Deck the Halls!

I can't believe it's Christmas Eve!!!!

Happy Holidays Everyone! We hope they are healthy and filled with lots of LOVE!! 

Xo 

Somer, Oscar & Lilly

A toast...

Last night I had my book club Christmas party, Ryan was in charge of giving a toast before we got started. He found a great toast that we all wanted emailed to us today.  Its such a great toast, I think we should all follow this for the holiday season and throughout 2011.

This Christmas, mend a quarrel. Seek out a forgotten friend. Dismiss suspicion and replace it with trust. Write a letter. Give a soft answer. Encourage youth. Manifest your loyalty in word and deed. Keep a promise. Forgo a grudge. Forgive an enemy. Apologize. Try to understand. Examine your demands on others. Think first of someone else. Be kind. Be gentle. Laugh a little more. Express your gratitude. Welcome a stranger. Gladden the heart of a child. Take pleasure in the beauty and wonder of the earth. Speak your love and then speak it again.

How great is that?!?! It pretty much sums up everything I truly believe. Please share with others.... Xo

On the Third day of Christmas!

So if you are a Cystic Life member then you have had the pleasure of reading the 12 days of Christmas posts that some CF warriors are posting. I was honored that Ronnie asked me to post. 

If you are not a member of Cystic Life... I am not sure what you are waiting for, DO IT!! 

My post was the 3rd day this is what I wrote...

 


Is it just me or are the years getting shorter and shorter? Or is it that they are just starting the Christmas cheer earlier and earlier? Don’t get me wrong I love the holidays as much as the next person. But what I can’t stop thinking about is that with the Holiday cheer comes the ever so dreaded flu and cold season.
 
I guess I should introduce myself for those of you that don’t know me. My name is Somer Love. I try to live each day to the fullest by keeping my hope high and dreams big!! I am a 31-year-old adult living with Cystic Fibrosis, and I am an active advocate in the CF community. I make it a priority to raise awareness and help educate everyone on CF. Being diagnosed at 11 months old I was unable to make my own decisions. However, I am fortunate enough to have fabulous parents who chose to help fight my disease. When I was old enough I adopted my parents philosophy and joined the fight. I have a blog and update it often. Come join my fight over at LovetoBreathe.com

 I am so thankful for the opportunity to be a part of this newsletter. I want to share with you some tips that I do daily to rid my body of any airborne ailment that may have found its way in despite my best efforts. I do these all daily and swear by them:


 1. Of course we all know the power of clean hands. Use soap and water when you can and when that isn’t available then a little hand sanitizer goes a long way. I have that stuff everywhere; coat pockets, handbags, car, every room in the house…. You get the picture.
 
 2. At the end of every day, I gargle with hot salt water, and I also do a sinus rinse. This prevents any bug from proliferating and settling in.

 3. Drinking hot liquids can also knock any germs loose and send them down into your stomach where they cannot survive.
 
4. Try not to touch your face. If you have an itch use the inside of your shirt or sweatshirt, that’s what I do.
  
 5. And last, but not least, some say dogs are a man’s best friend and trust me its true. I love my babies! However, during flu and cold season vitamins are also man’s best friends. You can get Vitamins through supplements or vitamin-rich foods, like fruit and veggies. So stock up and eat healthy.
 
 Wishing you all a HAPPY and VERY HEALTHY Holiday season!
 
 XO
Somer 

Out but not out and about

Well I got out last thurs from the joint, I knew it was coming... So I went in, and was on a new floor entirely this time. Since the last time I was in the hospital the hospital had moved the CF wing. So I wasn't sure what to expect. The first day I got there I was in a temporary room until a patient was discharged from the princess room ;) Well thats my kind of room... they must of heard about me ;)

So the theme this year was Thanksgiving/My 1/2 Bday, I was in there on Thanksgiving and this year my 1/2 bday happened to be on Thanksgiving. So we decorated accordingly which confused a lot of the staff. But I think I have convinced about 10 people to start celebrating their 1/2 birthdays. ;)

See Libby Lou on the chair she's my pillow pet that Canz and Mistie brought up to me... I brought her home and Lilly and her became fast BFFs, so much for Libby Lou being mine. Lilly carries her everywhere its so cute.

