TheDisneyDoll
DIS Veteran
- Joined
- Mar 12, 2014
Hello everyone!
I'm Marissa and I have Cystic Fibrosis. I want to start a thread that I could post and update. Since most of my life has revolved around me trying to be healthier to make trips to disney this seems like an appropriate place to talk about how difficult it is to live when you can't breathe.
I stole this paragraph below from a page i posted a while back but it's still relevant.
My health over the past few years stayed pretty steady. I even managed to train and run my first Half Marathon this past November.
Unfortunately in December I caught a strain of Influenza and that combined with the chronic pneumonia I deal with everyday took it's toll on my body.
I spent about 3 weeks in the hospital in December managing to get home just in time for New Year, but the damage was done. I had to restart antibiotics mid February for a few weeks and I was admitted into the hospital again in April.
I did manage to get discharged just in time for my trip to Disney World to participate in the expedition everest 5k which I completed! The week after Everest I was on a plane to the other side of the country to Disneyland to participate in the Tinkerbell half marathon weekend. Back in august I had been in great shape and registered for the 5k and the Pixie Dust challenge. My hospital time in April wasn't spent sleeping I made it my goal to train my hardest even in the hospital so I could complete the 5k and 10k. I kept my goal realistic because I didn't want to be disappointed or push myself to hard.
Unfortunately during the 5k it started to rain and by the end of it I was running a high fever.
Being stubborn and maybe a little stupid I decided I was still going to do my best at the 10k the next morning if i didn't finish it would only mark my distance goal to beat the next year.
I made it to the half way mark before I was swept. I thought I would be disappointed but I couldn't have been more relieved!
Well that run in the rain caught back up with me, I was admitted into the hospital a few days after I returned home from california. The doctors were really conerned because my lungs just weren't working well enough.
The doctor told me i had maybe two years left to live with the rate of deterioration i was seeing.
Two years.
The doctor advised me to cancel any travel plans I have and to stay home and focus on my health.
I'm not easily intimidated and to be honest the doctors statement didn't phase me at all. I've had several close calls where the doctors didn't expect me to make it but i've always pulled through in a round about way. I'm not afraid of death, not in the slightest.
What I am afraid of is spending the next two year following the doctors orders, staying home and working on my health and seeing no improvements and only continuing to deteriorate.
I was discharged from the hospital and I had a trip booked to Tokyo Japan the next week. My doctors were against me going, but being the person I am I went anyway.
And I had an amazing time!
I was supposed to do the Disney COllege Program in AUgust but even I am willing to admit that is to unrealistic for me at this moment in time.
instead I am looking into creating a clothing company that has disney inspired design, and I'm not giving up on my running dream either!
I am thinking about creating a run club for people with medical conditions so they can find the proper support and have the opportunity to participate in amazing events like Disney runs!
They sell out so fast now that people in situations like mine sign up and then have medical emergencies happen and are out hundreds of dollars and the mental toll of not finishing can be detrimental.
I want to encourage even those of us who truly believe they can't. We can do anything.
I'm Marissa and I have Cystic Fibrosis. I want to start a thread that I could post and update. Since most of my life has revolved around me trying to be healthier to make trips to disney this seems like an appropriate place to talk about how difficult it is to live when you can't breathe.
I stole this paragraph below from a page i posted a while back but it's still relevant.
My health over the past few years stayed pretty steady. I even managed to train and run my first Half Marathon this past November.
Unfortunately in December I caught a strain of Influenza and that combined with the chronic pneumonia I deal with everyday took it's toll on my body.
I spent about 3 weeks in the hospital in December managing to get home just in time for New Year, but the damage was done. I had to restart antibiotics mid February for a few weeks and I was admitted into the hospital again in April.
I did manage to get discharged just in time for my trip to Disney World to participate in the expedition everest 5k which I completed! The week after Everest I was on a plane to the other side of the country to Disneyland to participate in the Tinkerbell half marathon weekend. Back in august I had been in great shape and registered for the 5k and the Pixie Dust challenge. My hospital time in April wasn't spent sleeping I made it my goal to train my hardest even in the hospital so I could complete the 5k and 10k. I kept my goal realistic because I didn't want to be disappointed or push myself to hard.
Unfortunately during the 5k it started to rain and by the end of it I was running a high fever.
Being stubborn and maybe a little stupid I decided I was still going to do my best at the 10k the next morning if i didn't finish it would only mark my distance goal to beat the next year.
I made it to the half way mark before I was swept. I thought I would be disappointed but I couldn't have been more relieved!
Well that run in the rain caught back up with me, I was admitted into the hospital a few days after I returned home from california. The doctors were really conerned because my lungs just weren't working well enough.
The doctor told me i had maybe two years left to live with the rate of deterioration i was seeing.
Two years.
The doctor advised me to cancel any travel plans I have and to stay home and focus on my health.
I'm not easily intimidated and to be honest the doctors statement didn't phase me at all. I've had several close calls where the doctors didn't expect me to make it but i've always pulled through in a round about way. I'm not afraid of death, not in the slightest.
What I am afraid of is spending the next two year following the doctors orders, staying home and working on my health and seeing no improvements and only continuing to deteriorate.
I was discharged from the hospital and I had a trip booked to Tokyo Japan the next week. My doctors were against me going, but being the person I am I went anyway.
And I had an amazing time!
I was supposed to do the Disney COllege Program in AUgust but even I am willing to admit that is to unrealistic for me at this moment in time.
instead I am looking into creating a clothing company that has disney inspired design, and I'm not giving up on my running dream either!
I am thinking about creating a run club for people with medical conditions so they can find the proper support and have the opportunity to participate in amazing events like Disney runs!
They sell out so fast now that people in situations like mine sign up and then have medical emergencies happen and are out hundreds of dollars and the mental toll of not finishing can be detrimental.
I want to encourage even those of us who truly believe they can't. We can do anything.
thank you though!
