29 May 2007

Self-Portait Tuesday

So some of the blogs I read are now doing Self-Portrait Tuesdays. So in honor of that, and my first day in the hospital I am posting a self-portrait. Isn't it a startling resemblance. My arm band broke off as I was adjusting it, so I decided it was a good SPT. Then they brought me a new one.

Took me an hour to get a room. For me that is long, they usually have my room ready. I guess it was actually ready because I got my usual Penthouse suite here at the hospital. They always take good care of me. Even though I have the bar code on my wrist that they scan when they give me drugs and such, when I am in here I never feel like just another number. Coming for the last 12 years makes a difference. All the nurses and respiratory therapists that I have worked with for so long are now supervisors and such. So I get pretty much anything I want. And the new people learn from them and keep it going.
Day one is always the worst, waiting for a room, waiting for food, waiting to see the doctor (so that you can get medicine started), waiting for RT to come and get the treatments started. Oh and the most important, waiting to feel better. It is the day I call the "waiting day".
JG is trying to sleep peacefully in her fold out bed. But of course never gets much sleep here. Love her for staying with me though. It is nice to know she is here. I just wish she could get more sleep.
So the waiting day is over, except the feel better part. I brought my new Rebel XTi with me, so I will do some photos for the blog as I go along, hopefully something cool.

20 May 2007

The big 32...

So I wanted to do something for my birthday, originally it was going to be 32 items to tell whether or not you have CF. Ya know to match my birthday, but I thought and found a bunch more than 32. So here is the entire list.

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.

You are so skinny that your port sticks out like a bottlecap, and you are the proverbial 'test dummy' for all the new nurse 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 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!!!"

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 than 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 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 20 minutes that is uninterrupted.

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 a 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.

Secretly you want to tell the adults that they know nothing about 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...

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 (See above image.)

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!