Friday, March 27, 2009

A Message from Member at cysticfibrosis.com--Please Read

The following message is from a concerned member at www.cysticfibrosis.com. I withheld his/her name to protect their privacy.

Member's letter:

Hello Ron, I know you don't know me, but I feel compelled to ask you a few questions. First, I would like to welcome you to the site. You really didnt give anyone the opportunity to do that, as you have never introduced yourself to the community. All of a sudden you turned up and started blogging about your daily activities. I think you may be wondering why no one is commenting on your blogs. That is one reason--you never introduced yourself.

Also, we are a little leary of strangers, as we had a terrible incident in which an imposter nearly wrecked our community. I am not suggesting that you are an imposter, but just letting you know that people are a little shell-shocked because of that. We welcome strangers, but we would like you to introduce yourself, tell us a little about you.

Second, I would like to personally ask if you would limit your posting blogs somewhat...You put out at least two or three a day, and it pushes everyone else's blogs out of the line. (I really wish Jeanne would have a rule that we only post one blog a day, unless emergency) Lots of people don't go to the blog page, so when a blog is pushed off, it may not have been seen...And you have another blog, so why do you double post? I went there and it's the same thing. I think you would get more responses if you wrote something different here. There are lots of people here with two blog sites...I even even contemplating starting one of my own...I don't mean to offend you by this pm, but I hope you can understand that this is an established community, it has been here a long time, and you come here acting like we should know you. You post your running routine, like we should be interested, when we don't know you. When asked what your cf routine is, you don't answer. I hope that you don't think that I am being inconsiderate by mentioning these things to you. I have had several people asking about you and who you are, I just thought you may want to know. Again, I would like to welcome you, and I hope I haven't offended you.

Sincerely, Name Withheld

My response:

Name Withheld,
Thank you for your message. First, I post stuff on this blog so it is more accessible to CFers in this community. I don't want to come in here and just advertise my new blog. It is getting quite a few views per day, so I'm guessing that there are some people that care about my "running routine". As you know, that's not all I post, as I have had posts on how CF directly affects my life. I feel compelled to share my story and I have the time to write it down. I enjoy blogging and I know others can write more if they are compelled to do so.

I have gotten a lot of positive feedback from readers and some seem to be taking on my work out challenge in their own lives. Therefore, while I understand and appreciate your feedback, readers, and fellow CFers I have spoken to would like to hear what I'm doing, so I am going to continue to write as I am now.

I came here and started writing to hopefully inspire other CFers to get out there and get active and take their treatments more seriously. I'm not sure what exactly it is you would like to know about me, but I would love to share anything and everything with you and the community. I see that you do not have CF yourself, so with all due respect, it might just be a matter of you not fully understanding the struggle and my desire to share my fight with, and inspire, others.

I speak regularly for the CFF and I am an open book when it comes to my disease. I didn't introduce myself to this site because it's not about Ronnie Sharpe, it's about CF. Those who would like to get to know me better can feel free to ask me questions as I would love to answer them. Many have PMed me questions and I have always answered promptly with a response. So why don't we start with just us? What would you like to know Name Withheld?

I'm sorry if it seems that I just came barging in here. I didn't think there was an initiation period when it came to this site. I don't only post my blog, I also answer questions on the forums everyday. I'm here to try and help. I live a "very typical" CF life but I think my response is different than most. I feel blessed to have CF. If I was born again, I would not choose a different life. This offends some people and I'm sorry about that, but that's how I feel.

It's not that I haven't struggled. I've had to put my life on hold at times. I'm in the hospital 90 days a year. I've coughed up so much blood I almost went into shock. I've been clinically dead. I've been blue from head to toe because of a lack of oxygen. But, all of those situations only makes me a stronger guy who appreciates every single breath that I take.
So, just tell me what to do Name Withheld. What do I need to do to make you and the community more comfortable? I'm only here to be a blessing, not a burden.

Sincerely,
Ronnie

Apparently some have been taken aback by the passion to broadcast my struggles. Please let me know your thoughts, I would love to know if this is a majority feeling or one woman speaking on behalf of a non-existent group. Thank you.

10 people had something to say...:

Graciy said...

I don't have Cf myself but my husband does. He is my world and everything i do is to make his life more injoyable and to keep him healthy. I just started following your blog but i find it VERY helpful.

