Thursday, July 23, 2009

The Daily Battles of Cystic Fibrosis

Hey guys, thanks for your continued support! I wanted to encourage you to try and watch the videos all the way through. I know I can become long winded and I'll try to make them shorter, but it's tough to squeeze in everything I want to say. I'll work on it though! But again, thanks for watching the videos at all, I just don't want you guys to miss anything! Take a look around the blog and check out all of the new features. I'm trying to make it easier for you guys to spread the word about CF and get it in front of people. I have also added some features along the left hand side of the blog including popular posts, recent comments, and my PFT history. I hope you guys enjoy all of the new stuff and as always, thank you for your interaction, thoughts and prayers.

Pontificated by Unknown
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7 people had something to say...:

Anonymous said...

Once again your right! It is a battle everyday and i know that i have kept up with my meds, ate everything in sight and still ended up in the hospital, as well as gotten the best pft result without doing a thing!

p.s. I watch all your videos through and through! lol

July 23, 2009 at 1:25 AM
CG Beth said...

I watched the WHOLE video and thanks so much. If it's okay, I'll repost on my site and reference your site as my post tonight...? Might be going in to the joint myself tonight (hospital) if my resting O2 doesn't get more decent :( It is really really low! Gr....

Thanks much for the video!!

July 23, 2009 at 3:42 AM
Denise said...

NOOOO. I wasn't saying you were long winded!!! Not at all!!! I'm just scared of what will be on the video. I don't want to see anything upsetting!!! I'm sorry, didn't mean to make you think you had to cut them short. This is your blog, talk away!!

July 23, 2009 at 4:38 AM
Beth said...

Thank you! This was the exact encouragement I needed today.

July 23, 2009 at 5:06 AM
Kellee said...

Thanks again for an awesome video!!
It took me awhile to understand even if M or myself or the both of us do everything by the books its not always gonna mean he is healthy. I would get so upset and say "but we did all the treatments or but I keep the house really clean" And finally one day Dr. S looked up and me and started laughing...(I really was not seeing ANYTHING funny) And he goes "Kellee I am so sorry I have not popped your bubble sooner." And Im sure you know but the CF doctor is much more like a friend rather than a doctor so he grabs my hand and goes on with this bubble popping "Even if you pour bleach in Michaels lungs he is still going to have infection" of course he followed with "it wouldnt last long because you would kill him" but point taken so I really just now 7 years into this learning about the stuff you cant control.

Anyway sorry for the novel!!
Feel good!

July 23, 2009 at 10:39 AM
Unknown said...

You are a great motivational speaker. Thanks for you continued encouragement. I have only been following your blog for a short time now, but I look forward to it each day.

July 23, 2009 at 5:20 PM
Karla said...

Dear Ronnie,,
I have learned more watching your video's,,, than I have at any CF appt....To me you can talk as long as you want....Thankyou for posting your PFT'S ...

Here's one or two examples of what I've learned watching you,,,,just knowing that today you said you don't feel good after 8 days in the hospital...My little one always looks like she's at death's door in the hospital,,literally, eyes will be blue/black,, throwing up buckets of blood,,very restless,, the raspy voice,, heart pounding so fast,, sats drop,,etc, you know what I mean...She just turned 8, but looks like she's 5 (she's so tiny),,but don't dare tell her she looks so tiny(she hates when people say that to her).


I used to think,my God, do they know what thier doing??? Why isn't she getting better??? She looked better before she came in...

I guess I'm trying to say,, It helps to see what another CFer is going through when they are in the hospital...

I'm very sorry your not feeling well today ,,,,and you do give me alot of hope and encouragement..

I pray you start to feel better quickly.God Bless You,,Karla

July 23, 2009 at 8:29 PM

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