I had an AMAZING view, here are some pics of that. Look beyond the plantation blinds... it really was a nice room, marble sink, full fridge and freezer.

All of the staff was so wonderful and complied to all my crazy strict germ a phobe rules while I was in there. I did have some crazies in the room next door and even had a prisoner that was shackled to his bed. Yep, I was sleeping next to a inmate in there. He had 2 full time guards at one time and granted he was shackeled down, but it was a lil intense. Not very many people can say they spent the night a room away with from a prisoner.

Since I have been home I have been on house arrest. Our air has been the worst in the nation for the last 4 days. Its so thick you can taste it and you cant see very far in front of you. It was putting a damper on my view while I was in the joint.

Yep the above shows we are the worst in the nation with California in second place

The air was a lil better today so I got out for a couple of hours but came back home to my O2. Last night my resting heart rate was 140. So I am taking it easy so that my stint in the joint can last me a long time.

I hope you all are enjoying the holiday hustle and bustle, be safe!! Xo

WON BY ONE

Seriously! So happy the UTES pulled it out, it was close... too close actually. 17~16 What a lucky game! 

I am so HAPPY!!!
A perfect way to exit the Mountain West conference. 

Way to go UTES!

Happily Grateful!

Happy Thanksgiving Everyone!!! I hope your day is filled with lots of love, gratitude and laughter!

I am SO VERY thankful for so much life has to offer! My WONDERFUL parents who would do anything for me, My AMAZING family, My SWEET babies, My FABULOUS friends, All My CF warriors out there. I am one lucky girl to have so many blessings!!! Of course I am thankful for all of you too, thank you for still checking Love to Breathe, and following my blog. My heart is full!!!

I am also celebrating My 1/2 Birthday today... Yep I am 31 1/2 :) Just one of the blessings I am thankful for today and everyday! Thanksgiving/ 1/2 Bday... What a perfect day to celebrate both!

Xo

TOGETHER....

AS ONE, we can make a DIFFERENCE!

I'm a member, are you?!?!?

WWW.CYSTICLIFE.ORG Join NOW!!!!

Just like our theme for Taste of Salt Lake this weekend... "Alone we can do so little, Together we can do so much" ~Helen Keller

Its oVer

are 21 game winning streak... over! done!

The UTES Lost!!! It was so very sad and a lil embarrassing! 47-7 YIKES!!! TCU had a 24 game winning streak and the last time they had lost was to us so let's just say they wanted revenge, and they got it. :(

Saturday was a SAD day for Utah!

We play Notre Dame this Sat so here's hoping we can start a new streak over. Go UTES!!!

If I could turn back Tiome!

Ahhhhh how refreshing that 1 hour time change is!!!! I love to fall back not so much spring forward.

I love that extra hour of zzzzzzzzzzz's I feel so refreshed today and I even woke up early :)

What are you doing with your extra hour?

Im off to go make cinnamon buns!!! MMMMMMM

Happy Sunday!
Xo

Fa la la la la....

Um wasn't it just Halloween?!?! Everywhere I go I have been hearing Christmas music not sure if I am quite ready for that yet. However this did not stop me from belting out Hark the Herald Angels sing last night on my way home from craft night. One of the radio stations started their 100 hours of Christmas music. Crazy~ This year has flown right on by!
Here is a pic of the cute craft my GSB came up with everyone did theirs a lil different. It is my THANKFUL craft! I love it!

~I have been a Blogger slacker... Not only on my updates but following all of my friends I must of needed a lil break we are allowed those right?  But NO worries... I'M BACK!!!!

~Taste of Salt Lake is a week away how did this happen... Seriously sorry I keep freaking about how fast this year is gone by I just can't wrap my head around it.

~The end of October I was so excited to have the chance to go to Baltimore to the NACFC(North American Cystic Fibrosis Conference) What an AMAZING time I had with old friends and new friends. Here's a pic of Em and I color coordinated and ALL and no we didn't plan it we just are practically the same person at times it's coconuts!

~I am still kind of feeling like a joint stay is right around the corner I have been staying on top of things tho and checking in with my docs regularly. I blow again on Nov. 15th so I could possibly go in then which would put me in there over Thanksgiving/My 1/2 Bday. Yep Nov 25th happens to be both Thanksgiving and my 1/2 Bday.

