Thursday, July 2, 2009

From Nicole aka Lane's "Surfer Girl"- You know you have CF if:

32 ways to know if you have CF (maybe more) You do a happy dance when you hack up a huge wad of mucus, show your dad and he gives you a congratulatory high five, show your grandma, and she gives you money! When anyone at school, or anywhere for that matter, says that spitting is gross, your family or friends hurt them... real bad. Your doctors are on speed dial, and email, and pager, and IM. You know more medical terms by the age of ten than most people know their whole lives. You have multiple scars from PICC lines, Port-a-caths, IV's and other 'experimentations' as the medical community calls them. And because of that, you spend more time shopping for a prom or wedding dress than the normal girl because you have to find one that covers all of your scars to your liking. You are so skinny that your port sticks out like a bottlecap, and you are the proverbial 'test dummy' for all the new nurses fresh out of college, "you don't mind do ya?" You can’t even take great pleasure from your second milkshake of the day (even though your friends are jealous) because you know it is laced with Scandishake. You have used your small size to hide in the coat closet so your RT can’t find you. You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your office, in your friend's house, their car—heck everywhere! You have your enzymes in at least 3 of the above locations with the anti-bacteria gel. You can smell cigarette smoke hundreds of feet away and go searching for the source so you can ask them to trade their hopefully still ok lungs for yours so they can kill themselves faster. You laugh at those who cry about a common cold or worse yet stay home because of it! Unless they are co-workers, then you love them for staying at home because of it. You randomly yell at people who are coughing "GO HOME!!!" And you aren’t impressed at all with the kid who gets the perfect attendance award because you know that means he came to school sick at least once. You have talked loudly in line at the grocery store about using your vibrator when you get home. You know what tobramyacin ototoxicity is and have the hearing aids to prove it. You are truly sad for those cute little lab mice who must suffer from experimentations so we can have medicines to help us live — for about 1 milli-second-- then you jump for joy because they came up with something to help you breathe! You can instruct the nurses how to work the IV machine at the hospital and sadly you can tell which ones you should instruct the minute they walk in the room. Some of the most memorable times with your friends/family is hanging out and wasting time at the hospital. You may have been the one to try to pass off Mountain Dew as your urine sample upon admission. You know the hospital menu forwards and backwards and can advise others on what to avoid. You laugh when someone asks how you “caught” your CF. 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 Wal-Mart has confidently told you that she just got over whatever you have and recommends Theraflu. You laugh and tell her you don't think so. Then, you buy the theraflu, because, heck you'll try anything. You can sleep through anything, especially beatings, in fact they make you sleepy. Some of your best naps come in the hospital during treatment time, since it is the only 60 minutes that is uninterrupted. You’ve learned how to navigate through health insurance red tape by the time you are old enough to dial the phone. You don’t even blush anymore when asked about your bowels. You are a multi-tasker by need. While doing you're vest you MUST eat breakfast, do your nebulizers, work (or homework), make-up, straighten your hair and have a conversation with your spouse (mother) about your most current ache in your chest all at once or it would never get done. You learn by the age of 6 that life is a gift and most people don't see it. You have used your vest multiple times as an entertainment device for the kids because a shaking vest is a fun 'toy' and a laughing tool for the adults when you try to talk to keep up with the conversation, even on the maximum setting. Many adults have commented to you that you are very wise for your age. You would be too if you had been through it. You really did have a midlife crisis at the age of 14... "Nobody, including myself, thought I would get this far, now what do I do?" You are an adult with CF if the last one has happened more than twice... After “rounds” are over, you feel like you’ve earned a white coat more than some of the residents. When you are talking about getting on the list, you aren’t referring to some elusive party. You’ve had new lungs on your Christmas list. Clubbing to you is not a place where you can go to hang out and meet people. You bought stock in Kleenex. You get mad when the needle on the scale goes down but your friend is ecstatic when hers does the same. You have passed gas and blamed the smell on the dog. If Albuterol and Xopenex were living things you would marry them because according to you they were sent from heaven to us CFers for a little help in the breathing department. You lost your savings on trying to market "I heart albuterol" t-shirts. You get truly pissed at people who don't put yes as organ donors on their driver's license, what the heck are you going to do with them when you're dead, huh?! You made peace with God at an early age. You feel as if there is ALWAYS someone worse off than you somewhere. Sadly most of the time it's true, and you usually know the person, intimately. You are constantly on the go, realizing that time stands still for no one!!! You are constantly on the go, because you have 1/2 the years to do all the same things. You grew up thinking that everyone in your class does machines, nebulizers, inhalers, sprays and pills for an hour or two each morning before they came to school and an hour or two after. You are more scared of losing your loved ones, family and friends then you are of dying yourself. Your second greatest fear is their loneliness when it comes, since you know it is inevitable. You truly feel that God gave you this for a reason and, dang it, you're going to make Him proud, or die trying, or both, probably both! You realize at an extremely young age that you can buy everything but time and as a CF'er that is the one thing you would love to have! (If you're afraid of commitment, marry a cfer)

4 comments:

  1. Hahaha, I love this!! I just had to tweet about it because it made me laugh.

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  3. This makes me laugh everytime I read it lol....

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  4. Very good post..and very true!

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