Saturday, February 28, 2009

Makena turns 3 today!

Happy Birthday my lil McNoodle! 

I hope you have the best day ever! I can't believe that you were born three years ago today. Time sure flies by, you are getting to be so big. I love to see how you have grown every time I see you. I love your cute lil Princess personality. I am glad to see you are learning from your Aunt Somer ;) You are going to be such an amazing B I G  sister. I can't wait for our spend the night! Love you McNoodle Happy Birthday! Xo Aunt Somer

Friday, February 27, 2009

Can't Stomach it

When I was 15 I had to gain some major weight my mom made a deal with me that if I gained 10 lbs by my next appt, she would let me get my belly button pierced. Well I can't even tell you how many cans of ensure I drank in that month. I upped my enzymes and took them with every can. I split them up and took some before, during and after each can. To this day I still have my belly button pierced. But that month ruined me for any type of meal replacement drinks on the market, they all make me gag a bit. 

I am so ruined that if a dessert tastes a bit like the choc, vanilla, or strawberry drinks I can't eat it. Just recently however I can get a USANA Nutrimeal down... I drank the chocolate, it is a powder and I only added water and it wasn't bad considering I don't like chocolate. It tasted like a Wendy's frosty. I can only imagine what it would taste like if I doctered it up a bit.

Thursday, February 26, 2009

"My CF About Me"

Ok so I have been loving reading these and getting to know so much more about my Cysters. So after much consideration I thought I would put together one myself. I didn't think it would be that long but it has turned out to be quite a novel.

~I was diagnosed with CF when I was 11 months old on a hunch. My mom read a newspaper article that said “kiss your baby disease” If your child tastes salty get them in for a sweat test to see if they have CF. So she licked my bro and I and I guess I tasted salty.  She called my pediatrician and told him she wanted me to come in for a sweat test. He assured her I didn’t have it, I was a very chunky baby and there is no CF in my family history. But she insisted and so he did it and called her the next day crying. The docs told my parents I wouldn’t live to be 10 and from that moment on my two fabulous parents chose to fight my disease and when I was old enough I joined the fight.  Look at those cheeks :)

~My parents started the CF Chapter here in SLC after my diagnosis and I was a poster child for many years and attended many functions in the community to help raise money for a Cure. You can read more of my story and see photos of these events at a web site that my bro put together for me.
 ~ I was first hospitalized when I was 7 and I didn’t start enzymes until then either. This is a pic of me in the joint for the first time

~ My lil bro was adopted. My parents always wanted 3 kids but they didn’t want to chance having another Cfer. The pic below is the day we got Shelby

~I went to CF camp when I was younger for only 2 or 3 years my mom didn’t think it was very sanitary (smart lady) However I met some amazing people and we have lasting friendships.
~After my first hospital stay I began to do Ivs at home once a year until I was 10 then I started going into the hospital for a yearly tune up. I would usually go in around Christmas break so I wouldn’t miss much of school since not everyone knew I had CF growing up. When I graduated high school I started to talk more openly about CF. When I was growing up I just didn’t want people being sympathetic and never wanted to be the “sick girl” To this day when someone gives me The head tilt, you know the one it is just a lil irritating. 
~I danced growing up and was in a performing company we traveled many places to perform including Japan. I did ballet, tap, jazz, hip hop, and modern. I stopped dancing with my dance company my senior year in high school so I could be a cheerleader.
~I went to private school all my life so when I went to college for my first year it was hard to be a # rather than Somer. The college was 2 hours away from my home. I moved back after the first year and continued my career at Nordstrom and worked my way to management. I managed Kids shoes, Jewelry and Savvy.
~ Went to Primary Childrens Hospital until I was 22 I was the oldest patient then I finally transitioned to the University of Utah the Adult CF Center.
~Every time I go into the joint My mom chooses a theme and gets decorations and my parents decorate my room for me. It’s a different theme every time. Unless I am in around a holiday it is decorated from floor to ceiling you can see some pics on my website. The two below were from last March. I took my tap shoes to the joint, they made pulmonary rehab more fun :)

