Tuesday, June 16, 2009

Hope, Long-term Goals and CF

**The following is my comment on Megan's blog which I encourage you to read so that this post will make a little more sense. I would also encourage you to leave her some kind words and some advice if you have ever found yourself in the same situation. She need some support right now from people who have been in her shoes. Thank you.**


I understand the feeling of being overwhelmed by CF sometimes, but I've got to disagree with you on some of your worries. Now, first let me state that I don't know you, nor your CF, but I do know that some of the things you said aren't necessarily true.


There is no reason that you can't live to a super old age. They are making incredible progress with medicine and research and I am confident that in the next 5-10 years there will be a breakthrough. I understand that you have to be around to receive that new drug or cure, but judging from your lung function and the fact that you're able to exercise, I think that you can plan on being around. Be faithful with your treatments and exercise and you will put yourself in the best position possible.


I personally know more adult CFers that are married than adult CFers that are single. I think too many of us are caught up in this CF in the 1980's or 90's mentality. Sure, some freak things can happen, but if you are faithful in taking care of your disease, your chances of leading a "normal" life go way up. I can only speak from MY experience, but most CFers that I have known that died at an early age were often living risky lifestyles or would totally blow off their treatments. That's not to say that somebody who is not 100% faithful can't die, but we all know that it certainly doesn't hurt to take care of yourself.


I know that it can be scary, I'm not downplaying that, but maybe you can try and fail first before you give up on your hopes and dreams. Trying and failing is 100 times better than not trying at all.


I am always here if you want to bounce some stuff off of me or just need someone to listen. I really hope that you take to heart some of the stuff I have said because I see you as girl with a long, happy and productive life.


Ronnie

2 people had something to say...:

Natalia Ritchie said...

Ronnie well said.
I guess we all have to remember that CF is a spectrum disease. Some people have shorter lives than others. Lisa Bentley has CF, and she's an Iron Woman, and has been named one of the best athletes in the world. (she goes to my clinic and is incredible) But even she said to me once that she doesn't like the public knowing that she has CF, since it makes people think it must be an easy illness, since she's WAY on the other side of that spectrum.

I want to give courage, hope, and encouragement to people that have lost hope, I agree! But I also don't want to say that those that have passed away did not do their part. That's unfair. There are people with feeding tubes and PICC lines from infanthood. That spectrum is long and wide.

Saying that hope is what we all need. Getting married, having babies, it's possible! And working hard to get there, taking care of yourself, working out, doing treatments, it's all great stuff! And when it's time trasnplant is also a great option. There is so much hope, we should all spread that hope!!

RunSickboyRun.com said...

I completely agree with you. I didn't want to sound as if I think that people who are sick are responsible for their own suffering. I've had friends with CF that took good care of themselves that still were sick and somewhat helpless. I understand that we don't have total control over this disease. I was just relating that in MY experience and with CFers I have met, that a common theme with those who are sick is being non-compliant with their treatments or living risky lifestyles.

Ronnie