Wednesday, April 4, 2012

I Write About My Health Because.....

Oh, that's easy, because I don't want others out there to be an idiot like me.

For those of you who have been following this blog since the beginning know the full story about how this blog came to be, but for those of you who have recently come on board, let me give you recap:

I was a "sick" kid.
I became healthier through living a very normal life which included a lot of sports.
I always did 2 treatments a day, rain or shine, everyday of my life from ages 0 - 20.
I had over 100% lung function in high school largely due to my commitment to treatments and sports.
I moved out of the home when I was 20.
I no longer did two treatments a day everyday rain or shine.
I would do one treatment a day everyday rain or shine and two if "I had time".
I no longer was active everyday in sports or the gym.
My hospital stays increased.
My lung function declined.
I blamed it on CF.
I wasn't willing to adjust "me" because I wanted to "live life".
I continued making stupid choices.
I continued putting other things such as a social life, work, friends, vacations above my health.
My lung function continued to decline.
My hospital stays continued to increase.
I continued to "not let CF control me".
I almost died.
I "woke up".
I looked in the mirror.
I realized that in fact I was contributing to my decline in health.
I reflected on the days that I had higher lung function.
I found a common thread.
I always did treatments and I was active.
I started a blog to hold myself accountable.
I adjusted.
I started to do 4 treatments a day.
I started to run.
I started to go to the gym.
I put my health as my number one priority.
My lung function increased.
My hospital stays decreased.
I got married.
I had a baby.
I continue to do my treatments.
I'm still active.
Not only has my lung function increased, but my "life function" has as well.
I'm still adjusting.
I still blog about it.

Get it? Got it? Good! So why do I write about my health? Because I'd like to see other avoid the middle part of my life. I'd like others to learn some life lessons from my story instead of having to learn through the pain and trashed lungs that I had to learn through. I'd like to give others the sense of power and control that I feel over this disease.

I started this blog thinking that no one would be interested in my story. That no one would really care what I was doing everyday to get back to the "old me". I started this blog because I knew I needed to change. I knew I needed to do my treatments each day, everyday for the rest of my life. I knew I needed to challenge myself physically like never before. I started this blog because I needed an accountability partner. I started this blog for you. I started this blog for me.

I started this blog hoping to impact just one life in a positive way.

I've done that, my own.

Now, I'm hoping to impact two.

Comments (21)

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Ronnie, you are definitely having an impact on our family. I copy and paste many of your posts into a document I'm keeping for my (currently) one year old son with CF, it's part of a collection of positive stories about people living great lives with CF. I'm preparing this file for my little boy anticipating the tough teenager/young adult years. I dread the day he comes home and tells me he hates CF, why did this have to happen to him, etc. I know that day will come at some point, just hope these stories will get him back on track quickly. Thanks for everything you do.
1 reply · active 678 weeks ago
Wow, that means a lot. I have a feeling that you're son won't have to be inspired or motivated. My hope is the CF he experiences is nothing like the CF I have experienced :) I really do appreciate you leaving this very kind note though!!!
That positive outlook, the total adherence to a medical treatment regime (oh...we let our CFer have Christmas Day and her Birthday off treatment...if she's well!), exercise as a lifelong committment - to fitness and fun. If you want to live well, it starts with you. CF has an icky side, but it still remains only something my daughter has - not a definition of who she is. Healthy CFers who LIVE life is what we want our girl to see, to be . Never believe that you are writing just for you xx
1 reply · active 678 weeks ago
Sounds like you've got being a CF momma down if there is such a thing :)
I'm willing to bet you've touched more people than you'll ever really know.
1 reply · active 678 weeks ago
Maybe, but only because I often frequent crowded places :)
Great post, it's eerie how similar my own timeline is to yours. It just took me a little longer to wake up and start doing things right. And hey it turns out that getting out and living life and doing the right thing for our health aren't mutually exclusive : )
1 reply · active 678 weeks ago
I have a feeling that many of us have similar timelines :)
This is an amazing post, Ronnie. Being a CF mom, I tried to raise my daughter Samantha like I would raise a non CF child. Of course she had to do treatments and at times she was stuck in hospital...but that did not stop us from doing normal everyday things. And boy, my daughter was strong! She never complained, she was full of positive energy. Sadly health care professionals in Germany made a lot of wrong decisions and we lost her last battle just recently. But that is a whole different story.
2 replies · active 678 weeks ago
I'm sorry to hear about your loss. I do what I do for women like your daughter. I won't stop until the CF I know is different for the next generations.
It is so good to hear that, Ronnie. It means a lot to me. And despite all of my sadness and grief you just put a smile on my face when you wrote for "women" like my daughter. She was a very little woman - only 4 years old. :-)
my message, so here I go again:

I just wanna say, Ronnie..keep blogging, keep spreading your positive attitude. You are an amazing person and in many many ways a role model for a lot of people..not only peeps with CF. Thank you for everything you have done and for everything you will do in the future. last part of my message, so here I go again:
2 replies · active 678 weeks ago
Thank you so much for taking the time to leave that comment Laura. I will continue blogging as long as you keep reading.
I am gonna keep reading for sure, Ronnie. I always told Sammy what you wrote and she loved your pictures a lot. She was all excited about your daughters birth, it was so cute.
sorry, my computer kinda messed things up, so it should read : the computer did not post the last part of my message, so here I go again, sorry for messing things up
I'm really glad that it worked out for you this way!! But I have a comment to make. It's not always that sports en medicins keeps us healthy. My story is more like this:

Beginning at teenage years, always did my treatments, took my medicines, played sports, danced and sung. But my LF decrease about 3% /year. I go live on my own, do the same treatments, and cut out the sports, and my LF keeps decreasing (5%/year) I have to go live with my parents again, do even more reatments, go often to the gym, but still my LF decreases..

So I'm sorry I'm not as motivated for sports as you are, but they didn't bring such good things too me ;) But I'm glad it did for you, and I definitely think that If I DIDN't do sports, my lf would even decreased faster..

greetings Tamara
1 reply · active 677 weeks ago
There are definitely exceptions to the rule. Sounds like you gave it 100%, 100% of the time and that's all you can do. You should be very proud of that!!!
I love this post! I made those same stupid mistakes when I was younger (25 now) and started a CF exercise blog a few weeks ago to try to motivate CFers to exercise. I was also extremely healthy in high school and played sports, but when I went to college....wellllll there went all those good years. Just recently my brother got a double lung transplant and it really opened my eyes. So now I'm training to run a 10k by the end of the year and just passed up the time of year when I always end up in the hospital and I feel great. Cheers to your awesome blog to also motivate others!
1 reply · active 676 weeks ago
So great that you are training for a 10k!!! Are you using a specific training program? I also just checked out your blog, well done!!
Thanks! I don't have a specific program other than having a personal trainer helping me out twice a week and giving me tons of tips for all the days I'm in the gym on my own. I'm about to kick everything up a notch :)
1 reply · active 676 weeks ago
Very nice!! Does s/he have you running intervals or just running for time?

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