I'm Famous!

Today, an article was posted in the Lake Forester about me, CF and transplant!

Read article here.

XO

You know you have CF when…

This was recently posted on CysticLife, a forum I follow for Cystic Fibrosis.  It struck me funny and wanted to share.  I did remove some that didn’t apply to me and tweaked a few to apply more so to me.

*You do a happy dance when you hack up a huge wad of mucus, show your hubby, and he gives you a congratulatory high five.
*You know more medical terms by the age of ten than most people know their whole lives.
*You have your pharmacist, family doctor, CF doctor, transplant doctor, endocrinologist, ENT that you always use, home supply company and your medical insurance company as numbers 1-10 on your cell phone's speed dial.
*You have multiple scars from PICC lines, IVs and other 'experimentations' as the doctors like to call them.
*You are so used to getting your blood drawn that you are the proverbial 'test dummy' for all the new nurses fresh out of college - you don't mind, do ya?
*You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your friend's dorm, in their car - hell everywhere!
*You can instruct the nurses how to work the IV machine at the hospital.
*You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF.
*You make people wince on a daily basis because of the sound of your cough.
*The checkout lady at Target has confidently told you that she just got over whatever I have and Theraflu worked for her, which you calmly say, 'I will be sure to try that.'
*You can sleep through anything - you perfected the skill by being shaken by your Vest all of these years.
*You are a multi-tasker by need. While you're doing your Vest you MUST: eat breakfast, do your nebulizers, work, play with the dogs and have a conversation with your hubby about the days plans all at once or it would never get done.
*You learn by the age of 15 that life is a gift and most people don't see it's pretty paper.
*You have used your Vest multiple times as a torment device for your dog by blowing air at him and watching him try to catch it in his mouth, entertainment device for kids because a shaking vest is a fun 'toy' and a laughing tool for adults when you try to talk to keep up with the conversation, even on the maximum setting. (SO TRUE)
*Many adults have commented to you that you are very wise/mature for your age.
*You feel as if there is ALWAYS someone worse off than you somewhere.
*You are more scared of losing your loved ones, family and friends than you are of dying yourself.
*When dogs and babies lick your ever-so salty skin.
*After working out, or just being in the heat, you have a visible film of salt covering your entire body.
*You look at food labels and say things like, "Sweet! 600 calories per serving!"
*You are so tired of people saying "have another smoke!" after you finish a coughing fit, and you wonder if they are worth the real explanation.
*You have an extra dessert and everyone wonders where you put it, because it sure doesn't go to your hips!
*You make sure you don't go to the bathroom BEFORE you get weighed at clinic - every ounce counts!

Cystic Fibrosis….Part 1

I think of myself as a very well rounded person and I don’t believe I have one certain attribute, trait or aspect that defines ‘me’.  That is why it seemed wrong to make this blog about one topic.  It does seem fitting, however, to devote some of my writings and reflections to Cystic Fibrosis (CF).   It has really been prominent in my life over the past 2 years, where sometimes I feel like all I am is CF, more so than ever before.  Don’t worry!  I quickly reject those thoughts as I think of the many blessings that I have been granted in life,  strength God has given me, and the love and warmth in my heart that I can share with others.
So, CF. Where do I start?  I was lucky to have a childhood that was minimally impacted by the disease.  I had friends, went to sleepovers, played outside, was a good student, outgoing, opinionated, strong and spunky.  My Mom would perform manual chest PT, where I would lay in different positions as she used her hands to pound all over my back/chest for 30 minutes, twice a day, so I could spit out mucus.  I really don’t remember this much – although I am sure my Mom will tell you I probably fought her tooth and nail and hated doing treatments.  I do remember I would do the treatments in front of my friend Andrea, and she always wanted to help!  I think in 6th grade we purchased The Vest, which was a plastic strap on vest that would blow up with air and shake the mucus out.  I also did a few nebulizer aerosol treatments like albuterol and antibiotic medicine.
I was hospitalized a few times for lung infections before the age of 14, but I sort of remember them as fun experiences where I played with other children, painted pictures, played games and had really nice nurses.  I am sure at the time it was probably not all fun and games, but  it’s good that I don’t remember it being a bad experience. 
I had to take pills whenever I ate food to help digest the fat and absorb proteins/vitamins.  This was more of a nuance and became embarrassing when Mom would ask for cups of water at fast food drive-ins because “my Daughter has to take her piiiiiiilllllls”.  At that time, I was thinking, “seriously Mom, just pay 10 cents for the cup and stop sharing the fact that I have an illness”.  It also became annoying that I could not go outside/be in gym class on hot days for fear of heat stroke, as CF causes you to sweat incredible amounts of salt.  Don’t worry, Mom was on top of that too, making sure the school had plenty of Gatorade at the nurse’s station (embarrassing!).  Outside of these medical treatments, everything else was normal.
In high school, I had friends, played soccer one year, was in chorus, enrolled in honors classes, had my share of boyfriends, went to parties and dances, and was lucky to stay out of the hospital until sometime in college.  I think my experience was pretty mild for a kid with CF – I was so lucky and I count my blessing everyday for this.  A lot of children need to have feeding tubes, stomach/intestinal surgery, longer hospitalizations, they have antibiotic resistant bacteria in their lungs causing such damaging infection and some are not able to go outside and play.
So, that is a little history on the first part of my life.  My next posting I will talk a little bit more about life as an adult and how CF has had more of an impact on my life recently.  To learn more about Cystic Fibrosis, please see Cystic Fibrosis Information on the right side of page.  One day soon, I will do a summary explanation of the disease.
Neat website I came across that shows what the Vest therapy looks like: http://www.singingatthetopofmylungs.com/Home.html