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Tonight, Karen (rooon55) in VoiceChat

Started by AnnOuncement, Feb 21 2008 01:52 AM

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#1 AnnOuncement

 

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Posted 21 February 2008 - 01:52 AM

Posted Image


Karen (Rooon55), February 21, 2008.

Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries.

A doctor didn't advise Vermont's Karen Nolan (Rooon on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did. After reading Nolan's post on an Internet message board, another patient suggested Nolan's lab results and symptoms could indicate pituitary disease and that help might be found more that 3,000 miles away at Oregon Health & Science University.

From Karen (rooon55), MedfordNews, May 15, 2006

Read Karen's bio at http://www.cushings-....com/karenn.htm


Listen Live at http://www.blogtalkr...om/CushingsHelp

Call-In to ask questions of add comments: (646) 200-0162

#2 rooon55

 

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Posted 21 February 2008 - 05:48 PM

Ugggggggggggg Robin. where did you get that Photo??? OMG

hey guys... I will be on the pod cast tonight, anyone that has time I would love it if you listen. If you can't catch it tonight maybe you can listen another time.

Hugs,
Karen

#3 fatnsassy

 

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Posted 21 February 2008 - 06:03 PM

Hey Karen! I'd love to listen, but I never do. It is a super busy time at my house, and then I forget about it later. I have weeks worth of these to catch up on.

I'm sure you will be great on the podcast! Thanks for the times we have talked. I appreciate your help and support!

Love ya!

Gracie

#4 MaryO

 

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Posted 21 February 2008 - 06:17 PM

 rooon55, on Feb 21 2008, 12:48 PM, said:

Ugggggggggggg Robin. where did you get that Photo??? OMG

hey guys... I will be on the pod cast tonight, anyone that has time I would love it if you listen. If you can't catch it tonight maybe you can listen another time.

Hugs,
Karen

Ummm - Robin doesn't do these, I do. I got the photo from the newspaper article, the only one I had of you.

Future interviewees - I need a good picture of you that will be posted around the site, on the boards, and a short bio so there's something to have as a short synopsis. I usually use the avatar but Karen's is her dog and I didn't think that was appropriate!

I know it appears that these interviews/podcasts are Robin's but I do the scheduling, switchboard, all the behind-the-scenes stuff.

#5 rooon55

 

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Posted 21 February 2008 - 09:08 PM

Mary sneaky LOL..... you really dug that one up heee heeee. To be honest, I never post my photo, because ... well, i'm not happy with the way I look. Its getting better as the weight comes off, maybe I will be brave in the coming months and post a real photo in my avatar

#6 stjfs

 

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Posted 21 February 2008 - 09:38 PM

Okay- what time is it on tonight? (central time zone here)...

Tammie :hug: go Karen!!!

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Posted 21 February 2008 - 09:38 PM

Mary, I swear I don't know how you find the time (and energy!) to do all that you do. You are truly dedicated and wonderful to do all that you do!

Karen, I know most of us are not happy with the way we look... but we need to put a face with cushing's disease, and that face needs to be the real us. The way we are because of this disease.

... besides, I've seen you and you are a beautiful sweet darling lady.

#8 Llama3234

 

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Posted 21 February 2008 - 09:46 PM

 stjfs, on Feb 21 2008, 03:38 PM, said:

Okay- what time is it on tonight? (central time zone here)...

Tammie :hug: go Karen!!!


5:30 p.m. CST (unless there is a time change that I'm not aware of).


I won't be able to hear the live version, but I can't wait to hear the archived ones.

Mary you do soo much to spread the word of Cushing's, it just amazes me. Hugs to you!


-Jessica

#9 MaryO

 

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Posted 21 February 2008 - 11:12 PM

7:30 eastern - all regular chats will be at this time. If there's a doctor or someone who needs a different day / time, we can make an exception for that week but the "official time" is 7:30PM eastern on Thursday nights.

#10 casperslove

 

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Posted 22 February 2008 - 12:42 AM

I'm finally able to take time to hear it, and I can't "hear" it. :) Can't figure out what's going on. I registered and have tried to fix all my volume controls and everything. I have no idea what's going on. It has yet to send me a registration email and everything. *sigh* Sorry Karen. I'll try as long as I can...

I can hear the previous interviews with Robin, but for some reason the one going on now is not letting me "in." Bummer... Guess I'll have to listen in afterwards.

#11 staticnrg

 

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Posted 22 February 2008 - 01:08 AM

Kay, it may be your firewall settings. I'll see if I can figure out what may be happening. Others may have some idea, too.

Karen, you did great!! I can't wait to hear the rest of the story.

Mary, thanks for all the hard work!!!

XOXOOX
Robin

#12 judycolby

 

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Posted 22 February 2008 - 01:16 AM

Good job, stay tuned for part II.
Judy

#13 MaryO

 

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Posted 22 February 2008 - 01:48 AM

It's on iTunes now :)

We're getting a pretty full schedule already - booked through March 20, one patient interested in an interview but not yet set up as well as 2 doctors.

I think we have a hit on our hands! LOL

WTG Karen and Robin!!!

Next week JenS will talk to us about BLA and related topics.

The upcoming chat schedule can always be found here: http://www.cushings-...st-speakers.htm

#14 casperslove

 

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Posted 22 February 2008 - 02:02 AM

I finally got to hear it - after the fact of course. It must be something with the plug-in and firewall settings I have for that application maybe?! I'll have to ask my hubby, he'd know. He has his MBA class tonight, or I would've done it sooner. :)

But Karen, it was nice to finally hear your voice and you did great! Hopefully I'll be able to hear part 2 live! ;) :D

#15 Flojo3

 

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Posted 22 February 2008 - 05:33 AM

Thank you Karen for sharing your story with us. I look forward to your next broadcast. You are an inspiration to those of us looking for answers and a diagnosis.

JoAnn

#16 teresab

 

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Posted 22 February 2008 - 05:58 AM

Karen, I am looking forward to your next installment on blogtalk. Thank you for sharing your story.
Teresa

#17 rooon55

 

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Posted 22 February 2008 - 01:39 PM

I just got up the nerve to listen to myself and .............heck it wasn't that bad heeheeeee.


Thank you Mary O for all you do. Without you this web site we would be lost little souls.

Hus,
Karen

#18 MaryO

 

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Posted 20 March 2008 - 11:43 AM

Karen joins us again tonight for part two of her interview.

I'm looking forward to hearing the rest of Karen's story!

#19 lesley

 

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Posted 20 March 2008 - 02:30 PM

Karen- i'm sorry going to miss an interesting chat tonite.

I love the blog chats but won't be able to be there tonite......

Jewish Holiday- Purim

not that I feel good enough for any celebrating.oh well...


lesley

#20 MaryO

 

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Posted 21 March 2008 - 12:49 AM

Tonight's second chat with Karen (rooon55) is now available on iTunes at http://www.itunes.co...st?id=271150820

Enjoy!
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