~I had a hard time with piccs year after year and finally after forming blood clots in my arms and being on coumadin on 2 different occasions. I got my “Thipple” in 2005. Many of you may know that as a port but I call it my “Thipple” for third nipple. I SO wish I would of gotten it sooner but it seemed so permanent. I flush it once a month and don't mind it at all. When I first got it I was a lil self cautious about it. I have had many people say some interesting things about it. Once when I first got it I was in Vegas with some girlfriends and I wore a low shirt so it was clearly showing it was my first time with a thipplicious shirt on and my friends assured me you could hardly see it. So we went downstairs and I noticed we forgot the camera so I opted to go get it and I was in the elevator with 4 guys all of a sudden I hear a guy scream "OMG what the hell is that" I was mortified right when I was about to answer the doors opened to my floor so I replied back "thats what happens when you go to a third world country and get a boob job" and I kept walking I didn't even look back. I told my friends they were liars :)
~I went to a chiropractor in 2005 and they found a kidney stone the size of a large gumball by accident. I had to have surgery to remove some of it and break the rest up so I could pass it thru a stent I never felt a thing not even passing the rest of the stones.
~I stopped working at Nordstrom in Dec of 2005 after continuing to get really sick. I was admitted when my FEV1 hit 22.
~ I am very involved in the CF community and try to raise awareness whenever I can. I sit on the Heroes of Hope Panel a fabulous program by Genentech (makers of Pulmozyme) I sit on the board of directors with my local chapter and I send my paintings to different fundraisers around the US. I was in the TOBI calendar for 2008 and helped the Boomer Esiason Foundation out with a campaign with Jiffy Lube last year.
~When my bro got prego with Makena Tammy had to be tested to see if she was a carrier and she was not. However my bros blood test came back showing 2 negative genes (which would mean you have CF) So they actually wanted him to go up to Primarys and get another sweat test it came back negative so it turns out one of his negative genes is mutated so with that mutated gene it makes him only a only a carrier. So my doc thinks I may have 3 or more CF genes. Which is very rare! The pic below is Shane getting his sweat test a lil over 3 years ago

~ 2006 I was in the joint 5 times 2007 6 times and  2008 twice all for 2-3 weeks at a time. I am happy to report the last time I was admitted was March 3 2008 almost one year ago. I am not sure I remember the last time I was out for a whole year. In April 08 I started back up on USANA and also got on the aztreonam early access study.
~ The meds I am on are albuterol (3 times a day) ,pulmozyme (twice a day),Tobi, (every other month)Aztreonam (on my off tobi months), Pulmicor 1mg (In the am)advair (twice a day),pancrease MT 16 4-5 with meals 0-3 depending on the snack azythromiacin (daily) Nexium (in the am) AllegraD (in the am) Vitamin C 500mg (3 times a day) USANA(proflavonal 90, hepasil, coquene 30, Essentials) am and pm) nasalcort (twice a day) During flu and cold season I drink 1 to 2 emergen c’s a day I also drink apple cider vinegar and I have a nose and throat spray that I use pretty regularly they are made by Seagate and I get them at the health store. I drink wheat grass when I can and just try to have a healthy diet. The last oral glucose tolerence test after I drank that drink my blood sugars were in the 40s so they said I was hypoglycemic which I guess is borderline CFRD not sure that whole thing is confusing to me. My airway clearance consists of somergenics J a mix of auto genic and other breathing techniques and I use the pep mask 3 times a day I got it after last March and I love IT! I thought why would I use that it is so 10 years ago but I really love it!!! I wear o2 at night and when I work out. I work out on the treadmill and I walk my dogs when its nice. I just started the Tracy Anderson Method and I love it she is Madonnas trainer! Well I think that about wraps it up for my health regime.
I have the old vest but I rarely use it I prefer pounding which I only have done when I am in the joint...

My daily cocktail

~My Last BLOW (PFT) was on Mon My FEV1 was 34 and I am hoping that I will hit a 40 after the next time I receive IV antibiotics. I keep visualizing it.
 ~ I have been blogging for almost a year now I started at the end of March. I am so thankful I did, I have been reconnected with some fabulous friends and I have found some amazing Cysters. The bond I have with my Cysters I tell ya it is something I can’t quite describe! I have two brothers and I think I know now why I never had any sisters.
~If I could change one thing in my life.... I would opt to NOT change a single thing! I believe I was given this life because I am strong enough to live it! I am SO VERY blessed to have such an AMAZING support system my family and friends mean the world to me!!!!!!

So there you have it my CF About Me I am sure I have left some things out but this is what sticks out in my mind. CF is just ONE of the MANY things that makes me who I am and for that I am grateful!

