She did it!!!

8 months and 21 days after receiving her new lungs my amazing Cysta Sara crossed the finish line of her very first 1/2 marathon!!! 

Awesome job Sare!! We are ALL so proud of you!!!! Xo

Enlightened Perspective

If you take the time to read these. I promise you'll come away with an enlightened perspective. The subjects covered affect us all on a daily basis: They're written by Andy Rooney, a man who can say so much with so few words.

 

Enjoy.......

I've learned.... That the best classroom in the world is at the feet of an elderly person.

I've learned.... That when you're in love, it shows.

I've learned.... That just one person saying to me, 'You've made my day!' . . . Makes my day.

I've learned.... That having a child fall asleep in your arms is one of the most peaceful feelings in the world.

I've learned.... That being kind is more important than being right.

I've learned.... That you should never say no to a gift from a child.

I've learned.... That I can always pray for someone when I don't have the strength to help him in some other way.

I've learned.... That no matter how serious your life requires you to be, everyone needs a friend to act goofy with.

I've learned.... That sometimes all a person needs is a hand to hold and a heart to understand.

I've learned.... That simple walks with my father around the block on summer nights when I was a child did wonders for me as an adult.

I've learned.... That life is like a roll of toilet paper, The closer it gets to the end, the faster it goes.

I've learned.... That we should be glad God doesn't give us everything we ask for.

I've learned.... That money doesn't buy class.

I've learned.... That it's those small daily happenings that make life so spectacular.

I've learned... That under everyone's hard shell is someone who wants to be appreciated and loved.

I've learned.... That to ignore the facts does not change the facts.

I 've learned.... That when you plan to get even with someone, you are only letting that person continue to hurt you.

I've learned.... That love, not time, heals all wounds.

I've learned.... That the easiest way for me to grow as a person is to surround myself with people smarter than I am.

I've learned... That everyone you meet deserves to be greeted with a smile.

I've learned.... That no one is perfect until you fall in love with them.

I've learned... That life is tough, but I'm tougher..

I've learned.... That opportunities are never lost, someone will take the ones you miss.

I've learned.... That when you harbor bitterness, happiness will dock elsewhere.

I've learned.... That I wish I could have told my Mom that I love her one more time before she passed away.

I've learned.... That one should keep his words both soft and tender, because tomorrow he may have to eat them.

I've learned.... That a smile is an inexpensive way to improve your looks.

I've learned.... That when your newly born grandchild hold your little finger in his little fist, that you're hooked for life.

I've learned.... That everyone wants to live on top of the mountain, but all the happiness and growth occurs while you're climbing it.

I've learned.... That the less time I have to work with, the more things I get done.

2 More Months

UNTIL I TURN 30!!!!!!!!!!!!!!!! :)

Congrats Christy!

Congrats Christy you are now the proud owner of this Love to Breathe painting. You are starting quite the collection. :)

Christy just headed a wine tasting event for the CFF. I sent one of my paintings to her fundraiser, and she was the high bidder on that one too :) Go check out her blog she is the proud momma of two beautiful lil girls and a fur baby named Eddie, her oldest Mackenzie has CF. Christy is doing all she can to make CF stand for Cure Found!!

Rockin Robin

Ok so it snowed all day today, however I saw 8 robins throughout the day. That has to be a good sign from Mother Nature herself that Spring will soon be here. YAY!!!

*PS I can't take credit for this pic.... it was just something I found on the internet... :) *

Seriously Mother Nature?

So all last week we had beautiful weather in the high 60's even some days in the 70's. Last Fri was the first day of Spring, flowers were popping up and trees were blooming. 

Well this is what I woke up to this morning...

I have to shovel today.... UGH!

Happy Birthday Baby Girl

Happy Birthday Lills!!! 

I can't believe my baby girl is 4 years old today, they sure grow up fast. She is such a  lil sweet heart and is quite the snuggler. She is definitely the boss, poor Osc puts up with a lot he is a very good big brother. She is a lil princess!

We have a fun filled day planned... I made them a special breakfast of eggs mixed with a lil bit of their dog food. Now we are off to the dog park and then we are going on a walk with Gramma. I am sure the day will also involve lots of treats! 

She loves her treats!

This is what Lilly does with her baby dolls she can't sleep without them. She has a ton of baby dolls and she loves to cuddle them.

