A goal not written down is only a wish!

I don't normally make new years resolutions, but over the last 9 months I've made a lot of changes in my life & I'm determined to keep those up making 2012 the best year yet! I'll make a list of those things on here then through out the year update on here how I'm doing! Someone once said, "A goal not written down is only a wish." So this is me writing them down.

1. Continue reading the scriptures every day.
2. Finish the Book of Mormon again.
3. Continue going to church every week & all ward activities.
4. Get started in pulmonary rehab!
5. Do 3-4 treatments every day.
6. Get a 3.3 or higher next two semesters!
7. Go to the temple at least every other month.
8. Hit an FEV1 (lung function) of 52%
9. Make more friends in Las Vegas!
10. Continue praying morning & night.

I'm so excited about 2012 & am excited to see where life takes me! A new year, new start & a new motivated me.

Goodbye 2011, it's been a wild ride!

Well it's been one heck of a year. There's been a lot of change that was never part of my plan. heaven took some people from me, I'm best friends with someone I hated through high school & I'm now attending my rival college & actually enjoying it. Looking back now, I'd say I'm pretty content with the person 2011 has made me.

Lets take a quick look (at what I can actually remember) of 2011:

January: I started my 4th semester at University of Nevada!!

March: Admitted to the hospital on 24/7 oxygen & PFT's were lower then they'd ever been before. I turned 20 the day after being discharged. Had to withdraw from school. Made the decision to move back home so my Mom can help out with me being so sick.

April: Said goodbye to my best friends & our apartment, moved back in with my parents. Went to Arizona for my cousin Mitchell's farewell before he left on an LDS mission to Oklahoma! The start of a friendship with a fellow cyster who would later become one of my best friends!

May: Got myself going back to church. My Great Aunt Venna passed away. An apology to a girl I hated in high school lead to a beautiful friendship. It only took a couple week till we felt like we'd been friends forever.

July: We spent a week in Pocatello, Idaho with my Grandparents, Aunt spring & Uncle Shan! The final Harry Potter came out!! My cousins had beautiful baby twins, Emi & Eli. Uncle Kib moved into the apartment attached to the house. My best friend lost her baby girl.

August: My best friend from Reno came down to visit & while on campus looking for my classes we beat up the stupid mustache guy mascot at UNLV(Go WolfPack!) I started school up again at a new campus. On the first day I was lost in 114 degree weather for 20 mins looking for class.

September: Spent almost every weekend cheering my sister on while she cheered for her high school football team, yes we were cheering cheer leaders (:

October: My little sister turned 18!! Was finally approved for SSI.

November: My baby brother turned 16! Made it 2 months without IV's, which is the longest I'd gone all year! Grandpa came to visit. My aunt was diagnosed with mouth & throat cancer. We spent Thanksgiving in Arizona.

December: Our first Christmas w/out Grandma & Grandpa in Las Vegas. 3 months w/out IV's & had the highest PFT's in over a year. Got a 3.5 GPA & enjoyed every minute of my classes! Heaven got a new beautiful angel. Hannah, a fellow cyster & friend passed away at the young age of 20. CF can be really cruel some days. Baby Axtyn was born into our amazing family. Bought my first car a '99 Ford Escort named Kim Possible!


& I rang in the new year the only way I know how, with my cousins!! There is never a quiet moment when you're with our family. I wouldn't trade them for anything.



This was just a small list of this crazy wonderful year I've had. I hope 2012 is a little bit nicer to me, especially health wise. I'm so excited to see where life takes me. One thing I learned in 2011 is you have to just roll with the punches & make the best of every situation you're handed. I hope everyone out there takes what they learned in 2011 & makes this next year the best it can be! It's a fresh shiny new start!! Goodbye 2011 & hello 2012, it's nice to meet you.

'Tis the season... My favorite season!

I feel like November came & went awfully fast & before I knew it Christmas decorations were up and finals were over! I never really got the chance to sit down & think about how blessed I've been.

I'm so grateful to have the parents I have & for the family I was born into. I'd be lost without them. We spent Thanksgiving in Arizona this year & it was one of the best Thanksgiving's I've ever had. This was the first Christmas we had with my Grandparents in Idaho & not in vegas. It was so weird not having them around, but it made me realize how lucky I am to have such a large family & really made me appreciate those we still had in vegas. We've been very blessed that my Dad has been able to keep his job. I'm also so grateful for my health. Some of you might think I'm crazy for saying that, but there are others who are so much worse off them I am. I have a friend who just passed away from CF at the young age of 20 & a aunt diagnoised with mouth and throat cancer. Sure I have CF, but it could be so much worse. I've made it almost 3 months without IV's & I'm so excited about that! I'm so grateful for my doctors & CF team. They put so much time & effort into my health. I have a wonderful life & honestly I wouldn't trade it for anything.

