Monday, August 1, 2011

Blogger Challenge: On CF Progression and Control

A fellow blogger and CF warrior, Piper, recently presented a challenge to the CF community. Basically, she asked us to write a post explaining our thoughts and/or personal experiences dealing with CF progression and control. Since this is a topic that has been on my mind even more than usual lately, I knew right away that I would be participating in this challenge.

As some of you already know, I've had a pretty rough go of things on the health front this year. In the past 12 months, I've been hospitalized 5 times. This is very unusual for me and has been incredibly frustrating (terrifying, maddening, life-disrupting... pretty much any of those descriptions fit the bill). I recently witnessed an exchange between two CFers in which one was told, somewhat unkindly, by the other that she must come to terms with the fact that CF is a progressive disease. "I've been where you are," he said, then went on to describe all the terrible things he's been through and effectively ended the conversation by telling her that she needed to stop living in denial and accept the reality of CF: a steady and unavoidable decline in lung function and overall health.

I don't necessarily agree with the thought that CF is progressive and the best thing we can do for ourselves is accept that cold, hard fact. It feels a little bit like giving up to me.

On the other hand, there are people who believe that CF is an entirely controllable disease. The school of thought seems to be that through total compliance with medications and therapies, plenty of exercise and a positive attitude, anything is possible! Hmmm... I don't really agree with that either.

In regards to CF, I lived comfortably in denial for much longer than I care to admit. Even though I lost a sister to CF, I figured that I was the exception -- I would always be healthy. I slacked on treatments and skipped out on clinic time after time, and do you know what? I was really healthy for a long time! At some point during the years (likely when I moved in with Adam, since he's always pestering me about taking care of myself) I became more compliant. There was still room for improvement, but I was doing better than I had in a very long time - at least one treatment a day, staying active, and going to clinic much more often. I was starting to realize that I may not be the exception, that there might be something to this whole "disease" thing, but I still told myself that I would do better when/if I started getting sicker.

After Morgan was born I had an experience that forever changed the way I look at things. When she was three months old, I became very sick. I was sicker than I'd ever been up to that time (or have been since). There was a moment I remember as vividly as if it were yesterday; I was sitting in bed on 6 liters of oxygen, unable to even walk across the room to use the bathroom on my own, feeling absolutely miserable, seriously questioning if I was going to wake up the next morning. I wondered is this it? Have I wasted all the time I've been given? Am I really going to leave my husband and baby alone? It's a desperate feeling, believing you may be out of time and knowing there is so much more you could have done for yourself.

That was "my moment". Something inside me changed that day and I've spent every day since then making a conscious effort to kick CF's ass. Sometimes I feel like I'm not very successful -- I've been totally compliant with treatments, I've exercised like a good girl, and I've cut back on hours at my job to dedicate more time to taking care of myself. I've done everything that I should do, far better than I ever have, and I've still had the most difficult year of my life (health-wise). Still, I refuse to chalk it up to progression or accept that this is my new norm. I've promised myself that I'll do everything within my power to fight this monster.

Which brings up a good question. What can we do? How much control do we really have over this ugly disease? Personally, I don't like to say that CF is "controllable". I feel like saying that it's controllable almost implies that those who have lost their lives to CF have done something wrong; that they didn't try hard enough; that they would still be alive had they just done more for their health. It would imply that my own parents could have, should have, done more for my sister. Maybe she just didn't want to live badly enough. Maybe if Mom and Dad had forced her to exercise more or if she would have been just a little more positive about things she'd still be here. Do you see how ridiculous that is?!?!

I haven't even begun to discuss how different CF is for everyone. Take my family for example: my sisters and I have the same gene mutation, we were raised in the same environment --we share DNA for cryin' out loud!-- yet our stories are so very different! Shannan was only 14 when she passed away. I required three sinus surgeries by the time I was 10, my sisters didn't have any. I was able to get pregnant, Teresa wasn't. The differences between three sisters are endless, which just goes to say that one person's CF cannot be compared with anyone else's. Your experiences are not mine. My CF is not yours.

So -- "CF is progressive, deal with it" or "take control, CF is powerless" -- which end of the spectrum do I find myself on? I can't really answer that. I don't think a person can pick a side and commit to staying there forever. In my limited experience with CF I've bounced from one end to the other and, at one point or another, I think I've landed everywhere in between. Chances are that I'll continue changing my opinions and views as I experience new and different things. What I do know for certain is that this disease is difficult enough to deal with on it's own, there simply isn't room for judgement, guilt or criticism.

And so I'll continue to take each day as it comes, doing my best to manage my CF.

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Wanna participate in this blogger challenge? Here are the guidelines: 

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.


5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

7 comments:

  1. A powerful blog Jenny. You make so very many valid points. Hope you are feeling much better. ((Big Hugs))

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  2. It's like you are in my head! Get out! Get out! :-)

    I feel the same way, my dear.

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  3. I love this post, Jenny! We are all unique and we don't usually have a say in where our CF path takes us. I hope you're feeling better by the minute!

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  4. Great blog Jenny! I feel like so many of us have similar feelings about this topic. You do everything you can stay healthy so you can live your life & accomplish your dreams but when out of know where CF kicks you in butt you can't let it stop you from working hard and dreaming. CF is unpredictable & so unique for every single person.

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  5. Great Job Jenny! I, of course agree with everything you said :-)

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  6. Thanks, friends! I certianly don't expect everyone to agree with me, but it sure feels nice knowing at least some of you do. :)

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  7. I'm sad that you had to have that moment, but I'm thankful you used that moment in a positive way rather than an,oh well, I can't do anything now, kind of way. I'm so thankful I've gotten to know you. I hope you are doing okay and that your health has stayed good since you got out recently!

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