Yeah, I’m that one “sick kid”, the one who clears her throat before almost every spoken sentence, the one who coughs so much it rattles ears.
You may wonder, why am I smiling in a picture when i’m describing my disease in this post? Well, because Cystic Fibrosis has equipped me to have a faith stronger than any other, bravery, strength, courage and hopefulness. CF is a blessing and a curse all in one.
My disease is symbolized by pretty red roses, and purple ribbons.
But Cystic Fibrosis is not pretty at all. So many people are unaware of this disease.
Cystic Fibrosis (CF for short) is a lung disease that affects the lungs, pancreas, liver, GI tract, kidneys, and reproductive organs. The life expectancy is 47 but I am determined to beat that!
I do breathing treatments everyday. I do my physical therapy machines. I cough and cough until I find myself throwing up from coughing so much. In CF lungs, mucus is extremely thick. Once I spit mucus into the sink, and it got stuck in the sink, the water on full blast didn’t move it one bit. That’s how it is in our lungs.
I get powerful IV antibiotics with unpleasant side effects. The antibiotics make me really sick before better. I get brain fog horribly and usually have trouble forming sentences and I forget a lot of things because the days are a blur. Pumped full of chemicals, sometimes the infections keep coming back. I would have such a demanding schedule it felt like someone just kept taking and taking and taking from me. 3 times a day with a pole and a mini pump. Managing full time IV treatment is more than exhausting, it’s a full time job with no pay. It’s also so very unpredictable.
Another thing that is unpredictable are hospital stays. One day I could be living my life and the next day the doctor calls and says I need to be admitted for 2-3 weeks for hospital administered IV care. Some drugs cannot be done at home. Some are too powerful, and need monitoring. A hospital is desolate and boring, being in a room for almost 3 weeks is never ideal. I’ve watched code blues on young children who have had quite the fight. It’s depressing in there, I try to avoid it at all costs. Not just that, you don’t get sleep in the hospital! They are in your room constantly bugging you. Vitals every 4 hours? Meds every 6? Yeah, sleep isn’t a thing.
My body is always fighting CF. I sometimes imagine what CF would be like if it was a person. It would be a relentless, confusing, and overpowering person.
CF can be really awkward, too. Only a handful of people besides my family really get to experience the CF life.
I’ll just say it. CF has me in the bathroom all the time with explosive diarrhea because sometimes my enzymes fail to do the job. Yep, we need enzymes to digest any fat or calories anytime we eat.
CF gives me a lot of snot. In my nose and in my lungs mostly. Sometimes I cough and ton of mucus comes up, and sometimes it’s brittle and dry feeling.
Sometimes I even cough up blood. I’ll never forget the first time I coughed up blood, at my best friends house. It made everyone- including myself, lost for words. It’s frightening to watch someone cough up a lot of straight blood.
CF has made me have to buy different sizes of clothes all the time. Sometimes I’ll need to buy bigger jeans, because for the past month, my GI tract has forgotten how to work. And then, I’ll have to get my “sick jeans” for when I lose weight from the malabsorption and the belt just isn’t cutting it.
CF gives me constipation, sometimes I can’t go for days. It makes me lose my appetite along with it.
Sometimes, I am constipated WITH explosive diarrhea…Yeah, that’s about as unpleasant as it sounds.
I am poked and prodded around by doctors, even been a medical mystery many times in my life.
Without all of this, though, I wouldn’t be who I am. I’d probably weigh more, exercise more, be a little taller. I’d probably take more things for granted, things like a shower, or a meal. I’d probably be less down to earth and less understanding of deep things.
Having CF has made me extremely mature at a young age. I realized I was pretty different from everyone else when I was around 6 or 7. I just enjoyed being different and I went around telling everyone I had special lungs.
So as I reach for the syringes of medication each night, swallow each pill, it’s a reminder that I am still alive and kicking. I am blessed to have CF and see the world in an entirely different light than most. Cystic Fibrosis has given me a fighting personality that I will always have. I am much stronger because of CF. It has blessed and cursed me all in one. What a whirlwind of emotions, right?
I find peace in God. Romans 8:18 says the pain you’ve been feeling cannot compared to the joy that is coming. That is my verse. My pain now, is not going to be significant in the future when I am healed.
Here’s another one of my favorite things:
FEAR means two things.
Face Everything And Rise
OR
Forget Everything And Run.
I am going to Face Everything And Rise. Rise against CF.
Jennifer Nelson
Battling2Breathe 