Some Arizona Thanksgiving Fun:

Claire enjoying her Thanksgiving dinner!
Only at a Houston thanksgiving do we have wrestling mats
& wrestling matches between cousins. I love it!
Nap time & football after eating Thanksgiving dinner
Roasting mallo's with the cousins

Christmas with the Marlers:

Christmas Eve pajamas!
Christmas Eve we all "sleep" in the same room.
It's always alot of fun!
The best family out there!! We even got Grandma
on skype in the picture. We're missing about 20 ppl.
Little kids playing there white elephant game
Grace & her Daddy singing Christmas Carols while Uncle
Danny plays his guitar. (btw best tradition ever)
& we can't forget baby Axtyn who was
born just in time for Christmas!!

You know you have CF when...

On one of the CF facebook groups someone started a "fill in the blank" thread. I got a kick out of them & had to share some of the answers we came up with.

You know you have CF when....

You walk a block & look & sound like you ran a marathon.
your "over night bag" consists of a suitcase carrying all your machines.
You're on a first name basis with the pharmacy.
you sound like crap, feel like crap, but look amazing!
You tell your friends you have to go home to get a good beating.
Your dog licks you cause you're extra salty!
You can eat 4000 calories a day an not gain a single pound.
Your pharmacist knows who you are by your voice.
The receptionist at your doctors knows you by your voice.
Discussing your bowl movement & mucus color is a normal convo.
You can swallow 5 (or more) pills at once.
When at least once during a convo your voice gets crackly.
Your family & friends can find you in a store by your cough!
When your best friend has a bottle of enzymes in her purse.
When you trip on the IV pole in your room while getting ready.
You leave the drug store looking like you bought the whole store.
When your dog can find you in the house by your cough.
You can tell the nurse how to run the IV pole or PFT machine.
You can sleep through anything thanks to your oxygen & vest machine!

I hope you enjoyed these as much as I did! This is only a small portion of the list, but these were some of my favorites. Oh the life of a CFer. Feel free to add on to the list (:

The ups & the downs of the CF community!

It's been along time since I've blogged. Now that school is finally out I'll have some time to update this, but that will have to wait a little bit longer.

I wanted to talk about the wonderful CF community for a bit. I haven't been apart of this online community very long, but I can't imagine my life before them. It's this huge support group of people that deal with the same things you do. They are there to celebrate your highs & to lift you up through your lows. They give you advice & someone that totally gets what you're going through. Out of this HUGE online community there are a handful of people that I've become very close to. One of my best friends I've never met in person yet I feel like I've known her forever. Others I can truely say I love them & am so grateful for their friendship in my life. We don't always talk about stuff dealing with CF in fact alot of our conversations don't touch on CF at all, but it was the CF that brought us together to begin with. Many of these friends I won't ever have the privledge of meeting in person, but it still breaks my heart to see them struggle.

It's been a roller coaster of emotions these last couple months for those in the CF community. We celebrated many getting the gift of new sparkly clean lungs & the gift of finally, for the first time in their lives, know how it feels to truely breath. We've also suffered heart break as we had to say bye to too many of our beautiful CF warriors so close to Christmas. Just because you've never met in person doesn't make the loss of a life from someone you had grown close to, someone you celebrated life with & someone who was taken too young from the same thing you have, any less heart breaking. While heart break comes hand in hand when you get involved in the CF community, I wouldn't trade all the friendships, support & great memories I've made over the past couple years for the world.

One of those we lost this this past month was one of my first CF friends. Ms. Hannah Ruth. She was one of the most amazing people I have ever known. She was strong, positive, beautiful caring, determined and so many other things. Through her I have met so many others in our community that I don't know if I would of met other wise. Hannah made me feel good about myself & always pushed me to be better. The night she passed away it was a flood of emotion. I cried for the loss of an amazing friend, but I felt relief that she finally wasn't in anymore pain. I still get on facebook hoping to see a wall post or update from her... if only heaven had facebook. I will always look up to Hannah. I hope that in face of adversity I can be as strong as she was. I love you to the moon & back baby girl, we'll miss you.

