Out with the OLD...

In with the NEW!!

Bring on 2010 I am SO ready!

I hope 2010 brings you all HEALTH, HAPPINESS and LOTS OF LOVE!!!

Xo

Somer

MERRY CHRISTMAS!! Xo

This was Oscar's first Christmas... He was not loving this outfit but oh he was so (is) SO CUTE!!

Merry Christmas!! I hope everyone has the best two days ever! Enjoy your family and friends and remember the reason for the season!

Xo

The World is My Oyster!!

Ok after 2 days of waiting patiently by my door UPS finally delivered it!

Isn't it SO cute!!! I finally got my EVER GO!! YAhoo it's a portable oxygen concentrator that is FAA approved so I can take it on the plane and have stress free traveling.... Also no more heavy tanks to deal with :) this lil guy is only 10lbs. I think he needs a name... any suggestions?

Thank you all who purchased your limited Love to Breathe necklace I hope you love it as much as I love mine and thank you Lissa for making it ALL possible and for all your Love!!! Xo

To see more of Lissa's necklaces click here

Everyone has a dream... What's your dream?

Let it Snow, Let it Snow, Let it Snow!!!

Today SLC hit 103! UGH... I am on house arrest you can literally see and taste the crap in our air! So I am praying the snow will come clean out the air! It's not suppose to snow til tomorrow. But just maybe we will get lucky!!

Today I am waiting for avery important package I am so excited i will update when I get it!

Yay Christmas comes early for me! :) It also came last night too, I was able to have dinner with My Cyster Sara and Mike and got to finally meet Bey! I had so much fun what a great evening! We finally got pics this time too, I will post those as soon as I upload them! :)

Air Quality Index Levels of Health Concern	Numerical Value	Meaning
Good	0 to 50	Air quality is considered satisfactory, and air pollution poses little or no risk
Moderate	51 to 100	Air quality is acceptable; however, for some pollutants there may be a moderate health concern for a very small number of people who are unusually sensitive to air pollution.
Unhealthy for Sensitive Groups	101 to 150	Members of sensitive groups may experience health effects. The general public is not likely to be affected.
Unhealthy	151 to 200	Everyone may begin to experience health effects; members of sensitive groups may experience more serious health effects.
Very Unhealthy	201 to 300	Health alert: everyone may experience more serious health effects
Hazardous	301 to 500	Health warnings of emergency conditions. The entire population is more likely to be affected.

4 shipping days left...

Wow I can't believe it's Fri... This week has flown by.

I had my 3 month follow up appt from the joint on Mon. I blew a 37 so one point less than when I was discharged. So not bad but as you all know not my on going five year goal now of 42. So I came home and started the "42 will come true" Challenge. So I jumped on the treadmill for 30 min and its been about 2 months since I have been on it well I think I over did it. I popped a blood vessel again. So I have been dealing with that nasty taste of metal and streaking this week. The twins have still been bleeding a lil so I got on a high dose of Vitamin K to try and stop it and today it finally did... (knock on wood) So I am taking it easy til Mon and then balls to the walls right Ronnie? ;)

On top of all that I live in Smog Lake City! Holy cow the air in Utah is horrendous gotta love that Valley living. It is so bad right now. I am currently on house arrest which makes Christmas errands impossible, oh well I only have a lil more to do. The twins are a lil sore from all this particulant matter floating around.

The babies also had a vet appt to get some spots looked at. Lilly had a mass cell tumor 2 years ago and had to have a chunk of her removed so I try to stay on top of that. Osc had a tumor removed and Lills had a biopsy done on one of her spots and they are both cancer free! YAY!!!

I am so excited I have some good news to announce next week so stay tuned. Christmas is coming early for me :)

I have had some fun Christmas parties this week and getting together with friends I haven't seen in a while. Last night all my college roommates got together for dinner. It was so fun Thanks Nat again for all your planning!

I hope you all are enjoying your family and friends because really that is what this season is all about!

Xo

Happy Holidays!

We Hope Your Holidays are the BEST Ever!!!

Xo

Somer Oscar and Lilly

Let's De Stress!

So every once in a while I get these random news letters their goal is to share knowledge for better health...

So the last one I got gave 6 Healthy tips how to have a Happier Holiday... I thought I would share.