~Makena has been sick lately so we have resorted to hanging out on the phone. The stuff that comes out of her mouth is SO entertaining. She likes me to help her spell words and names while we are on the phone so she can write them on her chalkboard so she was going thru the usual names. Our conversation went like this;
Makena: How do you spell Somer, Oscar Lilly, Papa Len, Papa Larry, Gramma Donnie, then she asks me how to spell Papa Rocky?!??!

Me:I spelt each one back... I thought  I would save you from that part of the convo! Then I said Papa Who?

Makena: Papa Rocky!

Me: Makena who is Papa Rocky?!

Makena: You know that song Papa papa Rocky!

Me: Oh you mean Paparazzi Ha Ha!!!!

See she's hilarious!!!

This is a pic of a treat she made me when we were playing the hot and cold game. this was my surprise. Banana cookies with nerds on top... again she cracks me up! Oh and she's into pretending she is a pug so the dog bone n the plate is a scooby snack for humans not dogs ;)

~Tomorrow the Utes are playing TCU. We are currently ranked #5 and TCU is #3 so its going to be a GREAT game! ESPN college game day is even here. It's our blackout game so I am off to go paint my nails black and pull out My black Utah hoodie. Its suppose to be 70 degrees tomorrow which is crazy considering it is Nov. But hey Ill take it so I prob will have to just bring my hoodie along. GO UTES!!!

~And of course I can't do a busy being busy post without posting a pic of the babies. These pics I took today of them soaking up the sun thru the windows.

~I hope you ALL have a great weekend! Xo

HappY HalloWeen!

PINK BUBBLEGUM STUCK UNDER A SHOE!!

Have a Happy Halloween Everyone and be safe! Xo

The ins and outs to eating healthy

Eating healthy can be a lot of work. I have been on a pretty healthy diet since May. 

I watched Food Inc. It was a very well done documentary and I am glad I am aware of what I am putting into my body.  I try to eat organic whenever I can. I drink almond milk, eat lots of yogurt, I'm loving the Chobani Greek yogurt its very high in protein (14 grams) and I love my cheeses. I try to eat a ton of fruits, veggies and grains. 

I try to stay away from high fructose corn syrup and processed foods.  Key word is try here it is very hard! 

Its not easy to eat healthy and it is not cheap. I ran across this article today that I found very interesting. 

I thought it had some good tips. So I wanted to share...

its beginning to look a lot like...

Flu & cold season...

As I am out and about Im starting to hear a lot of sneezing and coughing... Yikes! Flu and cold season is upon us :(

So I am getting ready...

Flu Shot... Check!

Purell bottles filled in every room, handbag and coat pockets and car.... Check!

My economy size bottles to keep me in stock... Ordered these from Costco.com

Vit C bottle... Check!

Back to daily sinus rinses and gargling with salt water... Check!

Washing hands every time I enter my home nad guests too!... Check!

All these tips kept me safe last year... So I am gonna stick to what I know works.

What are you doing to prepare for this flu and cold season? Stay healthy people and please if you are sick stay home! Don't be selfish!!! Thank you Trust me its very much appreciated!

A New York State of mind...

My friend Mike Norseth is joining Team Boomer for this years New York marathon... He is raising money for CF while training for the BIG day. 

Below are his thoughts...

Have you ever heard the phrase, "Don’t write a check you can’t (or don’t want to) cash?"  I think I did that when I got BOOMERANGED and agreed to participate in the NYC Marathon for TEAM BOOMER! 

Having talked a big game to Boomer Esiason about being willing to do whatever it takes to help him and the Boomer Esiason Foundation (BEF) in their fight to find a cure for CF, it’s now time to back it up.  (Note, backing him up on the football field was much easier; I only had to pass out water and slap teammate’s asses. I kind of miss that!) I am joining more than 100 other athletes who are running the marathon for Team Boomer, a BEF program that makes a difference very day in the life of people with CF.

To join Mike in his fight against CF and to read more on his goals and ideas click here

Reunited & it tastes so good!!

IT'S BACK!!!!!

I went to the store and couldn't believe my eyes... Synergy Kombucha is on shelves again!!! 