Wednesday, February 25, 2009

3 More Months

UNTIL I AM 30!!!! 
Or 89 days either way you look at it, it will be here soon. 
I can't wait!!!

Tuesday, February 24, 2009

Get the popcorn ready...

Set your tivos.... Ricki Noel Lander will be making a guest appearance on Access Hollywood tomorrow night Feb 25th (thanks Christy) check your local listings for times... 

Here's a pic of Rick and I.... I think we were in 7th grade( She surprised me for my Bday with a photoshoot) its funny we still like to dress alike  :)

Monday, February 23, 2009

A quick update

Well I was visualizing a 40 I really thought maybe with all the working out I have been doing that maybe I could blow a 40. They weren't close :( My Fev1 was down a bit from when I was in the joint last March. So maybe a 40 will be more realistic after I have had iv abx whenever that may be. So for now No joint for me :) so I am glad!!! My doc told me to just keep doing what I was doing and to start Tobi but to watch it since it makes me have some hemoptysis, just a lil streaking tho. 

I wanted them to do an x ray since I have been having some pain and have been pretty sore after the bleed. So I did get an xray and they couldn't pull up my last x rays to compare them to but I have some air bubbles on the right lower side but that might be old they didn't know so they just want to make sure it's not a pneumothorax. So I have to go back and get another x ray on Wed. So I figured I'll still take it easy until then just to be safe, since Im guessing a collapsed lung would really suck.  

I'm off to take a nap I didn't sleep at all last night thanks to snorer and snorett. I have renamed my dogs. :)
Happy Mon Everyone!

Sunday, February 22, 2009

11 years ago at The Oscars

Wow it's crazy to think that 11 years ago on March 23rd 1998 my Dad and I were walking down the red carpet....

I could of sworn I had pics in my scrapbook but I think I took them out to frame for my Dad for a present one year. I will have to snap a photo of it next time I am over at his house. You can still get an idea of what we looked like walking down the fancy red carpet with the photos I posted. I remember it like it was yesterday, we were running late due to the horrible traffic and our limo was probably #29 in the line 0f 100 and something waiting to pull up to the red carpet. We finally arrived and out we went, as soon as we stepped out of the limo flashes were going off and all the paparazzi were taking our pics. About a minute and 47 flashes later they realized we weren't famous. So in we shuffled as many stars were giving their red carpet interviews. It was so crazy to see everyone in real life. I was in awe, and was taking it all in moment by moment. Here are some pics from my BIG night....

the first page of the program
Our tickets
All the presenters from that night (Notice 5th down on the right hand side, we sat right above her. I am telling you I have had some close encounters with Madge but still have yet to meet her. One day...)
The Winner is..... The Titanic
This was the dress I wore it was floor length, complete with a scarf and gloves of course :)... (like I said I will have to get the good pics from my dad)
This is the tux my dad wore(this pic was from another function but you get the idea)

Friday, February 20, 2009

The Sun is Shining...

It's another beautiful day out! I woke up this morning feeling great! Don't ever under estimate the power of prayer... Thank you guys for all your thoughts and prayers keep them coming for Mon. I really think the blood was from me thinking I was Tracy Anderson :) I guess I just needed a lil reality check to assure my self that I am NO Tracy Anderson!! I am still going to take it easy this weekend tho no treadmill til after the BLOW.

It is so nice out I am going to take the babies for a walk and sit outside at the bucks with a nice cup of coffee and a cupcake of course :) The particulant matter is at 19, so hopefully since its suppose to be nice out all weekend the air will cooperate. 

Cara its crazy how in tune we are... Its our cysterhood working at it's finest I find the same thing with most my cysters. Sare I didn't have to stop any meds or airway clearance as per the team. However being the PP/Dr Love that I am :) I did stop my pulmicort and advair. But I started them back up this morning and knock on wood.... I am good to go!

Have a fabulous weekend everyone!!!

Thursday, February 19, 2009

They always make it better...

Remember when you were little and you would fall down and you would get an ouchy? Well the only thing besides someone kissing it better that seemed to help was a bandaid. Even if you couldn't see your new hurt a bandaid always helped. Well I need to invent a tube top/tank top band aid...
Warning CF talk below could be TMI
Yesterday I was on a roll on the treadmill when all of a sudden I felt I needed to clear my airways a bit. I tried coughing and didn't get anything up but cleared what ever was in the way it sure didn't feel normal tho. So I continued my workout and then came up stairs and coughed and this time I went to grab a kleenex and yep just what you don't want to see blood. CRAP!! I started to taste that gross metal taste with each cough. So I continued to cough up until it was just streaks in the mucus. It was never straight blood so if there is a good sign when you have hemoptysis that is it. So I went back downstairs turned my O2 back on and laid down, called my CF team and left a message. 

