Don't Forget To Fight:
I'm not the toughest person, but I'd say my Cystic Fibrosis has done a great job of toughing me up. I mean that in a good way. I have endured a lot of needles, surgeries, pain, doctors, and more. But because of these experiences (some I'd call traumatizing) have made me realize that I can face anything. I'm not afraid to work hard for what I want and I know how to deal with anything life might throw at me.
Well right now, life is pretty good. I haven't been on IVs at all this year, only in the hospital for 1 night (for my stomach tube surgery) AND (other than post surgery weight loss) my weight has been stable and slightly increasing ( very slowly). Overall, it has been a pretty stable year. Granted I couldn't work a lot of the year do to my stomach hole leaking issues, then the surgery, plus I've had some weeks where my intestines were acting up (tiny blockages, etc). Still this is a big improvement from 2013 (Here's a reveiw of 2013 post). 2013 was full of hospitalizations and other issues. So I felt happy all this year with my "lack" of serious issues.
BUT I know this 50% lung function and 99- 100 lbs I weigh isn't good enough. I should be at my baseline of 55-57% lung function and 107 lbs.
Sometimes I think the easier years (which 2014 was even with all my stomach tube issues/ surgery problems) can make me complacent.
What does complacency and having CF look like?
It's so easy to not feel the need to push extra hard when your life and your CF is going okay for once. Perfect example. As you have read before my best year was 2011-2012. Why? Because I had to fight hard, I was in a rough position in 2010-2011. I rebooted my whole life. I went from 38% lung function to 60% in two years. I did 100% of my meds (some days even extra albuterals). I walked/jogged at least 3 times a week.
Picture: I used my treadmill more, haha I used to turn my Computer moniter to face the treadmill. I'd watch movies while walking/jogging! Not so much this year... :-(
I ate high calorie meals. I got my weight up to 111 (heighest ever) in the summer of 2012. Why did I do so well? I stayed focused becuase I was beyond scared. I had to work hard. My health was so low at that point my only option to kick my butt in gear. So I did. When you think your headed for a lung transplant believe me you will do anything to keep your health up!
However, when your having a good year (you start to get to focus on other aspects of life, like school, career, etc). The problem is once I start allowing myself to use more of my time to do school, work, or other things then I start to lose time to exercise. I tell myself it's okay..."Well, my lungs are still in the 50s and my weight is decent considering..." so I continue to focus on school and work. However, over time I lose engery and the ability to walk as far (where shopping for groceries can be difficult). That's where I am at now.
So it really is quite a challenge balancing all the different parts of life and CF. I may be tough and I have the scars to prove it, but that doesn't mean I can be in 5 places at once doing my nebs, exercise, schoolwork, and eating, cleaning the house, all at the same time. Ha, wouldn't that be nice though.
So for me even though this year has been good I know I need to step it up. I need to get back on track. I know I'm not perfect and I will fall behind sometimes. Luckily, I have certain times in my life where I can realize I'm off track. And better yet, I have family and friends surrounding me that help me get back on track.
It may seem silly that I can't keep on top of these ( follow my routine), after dealing with Cystic Fibrosis my whole life (a whopping 29 years so far). But maybe this lil description will help. Another CFer posted this online and I think it really explains everything in a way that helps people understand why I can fall behind, It may seem harsh. But it's pretty real for a lot of the CF population.
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I'm trying to make some BIG changes to get back on track. Hopefully, my future clinics will show the work I'm putting into my health. Time for me to REBOOT! REBOOT! REBOOT!
Oh and I'm super excited to head to my hometown this weekend, we have Andrew's Family Christmas and some other fun plans! Can't wait!
I'm not the toughest person, but I'd say my Cystic Fibrosis has done a great job of toughing me up. I mean that in a good way. I have endured a lot of needles, surgeries, pain, doctors, and more. But because of these experiences (some I'd call traumatizing) have made me realize that I can face anything. I'm not afraid to work hard for what I want and I know how to deal with anything life might throw at me.
Well right now, life is pretty good. I haven't been on IVs at all this year, only in the hospital for 1 night (for my stomach tube surgery) AND (other than post surgery weight loss) my weight has been stable and slightly increasing ( very slowly). Overall, it has been a pretty stable year. Granted I couldn't work a lot of the year do to my stomach hole leaking issues, then the surgery, plus I've had some weeks where my intestines were acting up (tiny blockages, etc). Still this is a big improvement from 2013 (Here's a reveiw of 2013 post). 2013 was full of hospitalizations and other issues. So I felt happy all this year with my "lack" of serious issues.
BUT I know this 50% lung function and 99- 100 lbs I weigh isn't good enough. I should be at my baseline of 55-57% lung function and 107 lbs.
Sometimes I think the easier years (which 2014 was even with all my stomach tube issues/ surgery problems) can make me complacent.
What does complacency and having CF look like?
It's so easy to not feel the need to push extra hard when your life and your CF is going okay for once. Perfect example. As you have read before my best year was 2011-2012. Why? Because I had to fight hard, I was in a rough position in 2010-2011. I rebooted my whole life. I went from 38% lung function to 60% in two years. I did 100% of my meds (some days even extra albuterals). I walked/jogged at least 3 times a week.
Picture: I used my treadmill more, haha I used to turn my Computer moniter to face the treadmill. I'd watch movies while walking/jogging! Not so much this year... :-(
I ate high calorie meals. I got my weight up to 111 (heighest ever) in the summer of 2012. Why did I do so well? I stayed focused becuase I was beyond scared. I had to work hard. My health was so low at that point my only option to kick my butt in gear. So I did. When you think your headed for a lung transplant believe me you will do anything to keep your health up!
However, when your having a good year (you start to get to focus on other aspects of life, like school, career, etc). The problem is once I start allowing myself to use more of my time to do school, work, or other things then I start to lose time to exercise. I tell myself it's okay..."Well, my lungs are still in the 50s and my weight is decent considering..." so I continue to focus on school and work. However, over time I lose engery and the ability to walk as far (where shopping for groceries can be difficult). That's where I am at now.
So it really is quite a challenge balancing all the different parts of life and CF. I may be tough and I have the scars to prove it, but that doesn't mean I can be in 5 places at once doing my nebs, exercise, schoolwork, and eating, cleaning the house, all at the same time. Ha, wouldn't that be nice though.
So for me even though this year has been good I know I need to step it up. I need to get back on track. I know I'm not perfect and I will fall behind sometimes. Luckily, I have certain times in my life where I can realize I'm off track. And better yet, I have family and friends surrounding me that help me get back on track.
It may seem silly that I can't keep on top of these ( follow my routine), after dealing with Cystic Fibrosis my whole life (a whopping 29 years so far). But maybe this lil description will help. Another CFer posted this online and I think it really explains everything in a way that helps people understand why I can fall behind, It may seem harsh. But it's pretty real for a lot of the CF population.
I'm trying to make some BIG changes to get back on track. Hopefully, my future clinics will show the work I'm putting into my health. Time for me to REBOOT! REBOOT! REBOOT!
Oh and I'm super excited to head to my hometown this weekend, we have Andrew's Family Christmas and some other fun plans! Can't wait!
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