Just in time for flu and cold season!!!!

To learn more about Kombucha click here

Oct 1st... really?!

Pumpkins, Oktoberfest, leaves are changing, haunted houses, cooler temps, scarves, boots, fireplace,

 fall is in the air!!

Done & Done!! Love a finished project.

~I am the proud owner of world's largest chalkboard... I have been wanting to paint a wall in my basement for quite some time now. Well I finally finished it on Sun. It looks so great! You can tint the paint to be any color I used a slate grey. I love it! I can't wait for Makena to try it out. Needless to say my back and arms are still sore! dark colors are a pain to paint!

~Lilly got her stitches out on Mon. Yay!! She is stitch free!!

~I had clinic on Mon, Pfts were about the same. I feel I am on the fence of still feeling good and a possible 2 wk stint in the joint, so for now we are just staying on top of things. I feel fine just have lots of mucus TMI I know ;) Anyways I go back in 2 wks to blow again and see where I am at.

~The UTES are on FIRE!!! We had our homecoming game last Sat we won 56 to 3 WHAT??? Were we even playing another team ?!? ;)

~I am in charge of a roundtable for CF parents night next week and am still brainstorming some ideas. I want to make my roundtable interactive any ideas for me. I def want to do something where they can put their name in a drawing for one of my paintings. I figure the best beneficial thing would be for the parents just to ask me questions so I'll do that for sure but want to do something else too...

~Seriously?!?!? Its not even Oct yet and I am seeing Christmas decorations everywhere C'mon retail world stop rushing life! Enjoy the moment! GOODNESS!! I need to start thinking of good Halloween costumes I saw this it could be a possibility. Oscar could be the taco and Lills and I could be Hot sauce or something.... well it's not set in stone ;)

~But seeing this Christmas stuff gets me brainstorming Christmas cards... I am running out of pic ideas for me and the babies... any ideas for me on this one? 

Ok well thats a lil recap of what has been going on in  my world... Been crazy busy around here but Busy is good! Hope you all are enjoying Autumn! Xo

Awesome! This is HUGE

“Improving Access to Clinical Trials Act” Passes U.S. House, Heads to President for Signature

September 23, 2010
Today the U.S. House of Representatives passed the “Improving Access to Clinical Trials Act” (I-ACT), in a victory for the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations.

The bill, which passed the Senate Aug. 5, now goes to President Obama’s desk for his signature. He is expected to sign it.

This legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits. Passage of this legislation is particularly important for people with CF, a rare genetic disease.

A limited patient population makes it challenging to find enough people to participate in research studies evaluating the effectiveness of promising new drugs.

“Because of this groundbreaking legislation, people with CF and other rare diseases will no longer be forced to choose between critical health care coverage and participation in research that could lead to the development of a cure for our most serious illnesses,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.

To read more visit www.cff.org

Kate Sneddon

This month's Hero of Hope Living with CF, Kate Sneddon, 16, is an exceptional teen who is balanced, positive and compliant with all treatments that her chronic disease of cystic fibrosis demands. She was named a Hero of Hope, not only because of her dedication to her health, but also because of her academic, community service and athletic accomplishments. She is also an excellent student with an "A" average, a talented artist that has displayed artwork regionally, a dedicated volunteer for the Cystic Fibrosis Foundation and a hardworking athlete in several sports.

"I wouldn't call myself a super teen by any means, but I strive to do my best so that I can be proud of everything that I do," said Kate. "In a way, CF has given me perspective. I'm not glad that I have CF, but it's helped me to be glad for what I have versus wanting what I don't have."

Heroes of Hope™ Living with CF recognizes individuals with cystic fibrosis (CF) who live full and productive lives while managing their healthcare needs.  To date, Heroes of Hope has honored over 70 outstanding individuals with CF around the United States.  Heroes of Hope recipients inspire others through their outstanding accomplishments, dedication to health maintenance and contributions to their communities. To learn more about Kate, go here  www.HeroesofHope.com.

To nominate your hero click here

Restless!

Lills had her surgery on Mon.

She's recovering well, she came home a lil groggy and was only mad at me for about an hour this time. I had the mass sent to the pathologist, I will get the results next week to make sure they got all the cancer. This time her surgery was on her left side last time it was on the right, 3 years ago it was on her chest. She's a Rock*!

