 1

Her heads to big--Take 2

Take 3--Perfect :)


In just 37 days we will be hoping on a plane and leaving the country for 9 days!! I'm stoked!!! Super excited! it's hard to believe that it's only 5 weeks away! Today in Tahiti it will be 87 degrees and here in WI it will be 14!!! March 11th please come quick! These cold days can leave whenever they feel like it, sooner than later would be greatly appreciated :)
I wanted to share a picture of where we're staying the first 5 nights in Bora Bora, and then the place we'll be staying the last 2 nights in Tahiti. We're not sure of where we're staying yet overnight in L.A.
In Bora Bora, the first 5 days we are on a private island located about 5 miles away from Bora Bora, so we'll have to catch a boat to get to Bora Bora--a boat leaves every 5 minutes. Then the last 2 nights we're staying at a resort on Tahiti.

Here is where we'll be staying the first 5 nights on the private island. If you look closely you can see the shore of Bora Bora.

Here is where we will be staying the last 2 nights when we're on Tahiti.