Treatment Tuesday!
Technically it's Wednesday... but still.
So here I am. My first post and I am currently sitting here doing treatments. Yay... boo.
I figured, like most other chronically ill bloggers, my first post will be the story of my illness. Which seems to be the story of my life, even though I try super hard not to let it be.
When people ask about my story or whenever they find out that I have CF, I just wait for the words... "Awe, you're so brave." "You're such a fighter." "I'm so sorry to hear that." "Terminal? Like terminal? As in dying?" It's usually one of those four statements. Please understand, public, that I do not want your sympathy. I am still human, I am still living a somewhat normal life. I don't want special treatment whenever I have more than enough treatments to do in the privacy of my own home. :p
So with that being said, here we go:
I was a sickling all my life. I'm not sure if I was tested at birth... if I did, then obviously it came back negative. But as I grew, my lungs worked harder and my body took a toll. Thanks to the horrible, traumatizing memories of being sick, I will always remember my young childhood. When I was 3, I had a doctor named Dr.Danzy. He was an idiot. My grandmother use to take me into the doctors all the time since my single mother worked 2-3 jobs at a time. Dr.Danzy always came back with the same exact statement. "No need to worry. She's just a sickling. She'll grow out of it. But for now, she has (insert sickness here)."By the age of 7, I had pneumonia 8 times, on top of countless other sicknesses that made my lungs ache.
The last night of my "normal" childhood, I was practically comatose in bed with double pneumonia. I just remember shivering and blacking out a lot. I remember thinking that I was going to die. As a child, I never even thought of death or really knew what it was, but I felt weak and I just remember wanting to sleep forever but my mother kept waking me up. I remember my mother hugging me tightly whenever she got home from her 2nd job at 2 in the morning. My grandmother and my mother fought. My grandmother wanted to take me to a specialist, claiming that "There is something obviously wrong with this child!" and my mother would always fight back and say that the doctors know what they're doing. Well that night, my mother gave into my grandmother.
I went to a new doctor the next morning and got a sweat test done in the hospital. I remember walking out of the hospital and shaking violently before collapsing on the sidewalk. My mom took me out to get ice cream to make me feel better.
Finally, after a day or so, we got a call... I was positive for Cystic Fibrosis. My mom held me and rocked me back and forth as we both cried. I didn't know what was happening but it broke my heart to see my mother cry. She just explained that I was very, very sick. I asked her if I was going to die... and she said "I don't know, baby". Neither of us knew what CF was so for me to randomly have it was just weird and scary.
After a long cry fest, my mom explained it to my brothers. My 2nd oldest brother/best friend was so upset that he ran off crying. He ran away from home for a day. That's whenever I knew that my dickhead brother actually loved me. That's whenever we became super close.
So at my CF doctor's appointment, they took x-rays, blood samples, mucus samples, sweat tests, weight, height, etc. At age 7 and a half, I weighed in at 35lbs. Being a very tall child, this was considered very, VERY underweight. One cool thing came back... My right lung was scarred. I thought it was bad but my doctor looked at me and said "This is your battle scar, wear it proud". So on my 15th birthday, I got the words "Just Breathe" proudly tattooed on my right rib cage.
Since then, my health has been coming up. My pfts normally staying between 70-90%. I even volunteered for the Vertex study back in 2011. It did wonders for me, but eventually, my body got use to it.
Now here I am, 2014, age 19. I weigh 145 and stand at 5'7. My pfts are currently 83%. I haven't had a tune up in almost 4 years. But I might need one soon... My pfts have been going back and forth lately but with the help of the gym, my treatments, and my family, I'm hoping to stay out of the hospital for another year.
So there you have it. My story. I'm Katie, and I have a chronic lung disease that sucks ass!
--Katie
So here I am. My first post and I am currently sitting here doing treatments. Yay... boo.
I figured, like most other chronically ill bloggers, my first post will be the story of my illness. Which seems to be the story of my life, even though I try super hard not to let it be.
When people ask about my story or whenever they find out that I have CF, I just wait for the words... "Awe, you're so brave." "You're such a fighter." "I'm so sorry to hear that." "Terminal? Like terminal? As in dying?" It's usually one of those four statements. Please understand, public, that I do not want your sympathy. I am still human, I am still living a somewhat normal life. I don't want special treatment whenever I have more than enough treatments to do in the privacy of my own home. :p
So with that being said, here we go:
I was a sickling all my life. I'm not sure if I was tested at birth... if I did, then obviously it came back negative. But as I grew, my lungs worked harder and my body took a toll. Thanks to the horrible, traumatizing memories of being sick, I will always remember my young childhood. When I was 3, I had a doctor named Dr.Danzy. He was an idiot. My grandmother use to take me into the doctors all the time since my single mother worked 2-3 jobs at a time. Dr.Danzy always came back with the same exact statement. "No need to worry. She's just a sickling. She'll grow out of it. But for now, she has (insert sickness here)."By the age of 7, I had pneumonia 8 times, on top of countless other sicknesses that made my lungs ache.
The last night of my "normal" childhood, I was practically comatose in bed with double pneumonia. I just remember shivering and blacking out a lot. I remember thinking that I was going to die. As a child, I never even thought of death or really knew what it was, but I felt weak and I just remember wanting to sleep forever but my mother kept waking me up. I remember my mother hugging me tightly whenever she got home from her 2nd job at 2 in the morning. My grandmother and my mother fought. My grandmother wanted to take me to a specialist, claiming that "There is something obviously wrong with this child!" and my mother would always fight back and say that the doctors know what they're doing. Well that night, my mother gave into my grandmother.
I went to a new doctor the next morning and got a sweat test done in the hospital. I remember walking out of the hospital and shaking violently before collapsing on the sidewalk. My mom took me out to get ice cream to make me feel better.
Finally, after a day or so, we got a call... I was positive for Cystic Fibrosis. My mom held me and rocked me back and forth as we both cried. I didn't know what was happening but it broke my heart to see my mother cry. She just explained that I was very, very sick. I asked her if I was going to die... and she said "I don't know, baby". Neither of us knew what CF was so for me to randomly have it was just weird and scary.
After a long cry fest, my mom explained it to my brothers. My 2nd oldest brother/best friend was so upset that he ran off crying. He ran away from home for a day. That's whenever I knew that my dickhead brother actually loved me. That's whenever we became super close.
So at my CF doctor's appointment, they took x-rays, blood samples, mucus samples, sweat tests, weight, height, etc. At age 7 and a half, I weighed in at 35lbs. Being a very tall child, this was considered very, VERY underweight. One cool thing came back... My right lung was scarred. I thought it was bad but my doctor looked at me and said "This is your battle scar, wear it proud". So on my 15th birthday, I got the words "Just Breathe" proudly tattooed on my right rib cage.
Since then, my health has been coming up. My pfts normally staying between 70-90%. I even volunteered for the Vertex study back in 2011. It did wonders for me, but eventually, my body got use to it.
Now here I am, 2014, age 19. I weigh 145 and stand at 5'7. My pfts are currently 83%. I haven't had a tune up in almost 4 years. But I might need one soon... My pfts have been going back and forth lately but with the help of the gym, my treatments, and my family, I'm hoping to stay out of the hospital for another year.
So there you have it. My story. I'm Katie, and I have a chronic lung disease that sucks ass!
--Katie