She is doing great and is ready to play. Just one more day of taking it easy tho just to be safe. Tomorrow we will play ball! She's been walking around with the ball in her mouth all day I know she can't wait.

I hope everyone is having a great week. I can't believe it's almost Oct. I smell fall! Xo

Bummed!

Well I guess it's true what they say... A mother ALWAYS knows!

Lills has another Mast cell tumor that needs to be removed on Mon. It's smaller than the last one and I caught it early which is good. Her doc thinks he can just remove it by doing a block and sedation, meaning she doesn't have to go all the way under. It makes me so sad and breaks my heart that she has to do it all over again so soon. I hope she won't be to mad at me on Mon.

This is her eating frosty paws ice cream.... She will be getting lots of treats next week.

a lil bit of everything

Ok fall is in the air... I can't believe summer is over :(

Some things that have been going on...

~ FOOTBALL season is upon us!!! :) Yahoo GO UTES AND CHARGERS!!! I went to the opening game for the UTES what a game we played PITT and they were ranked 15 and we were ranked 24 it was a close game. Actually it was a nail biter... ahhhhh! But we pulled it out. That's right the UTES won! Woop Woop

~OKTOBERFEST So much fun!! Went with my Fam and Rickis fam. Its up at snowbird which is about 7900-11000 ft high. The higher elevation is a lil tough on the twins for me so had to bust out EVY aka the EVERGO. He treated me well tho and kept me satting around 92 on 2 1/2 liters. I prob could of turned it up even more being that my heart rate hovered around 120 resting. I was a lil nervous being that it was my first public outing on o2 well minus the airports. Of course there were head tilts and people staring, but I just waved and smiled at them and said hi ;) It was a great time and I just love seeing Ricki and Somer part 2 aka Makena and Roise... they are so cute together.

~Everything princess!!!

~Started Aztreonam... I mean Cayston I think I will always call it Aztreonam. Feeling a lil slugish so hopefully this will whip those lil mucus monsters into shape, because I definitely GOT MUCUS! I think maybe there should be a CF calendar kind of like the old GOT MILK adds but instead GOT MUCUS... I think it will go over really well ;)

~The babies are good I take Lills back in this week to get another spot checked I am praying its nothing So please send her positive thoughts. I found it literally 10 min after getting her home from getting her stitches out from the last surgery. My heart just sank but I am so hoping its just a mole.

~I didn't win the surf contest with CFvoice.com but they asked if they could put my video on their website so I'll let ya know when they put that on there.

~I hope everyone is enjoying their Labor day weekend!! Xo

Take advantage of this GREAT new program

Genentech, the makers of Pulmozyme® (dornase alfa) Inhalation Solution, is committed to helping all patients access our medicines, regardless of their ability to pay. That is why we are introducing the Pulmozyme Access Solutions Co-Pay Card Program, designed to help pay for Pulmozyme monthly co-pay costs. Contact your healthcare provider, visitwww.PulmozymeCoPayCard.com, or call 1-877-PZ4URCF (1-877-794-8723) for more information and eligibility requirements. Also, for coverage and reimbursement support, patient assistance, and informational resources, visitwww.PulmozymeAccessSolutions.com.  For more information about Pulmozyme, visitwww.Pulmozyme.com, or see the Pulmozyme full prescribing information.  Sincerely, Genentech

Please see Important Safety Information below and accompanying Prescribing Information. Indication Daily administration of Pulmozyme along with standard therapies is indicated in the management of cystic fibrosis patients to improve lung function. In patients with a forced vital capacity (volume of air exhaled with maximum effort and speed) greater than or equal to 40% of predicted, daily administration of Pulmozyme has also been shown to reduce the risk of respiratory tract infections requiring the administration of injectable antibiotics. In our pivotal study, safety and efficacy of daily administration has not been studied in patients beyond 12 months. Important Safety Information Pulmozyme should not be used in patients who are allergic to any of its ingredients. Pulmozyme should be used in conjunction with standard therapies for CF. When starting Pulmozyme therapy, patients may experience change in or loss of voice, discomfort in the throat, chest pain, red watery eyes, rash, dizziness, fever, orrunny nose. These side effects are usually mild and short-lived. If you experience any of the above, please report them to your doctor immediately.  You are encouraged to report negative side effects of prescription drugs to the FDA. Visitwww.fda.gov/medwatch, or call 1-800-FDA-1088.

