Thursday, July 28, 2011

Blogger Challenge!!

A great bloggy friend posted a challenge for us fighting chronic illnesses. So here is my challenge response:

I think that our generation - the 20+ year olds - with CF have it much different than the "newbies" being born today. Our parents weren't aware of as much, there wasn't as much known, the medications were different, the treatments were different, things were just plain different. However, we are still here, living, getting older, having babies and transplants. So somewhere along the lines our care transitioned over to the "new" care, but did it happen in time?

When I was younger I was beat on by my mom. I know I was supposed to do Albuterol with .09% saline as my nebulized treatment. I ran around like any normal kid did, only I coughed and hacked the whole time. And I ate like a pig. But my lung function was never high. Looking over my chart I have never been above 80% and really I don't even know if I made it that high. As far back as I can remember, being in the upper 50s was my thing. Maybe I would have been higher if I had been more compliant as a teen. But as my friend mentioned in her post, when you don't notice a difference its hard to continue on.

My medications didn't make me feel better. If anything they made me feel worse. I got shaky and coughed - which at the time I despised! I wanted that "normal" teenage life. I got better as I got older, especially after my first hospitalization at age 18. But I didn't truly become compliant until my mid-twenties. Then I discovered how hard life was without my medications. Compliance wasn't so much about helping my lungs live longer, it became helping me to breathe and live my life.

I sometimes wonder if I had taken all my medications the way I was supposed to from diagnosis on, would I be facing a transplant evaluation? Or would I still be working full time and pushing myself just as hard? I will never know, but I do know I don't regret one thing I did, or did not do. I lived those years of my life as I wanted. I complied with myself. If that sends the doctors to say no you can't be transplanted then I will deal with that. But I doubt it would. I am compliant now. I do my nebs, I take my pills, I do my vest and I exercise when I have the energy. I cough up the goo when I need to. I go on IVs when I need them. I listen and I am proactive. I have changed. People can change.

Diseases are very unpredictable. They can change at the drop of a hat. They make their own rules and they don't listen when they are screamed it. If someone does what they are supposed to do 24/7 they are still going to face the "true" disease. Maybe it will be pushed back a few years or maybe it won't. But no one knows that at the start. No one knows what their life is going to be - terminal illness or not. Should you be compliant? YES. But you need to figure out what compliance means to YOU. Do you allow yourself to miss a treatment here and there because of life? That's fine. Do you skip treatments daily and probably only do a few during the week? That's not fine - that's not compliance. Compliance is doing the best you can.

Now I pass the challenge torch on to my bloggy friends. Here are the "rules":

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.


  1. I forgot to post the rules in mine! Oops!

    I like this though. What compliance is to YOU. That's a good call. I smoked on weekends in high school. I had a few years where I was like "fuck this noise" and skipped nebs at least once a week. I grew out of it. Now I'm like super neb lady and MAYBE skip once a month (maybe!).

    There's still a point where someone who smokes every day, never takes meds and still goes "I'm compliant for me" where you have to be like "uhm no". But I think past experimenting, past growing shouldn't count against it. I think an occasional skip is okay. As long as you're mostly trying your hardest and all that stuffs.

    I also like that you don't regret any of the shit you did years ago. I don't either. Even if I was facing tx right now, I wouldn't regret it. Because I chose to do that shit knowing what it meant, and I chose it anyway. So that's that. I've mostly enjoyed my life as of yet. That is in part because I have been careful about my meds for years... and it's also in part because I've skipped and had my fun too. You need to have a balance.

    ...holy hell I ramble like a fiend. /nonsense (Also... I blame Ambien!)
    -Emily65Roses (again, LJ is being a huge lame loser and not cooperating, so I can't sign in with it)

  2. LOL Em! We are definitely on the same page :) We are all young and teens and that's what teens do....they experiment, they push the envelope, they defy their parents. CFers do the same. Its all a part of growing up. But just like my brothers indiscretions shouldn't affect him now (unless of course it was like heroin use and he got some STD from it lol), our indiscretions shouldn't affect us (again unless it was major).

  3. Ah, the "shoulda, coulda, wouldas" that we all look back on. No regrets, but always curiosity. Love this post, Amy. You are wonderful.