Here It Goes
As I sit here on my bed surrounded by an IV pole, my vest machine, news, meds, etc. I have one word that comes to mind, and that's grateful. I am beyond grateful to sit here and look around and see all of my medications, inhalers, and my big bottle of enzymes. When I was born my parents were told that I would die at the young age of eighteen. How horrific is that? Here is your brand new baby, but you only have eighteen years with her. Terrible.
When I was first born I stopped breathing, twice. One of those times I stopped breathing for two minutes. No one knew that it was because I had Cystic Fibrosis. This was the 90s' and it wasn't as common back then. Hospitals didn't check new borns when they are first born like they do now, new born screenings didn't exist. This was a stressful time for my family. A new born was just born who may or may not have health problems and my aunt was dying. I was born June 25th 1996 and my Aunt Beth died June 28th. She had neuroblastoma, a type of brain cancer. It sucks because I didn't even get to meet her. I would never know how she looked in person, hear her voice or her laugh, etc. When everyone went to her funeral I was at home with my moms best friend, who I now consider an aunt, and my grandma. They were looking after not only me but my monitor that I had to be put on. I was on it for a while, longer than necessary because of my worried mother. It was kind of like I security blanket for her I think.
Months past and still no answer. My parents were being told, multiple times, that there was nothing was wrong with me. They eventually were told that I had epilepsy. To make a long story short, the doctor that I had tried to drug every baby that he saw. That theory was out. Around Christmas my parents, in the middle of the night, took me to a different hospital. When I got there I had lost weight and was in respiratory distress, receiving breathing treatments every two hours. When a resident came in to see me he suggested doing a sweat test. Yes, you read that right. A resident.
Sure enough it came back positive and I had CF.
Even though I was just a baby having to go through all of this, I have been told by my family that I was the happiest baby around.
My mom loved the camcorder (as they called them back in the day) and literally taped my move. I was caught on camera, a few months old, throwing up and then laughing. I threw up and laughed right after. Who does that?! Overall I was a happy baby. I mean whats not to be happy about? I was breathing and that's something.
Now I'm 17 with a lung function of around 44%, still going strong.
I'm hospitalized often or do home IV's, but I can't complain.
I don't require oxygen at home, I can still attend school, and overall I'm relatively normal.
Basically I'm just a 17 year old girl that has a bit of a harder time breathing than others, but that's ok. It makes me appreciate the little things. I'm currently attending high school as much as I can. I don't do any extracurricular activities because frankly, I'm your average lazy teenager who would rather stay home and watch Netflix, yet somehow still wants to make a difference in the world. My favorite color is purple. I enjoy sports, but I don't feel like it's a good idea to play them because I am too clumsy for that. As of now I want to attend a college somewhere in Indiana to get my journalism degree and after that make my way out to california and then of course, make a difference in the world. That's really all I want to do. My true feelings about school is: It isn't everything. Sit in a room for hours and try to learn or go out in the world and live in the short amount of time we have? My biggest inspiration is a guy named Chris McCandless. He was amazing at school and once he graduated he said the hell with society and went and lived (and died) in the wild. Perfect.
I'm not your average person with a disease. I'm not a inspirational person or excelling in school or something like that. I'm merely average. I don't really know why I made this blog or whatever this is. I suppose I did because I'm an uninteresting person with nothing better to do than tell her life story. And maybe if you're reading this and you're uninteresting too then you should follow along.
When I was first born I stopped breathing, twice. One of those times I stopped breathing for two minutes. No one knew that it was because I had Cystic Fibrosis. This was the 90s' and it wasn't as common back then. Hospitals didn't check new borns when they are first born like they do now, new born screenings didn't exist. This was a stressful time for my family. A new born was just born who may or may not have health problems and my aunt was dying. I was born June 25th 1996 and my Aunt Beth died June 28th. She had neuroblastoma, a type of brain cancer. It sucks because I didn't even get to meet her. I would never know how she looked in person, hear her voice or her laugh, etc. When everyone went to her funeral I was at home with my moms best friend, who I now consider an aunt, and my grandma. They were looking after not only me but my monitor that I had to be put on. I was on it for a while, longer than necessary because of my worried mother. It was kind of like I security blanket for her I think.
Months past and still no answer. My parents were being told, multiple times, that there was nothing was wrong with me. They eventually were told that I had epilepsy. To make a long story short, the doctor that I had tried to drug every baby that he saw. That theory was out. Around Christmas my parents, in the middle of the night, took me to a different hospital. When I got there I had lost weight and was in respiratory distress, receiving breathing treatments every two hours. When a resident came in to see me he suggested doing a sweat test. Yes, you read that right. A resident.
Sure enough it came back positive and I had CF.
Even though I was just a baby having to go through all of this, I have been told by my family that I was the happiest baby around.
My mom loved the camcorder (as they called them back in the day) and literally taped my move. I was caught on camera, a few months old, throwing up and then laughing. I threw up and laughed right after. Who does that?! Overall I was a happy baby. I mean whats not to be happy about? I was breathing and that's something.
Now I'm 17 with a lung function of around 44%, still going strong.
I'm hospitalized often or do home IV's, but I can't complain.
I don't require oxygen at home, I can still attend school, and overall I'm relatively normal.
Basically I'm just a 17 year old girl that has a bit of a harder time breathing than others, but that's ok. It makes me appreciate the little things. I'm currently attending high school as much as I can. I don't do any extracurricular activities because frankly, I'm your average lazy teenager who would rather stay home and watch Netflix, yet somehow still wants to make a difference in the world. My favorite color is purple. I enjoy sports, but I don't feel like it's a good idea to play them because I am too clumsy for that. As of now I want to attend a college somewhere in Indiana to get my journalism degree and after that make my way out to california and then of course, make a difference in the world. That's really all I want to do. My true feelings about school is: It isn't everything. Sit in a room for hours and try to learn or go out in the world and live in the short amount of time we have? My biggest inspiration is a guy named Chris McCandless. He was amazing at school and once he graduated he said the hell with society and went and lived (and died) in the wild. Perfect.
I'm not your average person with a disease. I'm not a inspirational person or excelling in school or something like that. I'm merely average. I don't really know why I made this blog or whatever this is. I suppose I did because I'm an uninteresting person with nothing better to do than tell her life story. And maybe if you're reading this and you're uninteresting too then you should follow along.