Late night thoughts

Being chronically sick is a funny thing, no matter how sick I am there is part of me that always believes I'm going to wake up the next morning and be okay. I spend most of my days being "good" or "okay" fort he sake of other people, but I truly believe that someday I am going to be better. I've been in a weird limbo the past year because my health has kept decreasing, but I'm still convinced that I am okay so I make plans for my future. When I think of waking up tomorrow I never consider that it could be a bad day full of chest pain and shortness of breath, I always see a tomorrow where I can run and skip and just be okay.
It's a really weird thing to realize that I still see myself as the healthy(ier) me from my freshman year of college. I went through a lot of emotional stress my freshman year of college but my physical health was at a peak I hadn't seen and have yet to see again. I was not only exercising regularly, but I participated in outdoor activities with my friends, like playing frisby. I couldn't imagine being able to run after a little flying disk today without hurting myself. Part of me gets upset when I think about the things I was able to do then and how I can't do them now, but part of me is so proud of myself. I am so grateful to those memories and I hold them so close to my heart in the hopes of returning to a healthy place where I can run and play again.
I hold such a reckless sense of optimism for my future sometimes I question if I truly have accepted the means of my condition, or if I am keeping myself locked in a fairytale.

I am so desperate to be healthy again, I just feel like I'm running out of ways to get there.

Hospitalization and The New Year

Check out my latest video, it covers my recent hospitalization and health problems as well as my goals for 2015!

Tell me what you think!

3 Steps Back

People constantly ask me what it’s like living with Cystic Fibrosis, or what it’s like to breathe with CF and those questions always puzzled me. I always stop and think about it and try to find the answers that I know they’re looking for.  When people ask me what life with Cystic Fibrosis is like I know they’re looking to hear the worst things, no one asks a question like that with the intentions of getting the highlights of my life.  After years of being asked and being curious myself I think I finally have a decent explanation.

One thing I’ve learned in the past few years is that as time moves on I seem to slow down.  It can be so easy to overlook CF from an outside perspective. There isn’t much that shows visibly for people to see, so it can be forgotten.  It happens quite often that I am left to follow because I can’t keep the same pace as everyone else. I fall behind a lot. For a long time I tried walking faster, but that only made things worse because then I would have to stop and catch my breath. I got into a the routine of just  falling behind, sometimes my friends would stop and wait for me to catch up, more often times they wouldn’t seem to notice my absence. It is fairly upsetting to think that you’re not worth the slower pace to others, that wherever it is we’re going is so much more important than the time we’ve taken to get there.  It’s a very isolating experience to see the value of your friendship reflected through people in this way, realizing that they may not even notice when you’re not there or they don’t even look back to see.

That is what it’s like living with Cystic Fibrosis, it’s like living three steps back. I spent a long time trying to keep up with other people, but that never really works.  I’ve learned to find comfort in my own pace; sometimes walking a little slower just means you get to enjoy the view a little longer. You really learn to let your senses override your thoughts and you get to notice and enjoy everything.  I know people say that life is more about the journey then the destination, but I think it’s more like a maze. You don’t know where you’ll end up until you reach the end.

Here I am

         2014 started with disappointment and shame, but as the year progressed I've done things that I only could have dreamed of, which really just proves that with hard work anything can happen. My health took a bad turn last November, and it has been a battle all year just to get back to a level of comfort and today a little over a year later I feel like I can finally breathe again. Being sick so constantly through the year gives me so much anxiety, my plans for the future turn into impossibilities and figments of my own imagination. Knowing that Cystic Fibrosis is a progressive disease holds its own weight, I know that a day will come when getting better just doesn't happen. I tell myself every day that if I had to be, I would be ready but I've faced those thoughts through this whole year and never once was I able to think “this is it, no more dreams”. The scary thing is that is what I expected would have happened, that someday I just wouldn't be able to dream or hope for my future anymore, but what I found was even scarier. My dreams went from being of world travel and adventures to just hoping that I would feel well enough through the next year to continue working.. I always thought my hopes and dreams would just disappear, but instead they just got pushed back by something more important. It’s so sad to imagine that my ambitions of being a successful business woman will be overcome by my dream to just be able to live. I ask myself what is a life lived just to live? I question whether my happiness is held within my health or is it somewhere else?  I don’t know where happiness comes from, but it is worth finding.

          This is my journey to being happy. There will be ups and downs, healthy moments and sick ones but it is my goal to find the joy and goodness through them all. I believe that there is something to be learned and found through the best and the worst times in our lives and it is my goal to share the lessons I’ve learned.

          I’m not the smartest or the most eloquent person and I may not fit the role of story teller very well, but this is the only story I have to tell, my own.