"The Princess and The Pauper"
The Life of a Cystic Fibrosis Patient
(The Princess and The Pauper)
In this blog, you can expect to follow me through my life experiences, both past and present. Stories of the many people that have impacted my life. Family, doctors, friends, nurses, and other patients. Near death experiences, of which there were many. Updates. Articles.
There is a story here. There are many, in fact, all leading up to the biggest story of all, my life. I hope it helps or educates at least one person and if it can't be for anyone else? I hope that the one person it helps, is me.
For the majority of my life, I hid my disease, from everyone I could. I never looked sick, so therefore, I never needed to tell anyone that I was dying. What importance would it have? What difference would it make, other than people treating me like a charity case? I didn't want that. To me, I was strong, I was capable and for all intents and purposes, I was normal and just wanted to lead - what I thought to be - a normal happy life. Above is a picture of me, would you have known anything was wrong with me, had I not told you? I fooled a lot of people for a very long time.
"The Princess and The Pauper."
In one of my favorite childhood Disney books, Mickey Mouse's "The Prince and The Pauper." the tale of two very different mice living two very different lives is portrayed. I felt for a long time, that was my life. To a lot of people I was the outgoing, fun, sweet girl. I did everything children/teens my age did. Hell, maybe even a bit more.
But the other side of me was sick, constantly. 20+ medications a day. Pills, supplements, inhaled medications, antibiotics and when that wasn't enough, it was extensive annoying tests, procedures, endless amounts of needles (which I will speak on extensively at some point due to my severe phobia and possible PTSD with needles) 2+ week hospital stays multiple times a year. Surgeries. Depression. Anxiety. Not only did I deal with this monster of a disease, I dealt with constantly relocating, abuse, unstable and unhealthy home environments. Absent biological father from age 7 onward. Poverty. Drug abuse (not me) amongst other things that I may choose to share here, as I build confidence and get comfortable with being so open and vulnerable.
Well, if I hid it for so long, why come out now?
It was a slow progression into speaking my disease into existence. It was hard and something I struggled with. It caused endless amounts of severe depression and anxiety for a multitude of reasons, as you can imagine.
I became pregnant in October of 2011. I was seventeen years old and that's where it started. I won't go into detail here about that, I will save it for another blog post. However, the body modification I needed to undergo to help make sure my son had a fighting chance, was unavoidable. Both procedurely and visually. I also stayed a total of 6 months in the hospital, which was hard to explain to people who knew me because I was a junior in highschool. People take notice if youre out for only a couple days, let alone several months.
Due to having my child and the toll being a mother took on my body, I needed yet another invasive body modifying surgery that once again, was a bit difficult to hide from those who I spent time with and especially those I was intimate with.
Slowly but surely, those I knew well, started to realize that I was sick. But I was always able to cover up the extent.
That was until recently- 3 years ago- my health took a steady clean nosedive downward and it was time to start my evaluation for a life saving double lung transplant. I needed as much help, love and support as I could possibly get and there was no denying it anymore.
I'm was and am dying. I'm not ashamed of that anymore. Being so close to not being here has made me so thankful that I ever got to be here at all. A quote I love very much and continuously keep in the back if my mind is. "Its not about the days in our lives, it's about the life in our days."
Follow my blog, my life, my stories and take it for what you will. A lesson, knowledge, a soap opera if it suits you- I swear sometimes my life needs its own theme song! Hell even if you just find my life interesting to read about. Then.. Welcome..
But the other side of me was sick, constantly. 20+ medications a day. Pills, supplements, inhaled medications, antibiotics and when that wasn't enough, it was extensive annoying tests, procedures, endless amounts of needles (which I will speak on extensively at some point due to my severe phobia and possible PTSD with needles) 2+ week hospital stays multiple times a year. Surgeries. Depression. Anxiety. Not only did I deal with this monster of a disease, I dealt with constantly relocating, abuse, unstable and unhealthy home environments. Absent biological father from age 7 onward. Poverty. Drug abuse (not me) amongst other things that I may choose to share here, as I build confidence and get comfortable with being so open and vulnerable.
Well, if I hid it for so long, why come out now?
It was a slow progression into speaking my disease into existence. It was hard and something I struggled with. It caused endless amounts of severe depression and anxiety for a multitude of reasons, as you can imagine.
I became pregnant in October of 2011. I was seventeen years old and that's where it started. I won't go into detail here about that, I will save it for another blog post. However, the body modification I needed to undergo to help make sure my son had a fighting chance, was unavoidable. Both procedurely and visually. I also stayed a total of 6 months in the hospital, which was hard to explain to people who knew me because I was a junior in highschool. People take notice if youre out for only a couple days, let alone several months.
Due to having my child and the toll being a mother took on my body, I needed yet another invasive body modifying surgery that once again, was a bit difficult to hide from those who I spent time with and especially those I was intimate with.
Slowly but surely, those I knew well, started to realize that I was sick. But I was always able to cover up the extent.
That was until recently- 3 years ago- my health took a steady clean nosedive downward and it was time to start my evaluation for a life saving double lung transplant. I needed as much help, love and support as I could possibly get and there was no denying it anymore.
I'm was and am dying. I'm not ashamed of that anymore. Being so close to not being here has made me so thankful that I ever got to be here at all. A quote I love very much and continuously keep in the back if my mind is. "Its not about the days in our lives, it's about the life in our days."
Follow my blog, my life, my stories and take it for what you will. A lesson, knowledge, a soap opera if it suits you- I swear sometimes my life needs its own theme song! Hell even if you just find my life interesting to read about. Then.. Welcome..
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