Group Awareness Effort- Oprah

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From: byrd45 (Original Message) Sent: 10/17/2007 8:04 PM
Hi Everyone,
I am tired of seeing this board dead so it is time to revive it. I am going to place all our awareness efforts as a group on the fundraiser board and am also renaming it to match it's new purpose.As we talked about on the general board we have started to email Oprah as an effort to have her do a show on RSD. Okay everyone lets get those emails out to her if you want to help raise awareness this is what you have to do.... Just click on the following link below
https://www.oprah.com/plugger/templates/BeOnTheShow.jhtml?action=respond&plugId=B2100004 and tell Oprah why you think she should do a story about RSD. Tell her you are from RSD Outreach and they only give you a very limited space so really plan what you want to say first. Talking about procedures and things we have gone through probably isn't the best way to get through to them. If your not sure what to say tell them about your life as a survivor of RSD and maybe even something positive you are doing if you want to.I'm not saying you shouldn't mention the pain but the thing is we are surviving that pain everyday and at this point there is no cure and that is our reality. That is why awareness is so important to help find a cure in the future exposure =research and research =a cure some day.I hope this gives you some ideas how to approach the writing end of it if you aren't sure. If you want to check out the rest of Oprah's site the link is.....www.oprah.com
Thank you in advance to all of you who take the time to write Oprah and hopefully someone there will hear us reaching out to them.
Love,
Robyn



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From: byrd45 Sent: 10/18/2007 2:16 PM
Hi Everyone,
I would like to make an end date for getting your emails to Oprah November 30th. I figure that should give everyone ample time to write if they are interested in doing so. If everyone feels this is enough time then and we don't hear anything by then we will try another show. Does that sound fair to everyone or do you need more time? Please comment on this post so I know how you all feel about this. Majority rules I will give you all until November 15th to respond okay and then we can see where we are going to go from there. Let's here from you all that are interested....Thanks!
Love,
Robyn



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From: Rittlemom1 Sent: 10/18/2007 5:35 PM
Hi Robyn, I added my my email to the oprah site. I mentioned Dr. Lubenow in the note as well, thinking it might give them a reference to check with when thinking about our request for an awarness show. Figure try anything that might help right? the site has been very quite I notice, but if everyone is like me I have really felt bad the last couple of weeks. I think maybe the wheather changes are getting to us all. I am really having a tuff time with my stomach pain, burning nausea etc. could this be from the rsd you think ? yuck its really got me down along with my other pain levels up. I also went through a spell of extreme fatique!! that kinda comes and goes in spells. I see the pain doc nov. 8 see what he says then. Glad your kitty got some meds, hope she feels better soon. take care, Kathy


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From: byrd45 Sent: 10/18/2007 6:17 PM
Hi Kathy,
Thanks so much for taking part in this! That was a great idea to mention the doctor's name now I don't have to write a second email so thank you so much for thinking of doing that! I wouldn't be surprised if the stomach pain had something to do with it I would definitely mention it. I have been going through that for a long time now and it finally turned out to be a part of mine. The pain levels get high enough and that can affect your stomach too. I know that the fatigue is a part of RSD I have that as well and it does come and go like you said. It can really be rough so hang in there my friend big hugs.Yeah it has been a little quiet I figured it is the change in weather or hopefully people taking advantage of the last of the nicer weather that is left. I hope the last part.
Love,
Robyn
----- Original Message -----
From: Rittlemom1
To: RSD Outreach
Sent: Thursday, October 18, 2007 5:35 PM
Subject: Re: Group Awareness Effort- The Oprah Show


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New Message on RSD Outreach

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From: Rittlemom1
Message 3 in Discussion

Hi Robyn, I added my my email to the oprah site. I mentioned Dr. Lubenow in the note as well, thinking it might give them a reference to check with when thinking about our request for an awarness show. Figure try anything that might help right? the site has been very quite I notice, but if everyone is like me I have really felt bad the last couple of weeks. I think maybe the wheather changes are getting to us all. I am really having a tuff time with my stomach pain, burning nausea etc. could this be from the rsd you think ? yuck its really got me down along with my other pain levels up. I also went through a spell of extreme fatique!! that kinda comes and goes in spells. I see the pain doc nov. 8 see what he says then. Glad your kitty got some meds, hope she feels better soon. take care, Kathy

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From: Liz3079 Sent: 1/23/2008 2:54 PM
Hi Robyn

i know this is an old post but i just recently emailed dr. oz about rsd and how im being treated. he is a dr on oprah.

love and hugs liz