I want to scream!
I feel the rage, the pain, the wrath, and fear building up in my chest.....
Too many of my friends with Cystic Fibrosis have passed away this month alone. One friend was blessed with the call for lungs today. I'm praying hard for you Piper!
I feel like an absolute idiot for wandering away from livejournal for such long periods of time. Or letting this disease dictate what I say. Or having my mind draw a blank. I've always been a master with my words. Writing has always been my art. Singing was one of my favorite things to do. I was one of the top in my class. CF decided to be a dick and damage my lungs.. And my last year of highschool I had to give up chorus, and have classmates push me around in a wheelchair... I had my oxygen. I did my IVs. I got stared at. I was more angry with the fact this disease was stripping me of my ability to do anything... Sing, run, dance, anything that took any energy whatsoever. I missed running through the woods bouncing off of trees and leaping over creeks and fallen trees.
At 18 I was showing signs of lung failure.. I was on oxygen often. I graduated. I would have went across the stage with my wheelchair and oxygen. But luckily my health gave me a break and I walked myself over to receive my diploma after 13 years of hell. Hell of trying to keep up. The bullying because of my constant coughing. Or the jabs for getting out of gym. Do you think I wanted this? I was allowed to take aquatics class two years in a row. Low impact, and great for the lungs. But when I changed schools, I sat in a study hall.
At 19 my lungs were to the point where my doctor sat me down. And I knew what was coming. I was calm... An odd sense of peace washed over me. It was time to start thinking about getting listed for lungs. And I denied it.. I was still in the 40's with my lung function. I spent my 20th birthday in the hospital. And I almost died. I had a strong spiritual awakening then. I felt a sense of duty.
Not even 4 months after I turn 20, I had the talk again with my doctor. This time I agreed. Still calm, still at peace. What was there to fear at this point? Die without it? Die waiting? No damn it, I'd die trying.
After I got out of the hospital late spring, I was what I thought was fine. I guess you get used to dying. In June, my family found me face down on the floor in my bedroom doorway... My mother heard me literally drowning in my mucus.. When they rolled me over my pupils were fixed...large.. Lips blue.. Mucus pouring from my mouth.. It took the paramedics nearly an hour just to get me stable enough to transport to the hospital. Where my mother was left standing alone.. But she wasn't... We both know an angel was with her. An old lady approached her and handed her an angel in a stone that said "strength".. She told my mom she "needed it". When my mom looked up to thank this little old lady.. She was gone.. My mom had to call my fiance, Stephanie who was also in the hospital in Florida. I was being worked on for hours.. So many containers of puss and fluid suctioned from me... And a three day coma. Which I remember I was surrounded by angels whispering and glancing at me. Falling to my knees I realized I was no longer in my body. I remember telling them I have to much I need to do. I can't go yet. Then there was darkness.. PAIN.. then I literally felt a cold energy going down my body from head to toe. I felt like I was clawing my way back into my flesh. Then my eyes sprang open. And I woke up violent. I couldn't chew through the tube. I couldn't growl.. or scream.. or cry.... The tubing blocked me from vocalizing my terror. I had NO idea what was going on. All I remembered was falling asleep at home, and then angels. I thrashed in my bed, broke restraints, pinned down and I was biting viciously at the bite guard on the tube blocking my screams. I began screaming in my head, "Breathe Kina!!! BREATHE DAMN IT!!!" I heard a voice and my vision was still blurry. I saw a white coat.. I heard a man telling someone I wasn't going to make it off the vent at this stage in my disease...
"WHAT THE HELL?!!?" I thought.
The person he was speaking to was my mother. And that made me feel as if I lit on fire.
I began hyperventilating. I figured out how to breathe on my own on that machine. Lets say I was off within an hour.. And had some choice words to scream..
I wasn't here for three days...
I eventually made it out of the hospital. Spent a few goods months having fun in the summer.
I was listed on the list the day Steve Irwin died. When my mother called me and told me, I thought she was playing a bad joke....
