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.