During this holiday season I'm asking everyone to please count our blessings. Tell your family & friends you love them & how much they mean to you. Don't take a single breathe for granite. So many fight every day to breathe & far to many families have lost loved ones this holiday season. Remeber the reason for the season. It's not about the presents & the holiday parts, no matter how awesome they may be. It's a time for giving, a time for family & a time to remember Christ.

Our new plan... Things are looking up!

I haven't really talked much about my health since my last rant about my adult clinic doctor saying my 14% drop was my new baseline & wasn't going treat it. That was a little over a month ago and a LOT has happened since! So here is a little catching up.

My actual CF doctor put me a month of IV Merrem & decided to keep the Bactrum I was already on for another 3 weeks. In the first 10 days my lung function jumped up 12% to 45. I felt amazing! I talked about my concerns with the adult clinic doctor with him & it felt so great getting it all of my chest. He told me there isn't much he can do clinic wise. I have to see the adult doctor. She knows more when it comes to lady stuff & bone density or heart problems then he does & because here in vegas we aren't backed by the hospital we don't have the money or resources to have an actual adult CF team. He did say that if I leave clinic visits feeling something should of been done or not happy with what happened to call him right away. He told me that she is a good doctor & he has no idea why should wasn't going try anything, but we do have a close enough relationship that I can call him anytime. He told me that I know my body & my life is the most important thing. He works day and night to keep us healthy and if I ever have any concerns even with something he did to be straight forward with him. He is also the only on call doctor so if it's after hours or the weekend any message left at the office goes straight to his cell phone & he'll call me back. So even though I still have to see the doctor I don't like I know Dr. N has my back!!

About 2 weeks later we had a "family meeting" to discuss where I am in the disease and what we can do keep my numbers up and me off IV's for longer then 3 or 4 weeks. He doesn't feel like my baseline is in the low 30's because I can hit higher 40's after meds. We talked about how this up & down is common for my age and that I'm kind of paying the price of my rebellion of all medically thing from my teen years, but he's proud of all the hard work I've put in over the past few years. We decided to end tobi (yipppe! I've been on that for YEARS) and just do Cayston then try an inhaled Levaquin on the old 'Tobi months". It's more of an experiment, but both my Staph & Stenotrophomonas react to Levaquin very well so inhaling it every other month should help hopefully! We also decided to start pulmonary rehab. That was my idea, but as soon as I said it he was very excited. No only will it help work my body out & hopefully give me more energy, it will also help me strengthen my lungs without damaging any part of me. We are hoping that will help stabilize things a bit. I'm off IV's & besides random nagging pains in my lower lungs that I have my Mom do PT on every night, I'm feeling alright. A bit exhausted from school, but I can't wait for our new plan of action to get started!

I'm so grateful to have such a supportive doctor & a even more supportive family. My Mom is there for everything, & fights for me when I just can't do it anymore. Being back in school has been wonderful. I love learning. & to top it off I've seen two of my best friends in the last month! Both Rachel and Sherise came to vegas for a bit to visit. It was nice having friends to spend time with again even if it was only a couple days. Things are looking up & if I have anything to do about it they are gonna stay this way. I hope everyone is loving life & all it's many wonders out there. It's up to us if we are happy or sad & I am choosing to be happy. I've spent plenty of time feeling sorry for myself & being frustrated with life lately. With things looking up, I'm embracing the opportunity to really focus on my blessings & enjoy living. Life is so much better that way!

I love you to the moon & back Hannah.

One of my dearest friends & by far one the strongest girls I know Ms. Hannah Landess recently did an interview with Fox news in Dallas. It breaks my heart knowing how sick she is & how little the doctors can do to help her at this point of her CF, but she never gives up. This girls a fighter!! Her Dad is a fire fighter in Texas & they're having their annual "Climb For Life" where the firefighters and any other locals can come and walk or run the stares at the Bank of America sky scrapper to raise money for CF. It's gonna be a BIG event! I wish I could be there! I love you to the moon & back Hannah! I hope in the face of adversity I can be as strong as you are. I've always looked up to you. I'm hoping that not only will this video & interview raise awareness of CF but that everyone that watches this video will cherish their life a little bit more. Something as simple as breathing, can be an impossible task for another. Appreciate every moment you've been given. (Below the video is the link to the article)

Hometown Hero: Climb for Life: MyFoxDFW.com