Friday, July 29, 2011

Compliance, Judgement & Progression

I'm taking this challenge that was presented through a fellow CF blogger Confessions of a Cyster The challenge is as follows.
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

This is so relative to me right now as I have been struggling to "manage" or "control" my CF. When the truth is I can't manage it or control it. I wish I could. I believe CF is maintained sometimes by how compliant we are, but I also believe that in some cases it doesn't matter how well you have taken care of your self this disease will take over for periods of time. My parents made me very compliant with my treatments, but they also let me skip treatments sometimes to live my life, because was the fight worth fighting for me to just be alive? No I was a child, I needed to live and enjoy the things kids enjoy like sleep overs, and camping. So as I grew into a teenager I stayed relatively compliant and have through my adulthood. Having become completely compliant in the past year, trying to re-gain some lost health.

I was recently criticized on facebook for supposedly being in denial about my disease progression, because I don't believe that what I have been going through for the past few months is, I truly believe there is an underlying reason. And I found myself defending MY illness to a fellow CFer. In his eyes I was in denial and needed to except the fact that my disease was progressing, because he had been through it and that's how it happen to him. Being in that position was weird, I was feeling like how do you judge MY CF story and MY progression based on your experience when we all know everyone with CF is so different. I hate the judging in some of the CF community! The your sick because you don't take care of yourself, or your CF isn't bad and that's why your healthy. I love to hear EVERYONE'S story's, whether they are in end stages or as healthy as a "regular" person. We all have our own story's, our own health stories, our own ways of dealing with OUR disease.

Disease progression is scary. I get scared every time I get admitted to the hospital, but I also don't let it run my life or overrun my thoughts. I do what I need to do to get past it and get home and get healthy. Do I cry when my son gets sad because he misses mommy, yes. That's why when I am home and healthy or feeling well I make every moment I can remembered and special for us. My worst fear when he was a baby was that I wouldn't live long enough for him to remember me. Did I believe I was dying anytime soon, no, but I still had those thoughts, I think because growing up I was told I wouldn't live as long as I have. As he's gotten older I know he will remember, and what I want him to remember is the times I was home and healthy, and our family vacations, and all the good stuff. Not the nights he cry's because I'm in the hospital. Living my life to the best of my ability is all I can do for him and for me. And if I miss a treatment every once in a while because we are out having fun well then so be it, I'd rather him remember that moment we were having then remember that we had to stop for a treatment. Some would argue that missing a treatment could take me away sooner, and would defeat the purpose of enjoying my days with him. To them I say, being alive isn't always living.

Not sure if I followed the "rules" but I went where my heart felt.


  1. I love this, Jamie! I, too, have had to explain/defend my cf experience for others in the cf community. It's so frustrating. I also agree with the sentiment that on occasion it's okay to skip a treatment here or there in order to get some good living in! Hugee hugs to you!!!

  2. Great job! I too have had to defend myself and my feelings. Feeling judged does not feel good at all! My favorite part of your post is "being alive isn't always living." Well put! I try to live my life in the same way.