May is Cystic Fibrosis Awareness Month and the things people don't tell you about CF is what this blog is going to be about. Please note everyone is different not all CFers feel this way or have the same issues!
1. Cystic Fibrosis causes horribly bad smelling farts. Some that will bring grown, harry, bikers to their knees and clear a room.
2. All day long we have thick mucus coming out of areas we never knew we had. Ears, eyes, lungs, nose, poop, and even naughty parts.
3. Sex is very difficult, time consuming, complicated, and sometimes you need to wear oxygen just to attempt it. Thankfully, once you find the one, they won't mind.
4. Walking for long distances is almost out of the question at times. Most of us, however, are too stubborn to admit it.
5. Talking about CF for the first time with someone new is nerve racking and most of the time we make it sound less like a horrible, body controling, death taking disease and make it sound like a sweet puppy nice and fluffy.
6. The words "poop" or "stools" are a normal conversation for us! No, it doesn't bother us when people say it and rarely do we laugh at that word.
7. Eating a lot of cheeseburgers, pizza, and fatty foods looks like a nice thing for healthy people. The reality is shoving so much food down our throats is horrible sometimes even nauseating.
8. EVERYONE looks at you like you're a horrible person when paying for things with an EBT card or an SSI debit card. Why? Because people are judgmental assholes who see a "healthy" person doing anything in life and have to look down upon what they do not know!
9. Sometimes we can't hold it in and leave greasy stinky poo marks on couches, in pants, and in cars. It is more embarrassing than anything but it is something that just happens and you bear to roll with it.
10. Growing up we get made fun of and called "anorexic" just because we are small and can't absorb anything.
11. We normally know every nurse by first and last name. Most are even friends with us on FB. We can also run most medical equipment, pronouce all medications, and talk a nursing student through their day.
12. Being that we produce so much sodium, showering after a hot long day is the worst. Water washing away the massive amount of salt off of our skin makes it feel/taste like we've been in an ocean for a month.
13. Getting enough sleep is very difficult resulting in canceled plans a lot more often than we wish. It is almost a party just to get ready to go somewhere. Then, once you get to where you are going, you are ready to leave and go to bed.
14. Multitasking should seriously have a gold medal as we can function 100% while doing nebulizer treatments. Text, chat, FB, twitter, meds, homeworks, and the neb at the same time. Yep, golden!
15. Most of us don't really see ourselves as "sick" so we do not act like it. We never want pity or sympathy for having CF, but normally never say when it bothers us.
I think that is plenty I am sure I could keep rambling on and on for hours, however, I think this is fine.
The ugly truth,
Sandi
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