Does CF Consume Your Life?

Do you feel like CF consumes your life?

I get asked quite a bit if it feels like CF consumes my life since I do so many treatments and make sure that I exercise daily. I of course don't feel like my life is all about CF, but I thought it would be handy to put it into numbers to see if I could make it more clear. So, for this little exercise, I'll take 2012 vs. 2008. I'm taking these two years because they seem to be the average year before and after I got serious, or better put, "re-serious" about my health.

2008 in hours
Treatments: 547
Exercise: 182
Hospital Stays: 1680
Total hours devoted to cystic fibrosis: 2409 or 28% of all available hours

2012 in hours

Treatments: 1095

Exercise: 547

Hospital Stays: 720

Total hours devoted to cystic fibrosis: 2362 or 26% of all available hours

So when you look at those numbers, it looks like a wash right? I'm still devoting basically the same number of hours per year towards "taking care of business" when it comes to CF. However, looking deep into the numbers you'll see that in 2012 I am spent double the amount of time doing treatments, triple the amount of time exercising but less than half of the time in the hospital when compared to 2008. I don't know about you, but I would MUCH rather be doing treatments and exercising vs. being in the Hole. 

There are a couple more important numbers however that need to be thrown into this equation:

2008 lung function

Highest high: 79% FVC 68% FEV1

Lowest low: 64% FVC 54% FEV1

2012 lung function

Highest high: 87% FVC 74% FEV1

Lowest low: 78% FVC 63% FEV1

**It should also be noted that

a) I started a new predicted model in 2009 that would have actually had my 2012 numbers even higher compared to my 2008 numbers and

b) Since "on average" "they" say that "lung functions declines by 2% per year", my net gain is actually even higher!

Now, CF is definitely more about lung function and those numbers don't always correlate with how I feel. I can tell you this without a doubt though, if I had to quantify how I felt in 2012 vs. how I felt in 2008, it wouldn't even be close.

In 2012 I could...

breathe better.

laugh longer.

run further.

sleep sounder.

expect a brighter future.

So if 2012 was an average year of awesomeness, 2008 wouldn't have even of registered on the same scale.

We all know that cystic fibrosis is about more than just numbers. But sometimes, numbers can help make things more clear. By looking at the numbers above, it's clear that the more I did for my health, the more my health did for me. Sure, a quarter of one's life devoted to anything seems like a lot, but I can tell you this, I've enjoyed the other 75% of my life a whole lot more in 2012 than I did back in 2008.

Cystic Fibrosis: Feeding My Worry "Addiction" Since 2008

**Written by Mandi (I know, it's not Monday)

Many of you that know me, know that I’m a huge worrywart. I’ll worry about anything. I worry even if it’s irrational and I know I shouldn’t. “You can’t worry about everything!” you’re thinking? Wrong. Hm, what’s the best example. Oh, I’ve got one. I worry about the crabgrass and if we’ll be able to get rid of it. Does that help you get the picture? Part of it may be because I like to keep my mind busy. I don’t like sitting around doing nothing, and somehow “worrying” feels like I’m doing something. The second part of it, I’m afraid, is just my nature. Somehow I convince myself that if I think about something, and worry about something enough, I can outthink it. Makes total sense and is rational, right? (Insert eye roll and fart noise with mouth).

Unfortunately, having CF as a part of our lives gives me something to worry about. I think many of us do this. CF provides an easy thing to worry about for those of us prone to worrying. When I’m not caught in the middle of worrying, I’m able to think about it rationally and realize that my worries are irrational! Most of my worry spurs from reading or hearing about other people. It seems like every day I am reading about a CFer being listed for a transplant, dying, or getting sick. Each story begins to get my mind spinning. Some stories rattle me so deep to my core that I find myself getting choked up, and the only thing that will calm me is walking over to Ronnie and just hugging him. It doesn’t happen all the time, but it happens enough that Ronnie knows the drill. He knows why I’ve randomly shown up on his lap, tears in my eyes, holding onto him so tight he could pop. I can’t tell you how many times I’ve said, “You’re not going anywhere, right?” To which he responds, “Right.” “Promise?” “Yup!” - like he, or any of us, can actually promise that.

The point is, I worry, yet I know my worrying doesn’t do anyone any good. So the question is then, how do we stop it? How do we help our rational brain teach our irrational brain how to think? I see this all the time in others in the community. We tend to focus so much on the negative - fueling our worry, concern, and flat out fear. Yet we let the encouraging, wonderful stories go in one ear and out the other. I’m pretty sure these days, the negative and the positive stories could go head to head. I read daily about new meds, people kickin’ butt with CF, and most importantly, I watch my husband faithfully do his treatments and exercise. But somehow, I haven’t learned how to focus on that quite yet.

So what’s the cure to all this worry? I think there’s a couple things. The first is time. Time to get more comfortable with Ronnie’s CF. Time to see everything that comes along with CF, the good and the bad, so I can watch Ronnie remain triumphant through each hurdle. Time to realize that Ronnie’s story is different than all 70,000 other stories out there. I wish I could speed up this solution, but I can’t. So I, like you, just wait, as each day turns into weeks, months and years. And I have noticed, that over the past 2 years, this solution is working. So I just sit tight, and look forward to the tomorrows - filled with less unknowns and more experience. The second solution I feel is trust. We all have something different that we put our faith and trust in. For me, it’s a trust in God. Trust that God has the plan already figured out. A plan that is in my best interest and a plan that is in Ronnie’s best interest. I need to better learn that my thinking and rethinking about scenarios and fretting over the what-ifs isn’t going to change God’s plan. I need to actually allow God to have the control I try to take by worrying. This, of course, is easier said than done. But the minute I turn my life and my fears fully over to Him, is the minute I’ll no longer be worried about what the future holds.

I know I'm not the only one that does this. So let's hear it. What gets you worrying? Have you found things that help you when you find yourself caught up in those fears and emotions? Have you found things that help you avoid worrying? Let me hear it.