As I said before I do not have CF so I can't understand how he feels. Reading blogs like yours helps me to be more comfortable with any and all things CF so I can be more understanding. Please don't stop blogging.

I see were the other person is coming from and I respect that. If writing 10 blogs a day makes life easier then please do so.

Amanda said...

Hi Ronnie. I haven't even finished reading yoru blog post but I find that letter to you totally offensive. I like your blog and have been reading it daily. It's nice to find another CF-er who seems exercise oriented and is documenting their journey (there is tons you can learn about yourself and your treatment from it!). I never visit cysticfibrosis.com but I think if it's supposed to be an open forum for CFers to share their daily struggle, why should someone be offended/skeptical of another CFer doing just that? Sounds like they're trying to be some exclusive community with a sort of initiation process...lame! On another note, there aren't many blogs written by men with CF, so it's nice to hear the male perspective of the disease.

Bottom line: keep writing, I'll keep reading (because I think you and your dog are interesting), and keep running! :)

Amanda

RunSickboyRun.com said...

I really appreciate both of your comments. If I can help just one person I am happy and feel very good about what I'm doing. Sure, I also blog to hold myself accountable, but to know that people are actually reading my blog and enjoying it, makes me that much more motivated.

I promise to keep writing and sharing my experiences with you daily. Thank you so much for your support. Questions and comments are highly encouraged.

Ronnie

CFlover said...

Kuddos to you!! I had the very same thing happen to me. I for the life of me cant imagine why ANYONE would ever make up or strech the truth any when it comes to CF. Often I find that my blogger people help me and get me through things that I was very hard on me before!!!

Im so sorry I didnt know about your blog to follow =/ If you have read my blog then you know Im a bit of a blog bimbo and Im just figuring stuff on here out.

Thanks for finding my blog and reading =)

M is a total gammer and plays mostly RPG's and has every system..hes not much of a xboxer but he has played the ninja giden's but thats about it on xbox.
Right now hes addicted to resident evil 5 & Street fighter 4.

Again thanks for finding me =D

Cindy said...

I stepped away from cysticfibrosis.com for the main reason that people were just not nice. Picking fights, getting in tiffs just because, and it just was not the place I wanted to learn more about the disease that affects my daughter.

Keep on, keeping on. Thanks for checking out my blog, too! :o)

jen said...

I recently came accross your blog and have been reading along. I thought I would leave my first comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


Kaylee

http://grillsblog.com

RunSickboyRun.com said...

Cindy- It doesn't make much sense to me either. I will continue to post there because I am getting 50-100 readers a day on that site, but I totally see what you are saying. The overall feeling at cysticfibrosis.com seems to be very negative. I wish it wasn't that way, but sometimes certain groups take over and can change the overall mood.

Ronnie

RunSickboyRun.com said...

CFLover-

I'm hoping that you'll be able to get some positive stuff out of my blog too and I thank you for stopping by and checking it out.

I'm not a huge gamer, but when I did play, it was all about the sports games.

Ronnie

RunSickboyRun.com said...

Here's a great comment from a fellow CFer posted on another site:

hey there, i don't know you but i read your blogs here and over at your other blog site and just wanted to comment about the letter you posted from "name withheld". i, for one, love your blog entries. i find myself laughing out loud (and getting some awkward stares from those around me hahaha) at your writing style. very funny indeed. you should disregard any kind of negativity you get from certain other members. yeah you showed up, didn't introduce yourself, and started blogging....but it's a public forum with no such stated rules....so please disregard the person that sent you that letter--i have an idea of who it might have been--and if they are REALLY that concerned about blogs being pushed down on the sidebar they can click on the blog tab at the top of the page and see the complete list there. kind of rediculous for them to send that whole letter.

my point in saying all this is that i think you're attitude is great and your ambitious workout schedule is inspiring so keep your blogs coming!

-jaime (jaimers) 24 w/cf

Thanks again Jaime!

Natalia Ritchie said...

I don't want to sound rude, but what a moron!!! Ronnie, if you want to post 500 times a day, then you do that!! If they want to, they can do that too.
Fellow CFers know what it's like to start a work out routine...it's HARD. And the fact that you are doing so is beyond awesome!! My mission has always been to inspire CFers to be more active...

Nat
29 w CF (almost 30)