1. Accept that you can only do so much... I could be better at this

They say setting your hopes to high can cause a let dow. So set realistic goals, keeping in mind that you can't do it ALL

2. Maintain Healthy Habits... I definitely do this

Too much food and drink, too lil sleep and lack of exercise can lead to holiday illness. I would definitely add washing hands is a MUST!!! Purell is your friend people!

3.Go with the flow... Ok I can do this

Holiday traditions change over time. While you may be let down if you can't do everything you used to do, find pleasure in making and sharing new customs

4.Make room for sadness... I may draw the line here "There's no crying in baseball"

The holidays are a time where you may reflect on losing a loved one or sad memories. It's ok to be sad but I think you should take this time to reflect on all the Happy memories and good times.

5. Stick to your Budget... I am trying

It's hard but you don't have to buy store bought gifts... You can make gifts from the heart they mean the most anyways.

6. Seek Help If you need it... I think we can all be better at this

If everyone pitches in when needed, it will help lessen stress.

I hope these help... Do you have any Holiday Tips? Feel free to share! Only 11 more shipping days! Deep breaths!!!! ;) Xo

Wow it's Dec..

I can't believe it is already Dec...

Am I the only one that is not prepared.... So much to do.

The Air here is crappy and seems like every where I go all I hear is coughing and sneezing. Avoiding sick people and staying healthy is hard work... I need to buy stock in Lysol, Purell, Salt (still gargling when I get home), and of course the Netti pot, Apple Cider Vinegar oh really the list is long!

I ordered some NAC yesterday it's a supplement that I take but I ordered it in a fizzy form. drop, drop, fizz, fizz!! I am excited to try it out I will keep you guys posted. NAC is also a mucolytic so the fizzy form should be awesome!

I hope everyone is enjoying the Holiday hustle and bustle and staying healthy!

Don't forget to wash those hands ;)

Happy Thanksgiving!!

I just wanted to wish you all a very Happy Thanksgiving! I have SO much to be thankful for... I am so lucky and truly blessed! I have a wonderful family, 2 amazing babies and fabulous friends! Life is GREAT!!! Enjoy your day! Xo

30 1/2

HAPPY HALF BIRTHDAY TO ME!!!!

Today I am 30 1/2 :)

Have a lil Faith

This dog was born on Christmas Eve in the year 2002. He was born with 2 legs - 
He of course could not walk when he was born. Even his mother did not want him. 


His first owner also did not think that he could survive and he was thinking of 'putting him to sleep'. 
But then, his present owner, Jude Stringfellow, met him and wanted to take care of him. 
She became determined to teach and train this little dog to walk by himself.. 
She named him 'Faith'.

In the beginning, she put Faith on a surfboard to let him feel the movement. 
Later she used peanut butter on a spoon as a lure and reward 
for him for standing up and jumping around. 
Even the other dog at home encouraged him to walk. 
Amazingly, only after 6 months, like a miracle, 
Faith learned to balance on his hind legs and to jump to move forward. 
After further training in the snow, he could now walk like a human being. 


Faith loves to walk around now. 
No matter where he goes, he attracts people to him. 
He is fast becoming famous on the international scene and 
has appeared on various newspapers and TV shows. 
There is now a book entitled 'With a Little Faith' being published about him. 
He was even considered to appear in one of Harry Potter movies. 


His present owner Jude Stringfellew has given up her teaching post and plans to take him around the world 
to preach that even without a perfect body, one can have a perfect soul'. 


In life there are always undesirable things, so in order to feel better 
you just need to look at life from another direction. 
I hope this message will bring fresh new ways of thinking to everyone 
and that everyone will appreciate and be thankful for each beautiful day. 
Faith is the continual demonstration of the strength and wonder of life. 

 
A small request: All you are asked to do is keep this story circulating.

Did you hear the news?

Click HERE to read and watch Oscar and Lilly in their TV debut.

This new drug is just one step closer to having CF stand for CURE FOUND!!!!

Who Loves to Breathe?

That's right... Custom Love to Breathe necklaces!!!

Click here to order your very own and read about our exciting new ideas!