Blogging Auction

Ok after all your requests to do this I thought I would oblige... I had a very hard time choosing which painting to put on here, so I may just have to do this again :)

This is a Love to Breathe painting and it is on a 16x20 gallery wrapped canvas so you can hang it as is, it doesn't need to be framed.  You can bid on it by leaving a comment and who ever is the highest bidder on Wed March 25th will be the proud owner. I'll start the bidding price at $75 a portion of the proceeds will go to the CFF. Last year Love to Breathe raised over $5,000 for the CFF. Remember 90 cents of every dollar goes to funding research for that sought after cure.... Happy bidding :)

Happy St Pattys Day!!!

The Blarney Castle is near Cork Ireland, I went there with my family when I was 13. I climbed to the very top and kissed the stone upside down. I now have the gift of gab or eloquence whatever you prefer. Here are some of my pics from that trip.

For over 200 years, world statesmen, literary giants, and legends of the silver screen have joined the millions of pilgrims climbing the steps to kiss the Blarney Stone and gain the gift of eloquence. Its powers are unquestioned but its story still creates debate.

Me kissing the stone (gotta love my outfit, obviously I had no germ issues when I was lil)

If I had the chance to kiss it today there is no way!!! Supposedly the locals pee on it at night and not to mention think how many lips have been on that. YUCK!!! I can guarantee they don't sanitize it. 

My family had the chance to go back to Ireland for St. Patty's Day 2002. It was right after we had the Olympics in Utah and my Dad went around and collected 12 green Olympic Jackets off the volunteers bodies so that we could all wear them on our trip. There was 12 of us all in the same coat they thought we were a pretty big deal over there :) Below are pics from that trip...

Me on the Big day in a lil cafe by our hotel

My Bro Shane at the Guinness factory! 

Im on a double decker bus getting a tour of Dublin
I loved the all the front doors in Ireland 

Well I told you a lil about my St Patty's day 2007... I had planned this HUGE trip to Ireland with my friend and my Dad was telling everyone about the great deal we found and more and more people wanted to go. So about 20 of my family and friends were all set to go. Well the weekend before the big trip I got really sick. I tried to manage it with oral abx but it was a horrible strain of the flu and it kicked my butt. I ordered O2 for the plane because I was getting so nervous and knew I felt so bad but after 3 days on Abx I wasn't getting any better. So the day we were suppose to leave my family and friends left for the airport and My mom took me up to "My Ireland". I was SO bummed and I told my mom I didn't want any decorations knowing the theme would be St Pattys Day. Well she had already had bags of decorations ready to go knowing that I was gong to end up there and not on that plane. So she decorated and there was green everywhere. My fam called me or should I say DD'd me often, they had a great time. I wish I could of gone, but I was so sick I am glad I made the decision I did. So plans were in the works for something great for St Pattys Day 2008 but I ended up in "My Ireland" again. I am so glad this year to be out of the joint :) on my second favorite holiday! 

Here is some of the group that went in 2007. This pic was in their hotel lobby.

Here is me in "My Ireland" love my Shamrock glasses

This was Oscs first St Pattys Day. I use to buy him shirts for all the holidays he really hated it!

My Lil Irish boy
Everyone Loves an Irish girl!

HAPPY ST. PATTY'S DAY EVERYONE!!!!! 

Don't forget to wear your green! Xo 

No better feeling...

Than the wind on your face! 

Today reached 67 degrees out so last night I charged the Vespa after a long winters nap. It is supposed to be beautiful all week long! So I am excited to get in some good riding time. 

Just one of those days!

• Well, today didn't start out that great! I didn't sleep at all last night due to Snorer and Snorette. So Its official tonight they are in the guest bedroom. I don't know who is taking it harder me or them. After no sleep last night and saying shhhh every 20 minutes to get them to stop snoring I had to do something. I woke up at 6 am and finally moved their beds into the hall. Well one of the beds hit a night light so the glass bulb exploded and so then I had to get the vacuum out and make sure I got all the glass up. I had to throw their blankets in the dryer to make sure there was no glass on them then I went back to bed for a bit.
  

• As I am typing this Osc just came in and sat down next to my bed and he is just staring up at me... We will see how long this lasts I will end up giving in and moving their beds back in here. I just know it.
  

• I made cupcakes On Sun They were mmmmm mmmmm good!!! I will have to do that more often! One cake box makes so many so I had to share. I delivered cupcakes to some friends and my fam all loved them too! Makena got two :)
  

• I am thinking of putting a painting on here to do a Blogging Auction... Kind of like a Silent Auction but not :) Let me know what you think.
  

