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 www.lovetobreathe.com 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!

16 comments:

♥Lisa and The Pug Posse ♥ said...

First I want to give you a ((HUG))This was a deep personal post that you are proud to share with us.
I love how your parents surprise you with a theme each time you are in the Joint...that is fantastic! you are so Blessed to have such a wonderful family.
Whitney had her sweat test done when she was 15 Months old...passed the test but still could not find a diagnosis on why her air supply was shutting down..
after months of testing and biopsies she was diagnosed with
"IdioPathic Tracheal Stenosis LaryngoMalicia" with is a paralyisi of the maine valve in the main airway. so she too is on albutero and one called Pulmicort and sometimes her Nebulizer....
she used to have to go into the hospital every 3 months for surgery to cauterize the floppy valve and I wish I thought of a Theme for her room like your Parents do...
when she has to go back in I will have to remember to do this...
as for your daily cocktail...I love the pink Pills with the little sprinkles in them...so cute!

Ellie Grace and Bennett said...

Okay...you are quite possibly the most amazing person I have ever had the pleasure of "meeting." Your attitude is infectious...which makes it one of the greatest gifts you could give to the people you meet. Your dedication to and knowledge about CF have made a difference in my life (and I am sure I'm not the only one you've touched). Thanks for being such a great friend!

Frau said...

Somer that was a beautiful post, you are pretty amazing! Thanks for sharing.

Rachel said...

I've got a munchkin on my lap right now so I can't post as much as I want to but I can't leave without saying something.

Thank you so much for opening up so much. You have brought CF awareness to my family and I think that is so important.

I was wondering about LOVE, I figured it was your middle name- good to know. I would have kept it also!

Gotta run, kids want to see more pictures.

xoxo- Rach

Natalie said...

I love you Som, and think you are an amazing person and my best BR. Keep on fighting..you are inspiration to so many people. Love you! And let's plan our trip to LA soon!!!

Carrie said...

I love this post! It's been so neat reading about everyone's history. I love how your parents decorate your room when you are in the hopsital. I hope its a long long time (like maybe never) until Sawyer is in the hospital but I will have to remember that....I know that had to help and make you feel so special. You and all the other adult CF'ers are such an inspiration to us parents with still very young cf children. I have such hope for Sawyer's future.

Christy said...

What a beautiful story Somer!!! Thank you so, so much for sharing it and opening up. I feel I know you so much better now.
I'm praying for that 40 fev1. :) Love ya girl. What an amazing Cyster you are!!!

zenmasterlauren said...

what a wonderfully unique and special person you are!!!!! hugs to you-

Graciy said...

that was so sweet. you really do have a great family.

The Ross Retreat said...

Summer,
Wow you have such an awesome spirit about you. You are always so positive and upbeat.... It gives others a burning desire to keep hoping and dreaming of the best things in life. When life seems challenging and you think doom and gloom, its time to read Summers Blog. You are amazing girl....... very cheerful, fun, cheerful, and extremely motivational. It was so fun to ready your history, and get to know you and your family. You are very lucky to have such a great support system. I have not updated my blog in a very long time, and need to get on the ball. Take Care Lisa R

OceanDesert said...

Ommmmmmmm 40.....

Thanks for posting this, Ms. LOVE!! btw.. I am pretty sure I would marry someone just to have that fabulous last name!!! ;)

I don't know your parents.. but I think I love them... what incredibly wonderful and creative people... hmmm... just like you!

btw... I will show you my old cheerleading pics if you show me yours... ha!

Heidi said...

Awesome post Somer! You motivated me to do one too. I also totally got a kick out of the "thipple"...what a freakin' riot!

Aimee said...

Hmmm...I am thinking I might be the next one to share my story! =]

Thanks for sharing all that! I always remember seeing your picture at PCMC in the PFT lab and on a bulletin board in the hallway. We (my mom & I) always heard good things about your from the team!

It's too bad we didn't get to know eachother sooner but I am happy we can get to know one another now =]

You are an amazing person and I have always looked up to you! You as well as a few other CFers have made me want to get more involved with raising awareness for CF and to do anything and everything I can to help!

Love ya girly!

P.S. I know you can get to 40!!!

mistieleigh said...

Oh Som! I loved reading up on you. You are great and amazing and CF is just ONE of the amazing things about you. You really are such a great friend and good person. I still remember thinking how genuine and nice you were when i first met you at GS! I am just happy we were reunited again at USU and that we have continued to be friends! I love ya!

Leslie said...

It was great to read about your life... thanks for sharing! I love the spunk you have for life! Keep it up!

65 Roses for Marcia said...

Hi Somer Meghan Love.Thanks for your comment on my blog.It led me here.I see you are a pretty amazing person!Since I am pretty new at the CF thing,you might be a good one to go to if I have questions:)