Few hours later I am listed for lungs.. That's when the fear hit. Someone is going to die. And I will live. IF I get the call in time.
I didn't wait long. October 17th 2006 I got transplant! (Sadly I watched Texas Chainsaw Massacre that night... The nurse tried calming me down in the OR before knocking me out. She asked me "What movies have you seen lately?" She said I lost all color.
"I am replaying the scene the crazy man pushes the chainsaw through the back of the driver seat and through the girls chest in The Texas Chainsaw Massacre......" I whispered while shaking.
All you hear is DRUG HER!!!
Dear sweet Jesus....
I woke up, I looked at my nails. They were pink. I was in one piece.. AND ALIVE. I looked at my family and passed back out.
I started living life. Stephanie got a second transplant and that failed and she died before I even hit my one year anniversary of transplant. And that felt like I was struck by the hand of God.
I was told I was in chronic rejection months later. And I finally flipped out in front of my doctors.
Was I going to die like Stephanie? Then Eva asked me to be in 65_Redroses with her. I agreed. Not knowing WHAT I was getting into. Or HOW BIG it was going to get. I was just hoping to raise awareness, and help one of my friends.
My chronic rejection stopped and began reversing..... And this was caught on camera.
I strayed away from Livejournal. I was really living.
This is where I feel horrible.. Several of my friends I met on here, have passed away... I feel so angry. Not at myself. Just this faceless monster that we keep trying to defeat. And it's claiming us with each poisonous breath it takes.
I was shown an amazing metal song by my friend Morgen.
"65 Roses"
And Still I Rise
http://youtu.be/mhB6OgTIp98
This has given me renewed strength. This song is so fitting to the anger and pain, yet all the love and hope. This song was written by Stephen Haynes for his wife, Angel who has Cystic Fibrosis. The video gives me goosebumps. And first time I ever watched it I cried and felt the emotions... Now I sing and scream along to it. (Sorry family, I know I'm annoying)
I'm also working on a project. But that's a secret for now ;)
Over and out today. (Oh please excuse the eye patch I got a laceration on my eye.. Effin Ouch!)
Too many of my friends with Cystic Fibrosis have passed away this month alone. One friend was blessed with the call for lungs today. I'm praying hard for you Piper!
I feel like an absolute idiot for wandering away from livejournal for such long periods of time. Or letting this disease dictate what I say. Or having my mind draw a blank. I've always been a master with my words. Writing has always been my art. Singing was one of my favorite things to do. I was one of the top in my class. CF decided to be a dick and damage my lungs.. And my last year of highschool I had to give up chorus, and have classmates push me around in a wheelchair... I had my oxygen. I did my IVs. I got stared at. I was more angry with the fact this disease was stripping me of my ability to do anything... Sing, run, dance, anything that took any energy whatsoever. I missed running through the woods bouncing off of trees and leaping over creeks and fallen trees.
At 18 I was showing signs of lung failure.. I was on oxygen often. I graduated. I would have went across the stage with my wheelchair and oxygen. But luckily my health gave me a break and I walked myself over to receive my diploma after 13 years of hell. Hell of trying to keep up. The bullying because of my constant coughing. Or the jabs for getting out of gym. Do you think I wanted this? I was allowed to take aquatics class two years in a row. Low impact, and great for the lungs. But when I changed schools, I sat in a study hall.
At 19 my lungs were to the point where my doctor sat me down. And I knew what was coming. I was calm... An odd sense of peace washed over me. It was time to start thinking about getting listed for lungs. And I denied it.. I was still in the 40's with my lung function. I spent my 20th birthday in the hospital. And I almost died. I had a strong spiritual awakening then. I felt a sense of duty.
Not even 4 months after I turn 20, I had the talk again with my doctor. This time I agreed. Still calm, still at peace. What was there to fear at this point? Die without it? Die waiting? No damn it, I'd die trying.