Handle with Care

Ok now that I finished The Hunger games Trilogy I am on to my next good read...

I am reading 

Jodi is an amazing author, this is not the first book I have read by her and definitely not the last. I also really loved My sister's keeper. She really makes each book and character come to life. She is relentless when it comes to researching every detail of her subject matter. She writes about many disabilities that are unknown and by doing this she raises awareness and is educating people through her work. Definitely changing lives and making a difference.

Handle with Care is no different I love Willow and love how she is seen as a child and not a disability. I think many of us can identify with that. I actually e mailed Jodi I would love to see her write a book about CF. She doesn't have plans to do so at this time, but she never says never :)

Have any of you read this book? What did you think? No spoilers tho I am not finished yet. 

slower than...

A

than

Ok you get the picture... I followed my dad 9 miles from my house... 

He was driving this

Yep I was in my car with my hazards as he drove in this golf cart that went no more than 20/25.

 I am sure it was pretty comical and quite the site to see. We didn't break any rules either technically this electric golf cart is street legal. It even has seat belts. 

You will be happy to know we made it safely to the location. 

What an adventure!!

1st day of preschool

Makena had her 1st day of preschool on Mon. She looked adorable her mom got her up early and curled her hair so cute! Im loving the tie look ;)

I went and picked her up after school and we celebrated by getting two items at the target dollar section which is fabulous lil section if I do say so myself. She picked some heart sun glasses, and some sparkly pencils.

Then we ran some errands and played with the pugs for a bit. Of course no day is complete without a photo shoot with new heart glasses...

PEACE & LOVE

Love glasses

MOCKINGJAY

Its Finally here!!!!

In stores today I can't wait to get my hands on it! this is the third and finally book of the Hunger Games series. If you haven't started them yet I definitely recommend these books!! They are a easy read and SO entertaining!!!

watch out world... a new STAR!

McNoodle cracks me up! I love our daily phone chats... longest one so far 40 min.

Here our some Makenisms that I just think are adorable,

While playing vet she was the vet and I was the customer and she takes a look at our x ray machine and says "just as I expected..."
When she takes the stuffed animals temperatures she always says "O my gosh it' 18 50 hundred" that is a bad temp for sure ;)

If you ask her a question and she doesn't know she says, "I do NOT (as her eyes get real big) Know" or if you ask her if she wants to do something she says "sure" instead of yes... too funny

When she calls me since Lills' surgery she always asks "is Lilly doing better?" then she says whatcha ya doin? She calls voice mails e mails and when she leaves me messages she says Why are you not answering maybe your eating breakfast or doing chores. We always finish our convo with the I love you the most NO I love you the most game! I just love her....

She loves playing princesses, vet, and can't get enough of her fav cousins Oscar and Lilly and is hoping that one she turns 5 she can be the proud owner of a pug! I am not sure her parents are to keen on the idea.

And her new favorite song is California girls by Katy Perry.
Good thing she doesn't know all the words ;)

Hang 10

So this is my entry for the awesome Surf contest CF voice is doing...

Wish me luck!

Cf Voice Surf contest

Are you 18 or older and LOVE San Diego and have CF???? I jumped on this right away... San Diego is like my heaven on earth although I had to think outside the box and put my video skills to use ;)

Well Click here and see how you can win a trip to learn how to surf and Hang 10!

GOOD LUCK!!!

Fun in the sun

I had so much fun with my fam yesterday! We went to a BBQ at a local park and then they went swimming. Well I don't do public pools thanks to the germ a phobe in me so I had no intentions of even going to the pool at all. Then my Mom and John and I decided to go watch a bit while Makena my Dad and Shane and Tam swam.

Well I was dressed in a sun dress only. Who knew there would be a water slide at this pool. I couldn't resist tied my dress into what resembled a old fashioned swim suit, and the rest is history! I haven't been in a public pool for years... so much fun!!!

Sun Dress the new Swim suit line!

Really going Fast!

We are up SO high!

McNoodle and I