Finding a Future

Id like to start this post with a small warning that its not the easiest post to read. It may be a bit of a rant at times but Ive been doing a lot of thinking lately about my current life and my future and how my past as brought me to where i currently am and where im going. I dont usually bring my past up as its not a typical story and i suppose that some would consider it almost shameful or embarrassing but ive become very aware that its made me exactly who i am and its contributed to where i am in life and in my health, and so im making it a part of my story.

At an early age i understood there was a life expectancy for myself. I understood that my life would never be the same as everyone else my age (thats a bold statement as there are thousands and thousands of chronically ill children and teenagers in the world but im hoping you understand where my thought process is headed here), and i understood that perhaps the types of futures that others were planning would be a bit of a pipe dream for me to achieve.

Through maybe 13 or 14 i barely did my meds. Confessional time. I rarely did a nebulizer treatment and i was NOT going to be the weird kid taking pills before i ate. I hated my disease and i felt the need to hide it. Since i felt healthy i thought i didnt need it, i didnt realize how critical that would be to my health later in life. My mother never enforced my treatments and turned a blind eye when i said id do them later and never did. I wish now that she had kicked my ass, but she was also the type to sit around smoking knowing full well her child was sick...so wheres the surprise.

By 15 i was taken from her home and placed with my dad through Child Protective Services not just for medical neglect but because i wasnt showing up in school. I was getting in trouble i was mixing in with the kind of kids you dont need to be friends with and she wasnt capable of being a parent at the time. I was on a bit of a downward path and while at the time of the move i was furious and i felt ripped away from my entire life and uprooted, looking back at it that was the day that my life was saved.

My father forced me to do my treatments and while i still insisted on not showing up for class at least i went more often than not. I regret my teen years. I regret them so much, the bad decisions i made for myself would effect the rest of my life. My sister was my only constant rock through all this time.

By 18 i had moved out of my fathers house, in with my boyfriend of them time, dropped out of school, and then gotten married. I still wasnt doing my treatments and the parties we threw filled our apartment with cigarette smoke. I was a mess and i was slowly killing myself. By this time i had given up an on any type of future for myself and i was winging each day, this went on for a few years until i had a very bad medical scare in 2013. I caught the flu and within one week i found myself in the ICU on bipap and no sugar coating. They didnt know if i was going to make it. my lovely husband came to see my twice for about 20 mins each in the entire 2 weeks i was in the hospital. I didnt know about the online CF community i was alone, i knew i did this to myself, and i was afraid.

This was when i opened my eyes, i saw the fear in my sister that i wasnt going to make it, i saw my mom realize how bad my illness had become and i know a part of her knew this had all stemmed from the past. I made the decision during that stay that i wanted to live more than anything else on this planet. I wanted a life and i wanted a future, and not just any future, but the best possible one i could have.

From then on my husband and i split up. I began to do my treatments diligently and took every pill i had to take every day. I ate as much as i could to gain the weight i needed to keep off infections and i found the online Cystic Fibrosis community. Finding people to talk to who knew exactly what i was going through made life easier, some helped hold me accountable for my medicines and appointments and i did the same for them. It was life changing. Im so proud to call so many of these people my friends now, im not sure where id be without them.

My main point of all of this is that growing up i didnt see a future. All of that stuff that happened worse me down and i wasnt in a good place, i had given up. I had decided CF would win and that was that. However a few days ago at my transplant clinic after being listed for almost 8 months and having less than 29% lung function i blew a 32%FEV1 and my doctors agreed that i was healthy enough again to be listed as inactive on the list.

I felt tears welling up as it was evident that over the past few years the hard work and dedication to exercise and medication schedules has paid off. I was gaining back precious lung function which to me is equal to time. For the first time i saw myself in the future not just existing tangled up in oxygen cords or in a hospital bed but doing something i love. Today i sign up for GED prep classes to finally get started on finishing my high school education and hopefully be able to start taking college courses in the fall. For the first time im doing something with my time that i feel is worth while and meaningful, im writing a blog for CBS which is beyond what i ever thought id accomplish.

In a way my sickness is both killing me and saving my life. I gave up for a long time on myself. I let life get the best of me and i sunk down, i didnt have the support or encouragement that i do now though either. Im proud of myself and the decisions im making for the first time in a long time. Im going to make something of myself despite my illness. Im going to hold from transplant as long as i can and accomplish the most i can and post tx?? the sky is the limit for me i have no doubts now.