I'm in todays paper

Drug could stop mucus production in cystic fibrosis sufferers

To read more about this article that is in the Salt Lake Tribune click HERE

The Wooden Bowl

I was sent this e mail and had to share it.... Have a great weekend everyone! Xo



A frail old man went to live with his son, daughter-in-law, and four-year-old grandson. 
The old man's hands trembled, his eyesight was blurred, and his step faltered 

The family ate together at the table. But the elderly grandfather's shaky hands and 
failing sight made eating difficult. Peas rolled off his spoon onto the floor. 
When he grasped the glass, milk spilled on the tablecloth. 



The son and daughter-in-law became irritated with the mess. 
'We must do something about father,' said the son he had enough of his spilled milk, noisy eating, and food on the floor.' 

So the husband and wife set a small table in the corner. 
There, Grandfather ate alone while the rest of the family enjoyed dinner. 
Since Grandfather had broken a dish or two, his food was served in a wooden bowl. 

When the family glanced in Grandfather's direction, sometimes he had a tear in his eye as he sat alone. 
Still, the only words the couple had for him were sharp admonitions when he dropped a fork or spilled food. 

The four-year-old watched it all in silence..

One evening before supper, the father noticed his son playing with wood scraps on the floor. 
He asked the child sweetly, 'What are you making?' Just as sweetly, the boy responded, 
'Oh, I am making a little bowl for you and Mama to eat your food in when I grow up. 
' The four-year-old smiled and went back to work. 

The words so struck the parents so that they were speechless. Then tears started to stream down their cheeks. Though no word was spoken, both knew what must be done. 

That evening the husband took Grandfather's hand and gently led him back to the family table. 
For the remainder of his days he ate every meal with the family. And for some reason, 
neither husband nor wife seemed to care any longer when a fork was dropped, milk spilled, or the tablecloth soiled. 



On a positive note, I've learned that, no matter what happens, how bad it seems today, life does go on, and it will be better tomorrow.



I've learned that you can tell a lot about a person by the way he/she handles four things: 
a rainy day, the elderly, lost luggage, and tangled Christmas tree lights.



I've learned that making a 'living' is not the same thing as making a 'life..' 



I've learned that life sometimes gives you a second chance.

I've learned that you shouldn't go through life with a catcher's mitt on both hands.You need to be able to throw something back sometimes.

I've learned that if you pursue happiness, it will elude you 
But, if you focus on your family, your friends, the needs of others, 
your work and doing the very best you can, happiness will find you 



I've learned that whenever I decide something with an open heart, I usually make the right decision. 



I've learned that even when I have pains, I don't have to be one.

I've learned that I still have a lot to learn

 angels have walked beside me all my life--and they still do.

It's never Tasted So Good!

WOW!!!!! Drum roll please..... The 11th annual Taste of Salt Lake was a success!!! Thank you so much for everyone's hard work it paid off! We raised around $288,000 gross! SO fabulous!

For those of you that couldn't make the great evening you can watch the Taste video HERE the video was very powerful. It will give you a lil glimpse into the CF life, and show you why we truly celebrate every breath!

at my house let the evening begin!

The Love to Breathe Award giving to the Medical Director of Primary Children's CF center

Dr Barbara Chatfield (I painted this plate )

In front of the fancy ice sculpture

De Masked

Ricki and I with are "No swine in '09" masks

Yes we are still smeyeling under them ;)

Paintball

Come and support CF at the 1^st Annual Charity Paintball Event on Nov 12^th from 7pm – 9:30pm in Midvale. The address is 7050 South 400 West. The cost is $20 per person. Should be lots of fun!!

The Amazing Will Harbison

Today has been a rough day this afternoon I learned about Lauren getting her wings yesterday, then tonight T called to tell me my super hero Will got his wings this evening.

My heart is heavy with sadness, Will endured more than anyone could ever imagine but he fought a good fight and never complained. So I titled this post the same as this post here. Harbison family you have my thoughts and prayers. I know Will is breathing Easy and looking down at us with 20/20 vision and a pepsi in hand! I love you Super Hero thanks for teaching us SO much, your courage was amazing!

You can read more on Will and follow his blog here. He had such a passion for so many things but I think his true passion was being an amazing Uncle to Kayli she has such a very special angel watching out for her now! He loved her so much and he lit up when he talked about her.

BREATHE EASY MY FRIEND!

I AM SO BLESSED TO HAVE KNOWN YOU! Xo

Breathe Easy Lauren!