• On Mon I got to hear my Cystas voice after almost a year! So cute too :)

• Osc is now asleep on my floor :( And snoring away.... Wish me luck on this one!

• 8 more days Shar!!! The BIG 3 0 for you!!!!!

• Congrats Nat on your lil baby boy and Congrats Canz on your lil baby girl I can't wait to see them both! 

Ok I think that is all for now~! I hope everyone has the best day EVER, tomorrow! Xo

My Answers

Q: Does it scare you to think that one day you might have to have a lung transplant? If so, what about it scares you the most? Does it help hearing other post-transplant CFers talk about transplant, or has it made your fears (if you have them) worse?

A: It doesn’t scare me to know that I will need a Tx one day! I will embrace that day when it comes.  Hearing post Tx stories only reassures me that this is something that I will want to do! All my Cystas have had amazing experiences. I can’t wait to run just because I can! J

Q: Can you tell us a little about your work with the Heroes of Hope Panel? How did you get involved with that?

 A: The Heroes of Hope program is sponsored by Genentech, Inc., to recognize and salute unique individuals with cystic fibrosis who are stars in their own right for striving to live full and productive lives, and for being role models of hope to others, while continuing to manage their healthcare needs.  Click here to see our latest Hero of Hope Lauren Beyenhof. She is also on my blog roll, you can read her blog here. I was so excited to be given the chance to record her podcast. You can listen to it on the Heroes of Hope Website.

 I sit on this panel with such an amazing group of individuals. I was given this opportunity by a really great friend. She left the CF clinic as a nurse practitioner to go work with Genentech over 1o years ago. She is truly amazing! I am so thankful to be a part of such a wonderful program.

 

Q: Going along with Christy's post, have you ever thought about being evaluated for transplant? Has this ever been discussed?

 A: I have never been evaluated for Tx. My docs have never even brought it up yet. I am sure I will know when the time is right. I am So thankful that I have been able to maintain me FEV1 and I hope that can continue for a long time. 

 

Q: What does it feel like to be the mommy of the two cutest pugs west of the Mississippi?

A: I love my lil babies they truly are my life!! They are my “kids” and they are the best medicine a girl could have. They constantly are making me laugh and their love for life and each new day is inspiring! Read this post about how a dog celebrates life.

 

Q: How do you stay so positive?

A: hmmmm Well I am so blessed with an amazing support system my family and friends are the best. I believe when you are faced with a challenge you have two choices.  You can either, rise-up and overcome your challenge, or you can do nothing and allow your challenge to conquer you. So I choose to stay positive and live each day to the fullest. I have a bracelet that I never take off with the quote engraved on a silver heart….“Nothing is worth more than this day” I promise I have my moments, just not ever body gets to see them. Feel privileged if you have seen me in a moment :)

Q: What, if anything, would you change (future or past) about your CF treatment, they way you, or doctors have treated your CF? How do you keep the motivation to do your treatments on a regular basis, without any lapse? Do you ever get frustrated and have days where you just say, "The heck with it...I need a break!"?

A: For the future I would like to see a cure in my lifetime. 

As far as the past I wouldn’t change anything. I never take a break it sounds nice but in all reality I know it needs to be done. Don’t get me wrong I wasn't always as compliant as I am now. I was a typical teenager, just ask my parents.  When I started taking action and doing my treatments my self and going to my doc apts myself they were trusting me with everything. I didn’t want to let them down but there was still moments then that I would do things a little half ass, and put things first like friends and work. I guess I would regret that but then again it is part of growing up. Now today I go above and beyond when it comes to my health. I try anything and everything. My thoughts are just add it to the list J

 

Q; Are you taking care of yourself and staying out of the hospital?

 A: ABSOLUTELY!!!! See above… Last week was my jointaversary I have been out of the joint now for a year!

Q: When are you coming to Boston to visit??? Love you cuz!!! Oh, and when are we going to Ireland?

 A: I hope to soon, I really would love to come to Boston while you are still living there. I think Ireland 2010 should be in order! If the economy is still shitty Maybe 2012.