About 30 min later it was just lil dots and streaks of blood. So I figured I maybe over did the work out. When my nurse called back she thought that I could of over done it and popped a blood vessel . Coughing up blood is also a sign of infection, so I am hoping that isn't what is brewing down there. I already had a clinic appt on Mon and since it was getting better she was fine with me just coming in then unless it gets worse. So I am just taking it easy instead of doing the treadmill today it was really nice out so I took the babies for a walk. Now I am just lounging around. My lungs are a lil sore and that is why I need to invent a tank top bandaid. If I could just put a bandaid on these lungs I know they would feel better.

Please pray that there is no infection brewing and that on Mon I blow good numbers.

Tuesday, February 17, 2009

Out of My Realm

So a year after my friend requested me to paint a painting for her I finally did! Her Bday is on LOVE day, so I thought it would make the perfect Bday gift. There was a human involved and I am not that great at the human body especially the hands and face. So here is the painting that she wanted.... 
One of the tribal tattoos is even a L2B sign (love to breathe) 

Saturday, February 14, 2009

♥Happy LOVE Day♥

Happy LOVE Day! We hope your day is filled with lots of LOVES and HUGS! 
Somer,Oscar & Lilly Love

Friday, February 13, 2009


In Christmas 07 my Mom gave me a gift certificate to get my helmet or my vespa custom painted. I wasn't sure which one I wanted to paint and I was having a hard time deciding on what to even put on it. So after much consideration it finally hit me a year later. So I took it down in Jan and I just got it back I can't wait to go riding. I think I have a lil bit of spring fever. 

So here it is we kept it the same color and painted LiveBreathe on it. She also added sparkles which doubles as a safety precaution they reflect the sun light and make me that much easier to see.

Thursday, February 12, 2009


As a show of solidarity in the fight to find a cure for Cystic Fibrosis, everyone who has a "Love to Breathe" necklace wear it on Feb 14th LOVE day! The positive vibes coming off so many incredible individuals on such a special day will certainly make a difference! Happy LOVE day! Xo

Wednesday, February 11, 2009


The best package just arrived on my door step!! YUMMM 4 Black & White cookies from the BIG APPLE!!! I already had one for breakfast! I am not a big fan of cookies of course I like the occasional Girl Scout cookie and a sugar cookie loaded with frosting. But my #1 is the Black and White cookie, if you are ever in the Big apple I suggest you try them they are everywhere and even the Bucks(starbucks) has them sometimes. You can only get them in NY so make sure you put it on your list to do when you visit there. It's more like a piece of cake then a cookie hmmm maybe more like a cupcake ;) One side Vanilla the other Chocolate! What a tasty treat!

Tuesday, February 10, 2009

William P Young author of THE SHACK

Click on the link above to see the interview with the author of The Shack, William P Young. He was on Good Morning America this morning Feb 10th.

4 days til LOVE day!

YAY! Can't wait til Sat!! I am sure you all know by now I am obsessed with hearts! I LOVE day!!! There are many reasons why I love the  this is the time of the year that I find lots of decorations for my house that end up staying out year round. Because let's be honest you can never have enough ♥'s in your house. So the count down begins....

Sunday, February 8, 2009

The Shack

I just finished The Shack.... Has anyone else read this book? I would love to know what you thought....

I loved it and I would definitely recommend it. It is a book that keeps you thinking long after you are through, it could possibly even change they way you think about life. Read it! 

Thursday, February 5, 2009

It's A Boy!

Today we found out that baby McNeill is a BOY!!!!

Makena wanted a sister but I assured her that she indeed wanted to be the only girl. Trust me I wanted a sister growing up but I am so happy I didn't have one! The whole family gathered around and I am very proud to say I was the first to spot the package! We are so excited!!
Congratulations Bro and Tam! I can't wait to see my lil buddy! Xo

Makena and I
Makena and her daddy(his lil princess)
Tam and My lil Nephew!
My Lil Nephew
"The Money Shot" It's definitely a boy!