Breathe Easy Lauren! I am so blessed to have known you! You were an inspiration and a true Hero to the CF community! My prayers are with Brad and both your families~! Xo

God saw that she was getting tired And a cure was not to be. So he put his arms around her And whispered, “Come with me”. With tear filled eyes we watched her suffer And fade away Although we loved her deeply We could not, make her stay. A golden heart stopped beating, Hard working hands put to rest. God broke our hearts to prove to us He only, takes the best.

Anonymous

Swine Line Round 2

Well round 2 went much better thanks to my Dad! My Dad got in line for me at 7:30 am I got there at 9:30 with Starbucks in hand for us both, it was 34 degrees and lil snow flurries... BURRR

They started giving the shot out at 10 and I FINALLY got mine at Noon. They line was over a mile long and so ridiculous!! This clinic however were only giving it out to high risk so that was good! Some people were wheeling and dealing let me tell ya. Ps people allergies does not make you high risk, get the flu mist!

Me In the swine line!

When we were getting close!

Happy Halloween to everyone! I am headed to the U game tonight. Go UTES!! Ill be sportin a mask there too! I still have to be careful for 14 days for the shot to be in full effect! But have some sense of relief.

Taste of Salt Lake is one week away... so crazy! I can't wait!

Eye Opener

"Sometimes we're so busy worrying about what will kill us, that we forget how to truly live"

I saw this on Face Book and had to re post it on my status and here. I needed to see this!! I have been a hermit lately due to the whole swine thing. No thanks to the media and the fact that it's everywhere! So I cut myself off from all forms of media. I still have not been able to get the vaccine. I am hoping that tomorrow I will be able to get it. Fingers crossed! So only positive healthy thoughts, washing my poor 90 year old hands, purelling like crazy, sporting masks in overly crowded areas and gargling with salt water, sinus rinses and lots of hot drinks and with all those precautions the swine can kiss my A** ;)

I have a lil sinus thing going on and am not liking it one bit how does a hermit get sinus troubles?? I started TOBi on Mon so maybe that brought it out who knows. I can guarantee you tho I am fighting it with full force it doesn't stand a chance! By the way I love gargling with hot apple cider vinegar. I swear it helps break stuff up in the sinuses maybe TMI but I got a couple petrified plugs out when I did this the other day :) Gotta love getting rid of plugs!

I have been painting a ton!! I have been branching out and experimenting a lil having a ton of fun with it. I'll post some of them on here. Today I'll leave you with...

JUST LET ME BREATHE

Seriously? Not quite ready

Today I woke up to a white blanket covering the ground... Ugh I am not ready for snow yet.

How sweet it is!

Below is an article that will only mean good news for the CF community if it gets passed on Dec 10th, everyone keep your fingers and toes crossed that day! I have been on Aztreonam now since about June of 08 and I ABSOLUTELY love it! It's nebulized 3x a day with the E flow and takes about 3 min. You do it on your off months from TOBI. I really feel like it's made a difference in my life and I can't wait for it to help the rest of you!

A Gilead Sciences Inc. investigational antibiotic for cystic fibrosis patients with deadly infections will be reviewed by an FDA panel Dec. 10.

The Foster City-based drug developer (NASDAQ: GILD) said that inhalable aztreonam lysine would be reviewed by the Food and Drug Administration’s Anti-Infective Drugs Advisory Committee. The drug is an antibiotic against the bacteria Pseudomonas aeruginosa, the single greatest cause of death for cystic fibrosis patients.

FDA reviewers in September 2008 recommended that the agency not approve the drug, saying that Gilead needed to do more clinical testing. Gilead last week said that a head-to-head study of the drug versus Novartis AG’s tobramycin inhalation solution, or TOBI, will be fully enrolled by the end of this year and data from the study will be available in mid-2010.

Inhalable aztreonam lysine has won conditional approval in Canada and, in September, Europe under the trade name Cayston. The product will be available in Germany and the United Kingdom in early 2010, Gilead has said.

Gilead also is seeking approval from drug regulators in Australia, Switzerland and Turkey.

The drug has "orphan" status in the United States and Europe, granted to products that treat disorders that affect less than 200,000 people. The designation gives the product seven years of market exclusivity and possible tax breaks while under development.