 For St Patty’s 2007 I planned a HUGE trip to Ireland and it kept getting bigger and bigger with all my fam. Remember my last name was McNeill we are Irish so we thought the whole fam should get together and go there for St Pattys day. Well the weekend before we were to leave I got the flu it kicked my butt! I went to the doc as soon as Mon rolled around to get some ABX so I could make my trip. Well I felt horrible I don’t even know how I drove to the doc I was so weak and when I got there I had to lay down I couldn’t even keep my head up. I got the ABX and went back home to rest. I started getting nervous about the flight so I ordered O2 for the way there.  Well Wed morning I still didn’t feel any better so my fam was off for the airport and I was off to the jointL I was satting barely 90 on 6 liters of O2 I am glad I didn't go to the motherland being that sick. I went to Ireland in 2002 for St patty’s day and once when I was 12. I'll post more about that next week when we get closer to the  big day!

 

Q: Would you ever want to live in another state? Have u lived in UT your whole life?

 A: I would love to live in San Diego. I love it there and I really love being at sea level. When I went to Newport beach this summer on room air my o2 was 99% I rarely get that here with o2 on. I was born in NJ but moved to Utah with my Dad’s job when I was 9 months old. Traveling is key I think it keeps me sane. I don't think I could really every move unless we could pack up my family and friends too.

 

Q: I am a jean fanatic... always on the search for 'the best pair' that fit 'perfect'... What is your fav kind?

 A: I don’t really have a fav kind. I have a pair of Ernest Sewns that I love and you can tell because I am getting a huge hole on the back upper thigh. I also love my Rock n Republics. I was Savvy Manager at Nordstrom so I have lots of great pairs.

 

Q: Would u ever go back to school? If so, working towards what degree?

 A: I don’t think so. School isn’t for me, I have diagnosed my self with adult ADD J If anything I would maybe take some classes here and there. When I went to school my degree was in Art. Those were the only classes I liked. All the other classes you would think they were my art classes by looking at all my notebooks, they were covered with doodles.

 

Q: When did you start painting?

 A: I have painted for as long as I can remember, But started getting serious about Art in High school

 

Q: What are you non-health related goals for the future?

 A: I have a ton of goals and things I want to accomplish. I have a bucket list and I am slowly crossing things off. One day at a time I guess, and this year being that I will be the big 30 I hope to cross even more off that list. Problem is I keeping getting these big ideas, and the list keeps getting longer and longer. 

So Dumb It's Funny....

Kind of like the Unicorn, Christy show this one to Jason. I can't stop watching it. Woop woop!

So Fancy!!

Ok sorry I have been MIA but I have been busy being busy.... :)

Ok Utah is getting the most fanciest Nordstrom store ever!! It is beautiful! I went to the private party on Tues night to check it out and I felt like I was in Vegas Milan. It was BEAUTIFUL! I am going bright and early tomorrow when the doors open I can't wait. I have always wanted to open a new store it will be weird being on the customer side of things it was bitter sweet on Tues. However, I did get to partake in the food and beverages and working there that wasn't an option. 

The fancy party...

My SIL and I (LOVE HER) and in the background the fancy store...

My new fabulous purchase from the kids dept! Love glasses!!! I love them I wore them all day and it wasn't even sunny :) Not to mention they are a great prop for photobooth!!

Today I went to the cutest lil cupcake shop called Divas with my friend Amanda. Its crazy I went to CF camp with her and get this believe it or not she was mis diagnosed she ended up not having CF, but horrible asthma. They still let her continue to go to camp since she was so close to so many of us. We got reconnected a couple years ago and have kept trying to get together when she comes up to SLC she came to Taste last year but we have been trying to do coffee or lunch so today it finally worked out and I am so glad!

Here is a pic of us at camp... I am in all red and Amanda has the white sweater on with red pants. The other 2 girls Marie and Michelle fought their fight with CF and they both were given their wings... 

Question and Answer

As the official CCC (Christy's Copy Cat)  :) I thought I would try a Q&A. So go ahead and ask away. 

So just leave any questions you may have in the comment section or you can e mail them to me. 

I will post the answers in one week! 

A Bday fit for a Princess

Makena had quite the Bday! I love how she says she is 3, see pic below. She got everything a 3 year old could want and more. Princess everything even fancy pink sparkling shoes. 

I am 3

Happy Bday McNoodle

"Please don't bother me" nothing like some uninterrupted toons and fruit snacks on your big day

She's a Diva for sure!

"Excuse me"

I took this video after she put purell on her hands she loves the stuff! Every time I pull it out she begs me for some. I love that she loves it!