Monday, July 27, 2009

Readers, I Need Your Help!!! Please Watch Video!

I need your help guys. As my hospital stay comes to an end, I need to know where to go from here. This blog started as a way to hold me accountable while I whip myself back into shape and get my lungs moving again. It has turned into a blog more themed around Cystic Fibrosis and my personal feelings about the disease (which is what was requested of me by the readers about a month ago or so). I need your help again and I'm asking for your input on how to make this blog better. I would also like to make this blog more consistent according to what day it is...something like Mandi Monday and Workout Wednesday or something (just a thought). So let me have it guys, I want this blog to be yours!

10 people had something to say...:

Shawntina said...

Just watched blog so glad to hear ur gettin out---supplements have you tried Juice Plus ---also I know with my situation you encourage everyone but with my 11yr old daughter she is having thoughts of i wish i would die so i wouldn't be sick--if you could say somethings from back in the day how u coped with how you felt i think it might help her pull through this slump--again congrats on bein better take care

Karla said...

Hey there,,,
Things I think help is #1 knowing how you are feeling everyday...I know your not going to feel great all the time,,but ,,your usually pretty good at saying you don't feel good today or your feeling a little better.And knowing what your PFT'S are,,and how do you feel your medicines are helping you...What do your x-rays or CT scan and lab work say and what kind of pathogens are you fighting,,,and at what age you started getting pathogens?? Do you ever get scared?
How did you get so many muscles? My little one will push herself to the point that one min, she will be full of energy then the next min. she's so tired she can't hardly talk,and wants to go to bed ...
Does your cough change alot,,,like productive , dry, honking sound, or times mucous doesn't come up??
Hope I'm not asking to much...

PS I will certainly try to watch my spelling,,, I can't believe in one of the other blogs I wrote "high",,,, instead of "hi",,daaaa,,,just being tired !!!

/Would love to know if they are going to do your PFT'S,and a chest xray before you go,,and what pthogenes are you fighting???

Many prayers on thir way,,Karla

proudmoma said...

So good to hear you are getting outta there:)

Reece is learning to huff cough...it would be nice to show him how its done. Acapella usage..like the correct way;)

Maybe a clinic visit rundown..what you like/dislike about it...what you would like to see. Hope this helps, these are things Im interested in....if I think of more I will share:) Great idea!!

LauLau said...

ok going with your "workout wednesday" "mandi monday" themes... i've come up with some alliterations (my forte) Tasty tuesday (eating/nutrition etc), flashback friday (past care, diagnosis, your past life compared to now, etc.), silly saturday or sunday (something random to make you laugh? i have a thing for laughing!) I'm drawing a blank for thursdays and I like your idea for workout wednesday and mandi monday (mandi is just the cutest! maybe you could talk about CF relationships?) That's all my creativity today, hope it helps somewhat!

p.s. glad you're getting out of the slammer!

casey jones said...

Good thing your getting out! I really like ^^^her^^^^ ideas, but as far as a daily thing, one thing I was thinking is, random question of the day, like a question that has no meaning at all and is just kinda funny, like, "If you stay up for 24hrs, do you skip morning breath?"

hmmm...what do I want out of runsickboyrun.com??

Before you were in the hospital, something that drew in my attention was that you RAN! your running MILES! and you have CF??

It was motivation for me to start exercising again, and thats just something you should keep on doing, track your mileage and time>

runsickboyrun.com Is GREAT! and if you didnt change a thing it would still be GREAT!

I'm gonna start a 90 day blog of me working out to P90x, and post my weight before and after pics, and how I felt after the workout.
Maybe you could do something like that, record your progress daily, LIFE AFTER THE HOSPITAL...

???

lindsay michele said...

Any chance you have nike+ipod? I used to use mine to track my runs, but got complacent and thought it might be a good way to get back in the habit and have some accountability. Plus you could start a "CF" group on nikeplus.com and we could all "compete" against each other with blog updates every so often of how everyone is doing. Just a thought!

nicolemarie2010 said...

YAY your getting out... no one likes being stuck. i would like to hear about howCF effects you relationship with people like mandi and friends and family.maybe even get a post from mandi and have her talk about how she "deals" with your CF and thanks again for you doing this blog i think its helping me alot!!

Ronnie "Sickboy" Sharpe said...

Nicole- If you go to the "themes" section on the left hand side of this blog page and click on "Relationships", you can see some of my thoughts on relationships and CF. You can also search relationships in the search bar near the top of this blog!

Thanks for your suggestions!

Ronnie

Chris (punx87114 on twitter) said...

I dont think you need to change anything about the blog. I like the passion that you have to find the cure, and that you are available to anyone that has a question. so keep it the same!! and congrats on getting out of the hole.

~ Leah said...

Hey Ronnie,

How about watching your progression in your workouts, like watching your workouts. I don't know if there's any way to make a decent video when you're running/walking, but maybe there's some way to do it!