Saturday, July 18, 2009

Do I Ever Get Sick of CF?

Instead of a video update tonight, I wanted to share this exchange between myself and a parent of a little CFer that I met on Twitter. If you're interested in following my Twitter account you can find me @RunSickboyRun.

Question from Twitter: i have a question, do you ever get sick & tired of having CF & having to do all the treatments?

My Response:
So do I ever get sick of having CF or doing my treatments? Yes and No. Let me explain, I have never nor will ever get sick of HAVING CF. See, I know no different. Since I don't know how the alternative feels, I don't know what I would "want" if it not for CF. To feel normal you may say; to which I would respond, what is normal? See I may have CF, but CF doesn't have me. Plus, who knows the type of person I would be with out. I could be a better person, but then again, I could also be worse. CF has shaped how I look at the world, my life, and my loved ones. I value the time I have on this earth and I don't take anything for granted. I'm actually thankful for CF and what it has done for my life. I know it sounds strange to some, but I constantly say that I am "blessed with CF". Do I have my struggles? Sure, but every one does. I have to learn how to deal with those struggles and navigate my life just like every one else. I love who I am (sounds a little cocky when I say it :)) and I know CF at least plays a minor if not major role in that.

As far as treatments go, of course it can be frustrating. But as with all things in my life, I try to spin it into a positive light. Since I know I have to be sitting many times during the day to do my treatments, I started doing more and more things online in order to compliment my treatment time. I'm a very active person and love to exercise and travel and I know without being healthy I can't do either of those things. So for me it just comes down to a "necessary evil" in my life. If I want to continue to live the lifestyle I'm accustom to, then I'll need to stay faithful with my treatments. It's as simple as that. If you want good teeth, you better brush and floss. If you want good lungs, you better do your treatments. I see it no different than that. I'm willing to make the small sacrifices (time to do treatments) in order that the rest of my day/life is enjoyable. I know too many CFers who sit around there house and complain about how terrible they feel and how much CF sucks. And I say, while you're sitting around feeling sorry for yourself, stick a neb in your mouth and put your vest on. It's all about putting yourself in the best position to succeed. The CFF has put a lot of money into giving us resources to aide us in navigating our lives and putting us into the best position to succeed. Why wouldn't we take FULL advantage of that?

Yes, I am currently in the hospital and will probably be here for a couple of weeks. The hospital is another one of those things that I know I need to do in order to put myself in the best position to live a full, happy and healthy life. If I have to be in here 65 days a year in order to have a rocking 300 days the rest of the year, then I'll take that deal every time. Every year of my life I've had WAY more good days than bad, so why would I have any reason to complain?

I hope that answered your questions and I thank you so much for seeking my opinion. Please don't ever hesitate to email me other questions and thoughts. You may also enjoy some of my older posts on the blog, here are the links: http: //, http: //,

Do Life,
So what about you? Do you ever just get sick and tired of being "sick and tired"?
And what about your treatments, ever feel like giving them up and just dealing
with the consequences?

8 people had something to say...:

Lucy's mom said...

I really love this post Ronnie! Thank you! Being a CFer's mommy it is hard to grasp the concept of what it feels like to have CF, emotionally and physically. Lucy is still young and reasonably healthy but she still has to go through everyday life with me chasing her around the house to do her mask.
I will be using your quote about healthy teeth=brushing and healthy lungs=treatments. Thanks again for another free spirited post! I love them!
~Lucy's mom

Katelyn said...

I become very sick and tired of being sick and tired. I try to combat it by allowing myself to skip one treatment a week. It may not seem like a lot, but that one week night where I can go to bed guilt and worry free really helps me keep my head on straight. Plus, the way my lungs feel the next morning affirm the fact that I do, in fact, need to keep doing my treatments.

laulau555 said...

I agree! CF has made me a better person. It's opened my eyes to the important things in life, I think without it I would be selfish and have never learned what truly matters! Great post.

Anonymous said...

Thanks for reminding me of what an attitude I should have when dealing with CF. I too believe the same thing but lately have forgotten my way and have been in the dumps a bit. Thanks for jump starting me cause I feel so much better now and am on my way to feeling like I use to with CF. Like you said, we have to do what it takes even if that means 65 days in the joint to have 300 good days! Hope you are feeling better each day! Jennifer

casey jones said...

I love this post!!
I just typed a big comment earlier and the computer i was using wouldnt load the captcha so i lost it!!

but long story short, everything In this blog is true! I will never get tired or mad that i have CF, I know that i was put in this body for a reason and i will fight the rest of my life to make the best of it! I think the more positive you stay about it and the more you realize everytime you do your treatments and meds the more time you add to your lifespan, that means MORE FUN!
Like you said theres more good times than bad, we may spend 4 hours a day doing CF stuff but we get to enjoy the other 20hrs and appreciate them better than most!

I wouldnt trade my life with anyone elses in the world!

nicolemarie2010 said...

WOW!! thats a great answer i've always just kinda kept my CF on the back burner cause i didnt want to be different from all the "other kids" but now that im growing up its different i have to have right on the front all the time so that way i know will be heathly to face another day/week/year and i just found your blog and started reading and i really appreciate that you have it so i can really know other people are going through/went through what im dealing with THANKS!!

Denise said...

You have an amazing outlook, Ronnie. I'm positive you're helping others with CF because you're an inspiration to those of us who do not have it.

CoughingGirl said...

Hey Ronnie.
I totally agree with you on everything. I would never take back having CF. It's made me who I am today and I don't know who I'd be without it. Although doing treatments and being sick gets sometimes out of hand, I still deal with it. All of us do. I think almost everyone with CF feels the same way about it. We all get sick and tired of dealing with everything, but we learn to cope with it and just keep fighting. Would you mind if I made a post on my blog with the same name? Telling everyone I feel about it.
Your an amazing fighter and I love reading all your post's!