After I got out of the hospital late spring, I was what I thought was fine. I guess you get used to dying. In June, my family found me face down on the floor in my bedroom doorway... My mother heard me literally drowning in my mucus.. When they rolled me over my pupils were fixed...large.. Lips blue.. Mucus pouring from my mouth.. It took the paramedics nearly an hour just to get me stable enough to transport to the hospital. Where my mother was left standing alone.. But she wasn't... We both know an angel was with her. An old lady approached her and handed her an angel in a stone that said "strength".. She told my mom she "needed it". When my mom looked up to thank this little old lady.. She was gone.. My mom had to call my fiance, Stephanie who was also in the hospital in Florida. I was being worked on for hours.. So many containers of puss and fluid suctioned from me... And a three day coma. Which I remember I was surrounded by angels whispering and glancing at me. Falling to my knees I realized I was no longer in my body. I remember telling them I have to much I need to do. I can't go yet. Then there was darkness.. PAIN.. then I literally felt a cold energy going down my body from head to toe. I felt like I was clawing my way back into my flesh. Then my eyes sprang open. And I woke up violent. I couldn't chew through the tube. I couldn't growl.. or scream.. or cry.... The tubing blocked me from vocalizing my terror. I had NO idea what was going on. All I remembered was falling asleep at home, and then angels. I thrashed in my bed, broke restraints, pinned down and I was biting viciously at the bite guard on the tube blocking my screams. I began screaming in my head, "Breathe Kina!!! BREATHE DAMN IT!!!" I heard a voice and my vision was still blurry. I saw a white coat.. I heard a man telling someone I wasn't going to make it off the vent at this stage in my disease...
"WHAT THE HELL?!!?" I thought.
The person he was speaking to was my mother. And that made me feel as if I lit on fire.
I began hyperventilating. I figured out how to breathe on my own on that machine. Lets say I was off within an hour.. And had some choice words to scream..
I wasn't here for three days...
I eventually made it out of the hospital. Spent a few goods months having fun in the summer.
I was listed on the list the day Steve Irwin died. When my mother called me and told me, I thought she was playing a bad joke....
Few hours later I am listed for lungs.. That's when the fear hit. Someone is going to die. And I will live. IF I get the call in time.
I didn't wait long. October 17th 2006 I got transplant! (Sadly I watched Texas Chainsaw Massacre that night... The nurse tried calming me down in the OR before knocking me out. She asked me "What movies have you seen lately?" She said I lost all color.
"I am replaying the scene the crazy man pushes the chainsaw through the back of the driver seat and through the girls chest in The Texas Chainsaw Massacre......" I whispered while shaking.
All you hear is DRUG HER!!!
Dear sweet Jesus....
I woke up, I looked at my nails. They were pink. I was in one piece.. AND ALIVE. I looked at my family and passed back out.
I started living life. Stephanie got a second transplant and that failed and she died before I even hit my one year anniversary of transplant. And that felt like I was struck by the hand of God.
I was told I was in chronic rejection months later. And I finally flipped out in front of my doctors.
Was I going to die like Stephanie? Then Eva asked me to be in 65_Redroses with her. I agreed. Not knowing WHAT I was getting into. Or HOW BIG it was going to get. I was just hoping to raise awareness, and help one of my friends.
My chronic rejection stopped and began reversing..... And this was caught on camera.
I strayed away from Livejournal. I was really living.
This is where I feel horrible.. Several of my friends I met on here, have passed away... I feel so angry. Not at myself. Just this faceless monster that we keep trying to defeat. And it's claiming us with each poisonous breath it takes.
I was shown an amazing metal song by my friend Morgen.
"65 Roses"
And Still I Rise
http://youtu.be/mhB6OgTIp98
This has given me renewed strength. This song is so fitting to the anger and pain, yet all the love and hope. This song was written by Stephen Haynes for his wife, Angel who has Cystic Fibrosis. The video gives me goosebumps. And first time I ever watched it I cried and felt the emotions... Now I sing and scream along to it. (Sorry family, I know I'm annoying)
I'm also working on a project. But that's a secret for now ;)
Over and out today. (Oh please excuse the eye patch I got a laceration on my eye.. Effin Ouch!)