Ps this post marks # 300, crazy....

Voting Tiome!!

Voting just takes a second and if Emily wins $5,000 goes to the Cystic Fibrosis Foundation!

Click here to Vote for Emily Schaller to help win $5,000 for charity!

Take one look at this native Detroiter and it’s plain to see. Emily Schaller does not take guff. Equal parts spark and wit, Emily is claiming her victories against cystic fibrosis having launched Rock CF Foundation in summer of 2007. Today Emily’s battle against this deadly genetic disease is printed in magazines and posted on websites, her greatest victories being raising $150,000 for cystic fibrosis research and securing a sponsorship of $20,000 from New York-based Spin magazine for Rock CF Foundation’s annual benefit concert. She is a super teacher and a speaker. Emily teaches parents, patients and audiences in the CF world about the effects of cystic fibrosis and improvements being made to the treatments. She is a super athlete. Emily has ran over 300 miles and biked over 700 miles and ridden 282 miles from Detroit to Chicago to keep healthy and raise funds for Rock CF. She is a super musician. Schaller organizes and rocks out at her annual “Just Let Me Breathe” (JLMB) rock ‘n roll benefit concert. To date the JLMB concert series has raised over $60,000. It’s plain to see, Emily is positive in her crusade. “ I am inspired and motivated to keep plugging away because I know for a fact that the money we raise is indeed helping to improve the lives of cystic fibrosis patients.“

Emily's journey with CF started with her diagnosis at age 18 months when doctors told her parents their daughter may not live long enough to graduate from high school. Cystic fibrosis is a life-threatening disease that causes thick mucus to build up inside the body and block vital organs like the lungs and pancreas from functioning properly. Thanks to her lifetime of treatments Emily is now a healthy and happy 27-year-old. “The Cystic Fibrosis Foundation is the reason I am alive today. Their constant research efforts enable me to do the things I love to do.” Nationally recognized as an advocate, Emily and Rock CF supporters and volunteers across the globe share in her passions of public speaking, performing, the arts, running and biking to fulfill her mission to “ROCK CF.”

In January of 2007 Gennentech Heroes of Hope Program named Emily a Hero Of Hope and Novartis’ patient and family outreach website, CFVoice.com spotlights video clips and a featured video about Emily and how she is thriving with cystic fibrosis. These and many other Rock CF press clips are updated at HYPERLINK "http://www.rockcf.org" www.rockcf.org.

For Emily, exercising and a positive outlook along with following her extensive daily medical routine of breathing treatments, chest physical therapy and a laundry list of medications are the keys to controlling CF. Making the journey on her terms and not the disease’s is her way of staying in ahead of the game to keep strong, healthy and in charge.

As an athlete, maintaining physical status every pedal and step increases pulmonary function and she has proved this to be true. In June of 2008 Emily completed her first half marathon running 13.1 miles. With the help of her friend/former gym teacher, she finished in two hours and four minutes! Her goal for 2009 is to break two hours. She will also run her first full marathon in ‘09.

Emily's truest reward comes from speaking to groups of all ages and sizes all over the country about CF. “We need to tell more people about CF and its’ effects because it still is the #1 genetic killer of children and young adults. Also I love to share my story to others with CF and their families to maybe give them a little hope and inspiration.” Elementary through college students, medical students, corporations with five people up to a crowd of 4,000 medical professionals, Emily has spoken to just about every demographic there is.

Twice yearly Emily is admitted to the hospital for what she calls her “tune up.” During these hospitalizations IV antibiotics are given to treat lung infections and the bugs that may be active and awaiting an attack. As with most CF patients this is old hat and Emily represents her fight working, training and counseling while on IV’s. Clearly, there is little that can slow this hero behind Rock CF Foundation down and as long as Schaller can talk we will continue to hear Emily's roar of hope and awareness about cystic fibrosis.

Let’s ROCK CYSTIC FIBROSIS so hard that one day CF will stand for Cure Found ”
-Emily Schaller

Supported charity: Cystic Fibrosis Foundation

Spooning for a cause

Making an impact NOW

Saving money is easier said than done… I have so many things on my list that I need to save up for. The majority of my list has to do with my health and let me tell you it adds up. Who would think that being able to breathe would be considered a luxury. I am in the market for a portable oxygen concentrator. I have done a ton of research and the one I am looking at is the Evergo by Respironics. It's FAA approved and most airlines allow it on their flights. It has 4 batteries and each battery has about 8hrs of life. It weighs less than 10 lbs and would make traveling stress free, not to mention I wouldn’t have to deal with O2 tanks for the times that I use portable O2. Basically all this translates to a luxury item that insurance won’t cover. GRRRRR

Well I was telling my sweet talented friend Lissa about the Evergo one day when she had an idea. See last year she gave me a special Love to Breathe Necklace that was just for her and I, the only 2 of its kind. Well let me tell you how many people lost sleep over not being able to ever own that amazing pendant. After numerous requests for the necklace she asked me what I thought about adding it to the collection, well I was hesitant cause I loved the idea that it was a one of a kind or two of a kind actually. So we were brainstorming back and forth and came up with the idea to only make 65 of them for $65. Sixty Five Roses is what some children call Cystic Fibrosis since it is so hard to pronounce. Then she got this great idea that what if we started getting more personal with our donations we could make a bigger impact now for patients. She is determined to help me get my Ever Go. Then we got to thinking how great it would be to help others with medical equipment etc that cost an arm and a leg. So many great ideas kept coming to mind. My cute friend Suzie will need to get her beautiful daughter a vest soon, well we all know those are expensive. I swear if you squint hard enough when you look at your vest you can almost see a car, or a down payment for a house. So how exciting will it be to help people now and get them the things they need to breathe a lil easier. We have more ideas to make Love To Breathe necklaces more personalized I'll post more on that later.

So with all this said I want to show you the First Limited Edition Love to Breathe necklace… They are numbered on the back and when Emily Schaller went to visit Ellen Degeneres well she took her number 5/65.

Click here to go to Lissa's Etsy site

simple and smart ways

to avoid getting sick this cold and flu season.

My Dad sent me this e mail I thought it was interesting and had some good points...

1. Frequent hand-washing (well highlighted in all official communications).

2. "Hands-off-the-face" approach. Resist all temptations to touch any part of face

3. Gargle twice a day with warm salt water (use Listerine if you don't trust salt).
H1N1 takes 2-3 days after initial infection in the throat/nasal cavity to proliferate And show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don't underestimate this simple, inexpensive and Powerful preventative method.

4. Similar to 3 above, clean your nostrils at least once every day with warm salt Water. Not everybody may be good at Jala Neti or Sutra Neti (very good Yoga Asanas to clean nasal cavities), but blowing the nose hard once a day and Swabbing both nostrils with cotton buds dipped in warm salt water is very effective In bringing down viral population.

5. Boost your natural immunity with foods that are rich in Vitamin C. If you have
To supplement with Vitamin C tablets, make sure that it also has Zinc to boost Absorption.

6. Drink as much of warm liquids as you can. Drinking warm liquids has the same Effect as gargling, but in the reverse direction. They wash off proliferating viruses From the throat into the stomach where they cannot survive, proliferate or do any Harm.

"Best day of my Life"

When I heard those words from Em last night I had goose bumps!! I was so excited and nervous for her all day. She was at the Ellen taping yesterday, so make sure to watch Ellen today! Pay close attention when they dance their hearts out in the beginning. Read Ems own words here as she blogs about her best day EVER!

Em I am So proud of you and your incredible journey keep Rockin CF!

Ps Ellen is now the proud owner of a special edition Love to Breathe necklace.... More on that to come in a later post.. Thanks Em for taking that to her :)

Emily to Ellen SLC style

I had a great time with Em while she was in SLC!!! It was SO great to finally meet her and her Dad. It was freezing yesterday and still pretty chilly today so we didn't get much riding time. She had an awesome interview on one of the radio channels yesterday and she did GREAT! The sun was shining today so we busted out the vespas and did a lil ridin. My moms BF John brought his truck over so we could get some pics with that. We went over to my dads so she could get some pics with his animals, I'll save those for another post. She is on her way to Delta for the night then into Vegas for a couple of days. Then off to Ellen! Go Em Rock CF!!

Our CF gang sign

Posing with Blitz

The Tire shot

I'm not to sure why are helmets are still on I guess in case we fell off ;)

Me rockin my Live, Love, Breathe helmet

She's off to Delta!