...I don't know if many of you listen to our BlogTalkRadio show, but it's full of information with some fun thrown in. MaryO and/or I host it, with a guest host here and there. Somehow, and I don't think either of us really knows for sure how, it became a Thursday night regular feature. Frankly, I'm not even sure how we ended up doing it. Are you, MaryO? (YooHoo....you out there???)The thing is, if you want to hear some real-life, non-staged stories about folks' journeys in their battle with Cushing's and other endocrine diseases, tune in. There are quite a few shows you may listen to just by clicking on the sidebar feature. I'm also going to list those that don't show in the sidebar below:
- Interview with Donna Sellers, mother of a Cushing's patient - Jun 19,2008
Donna Sellers, President, John's Foundation for Cushing's Awareness, mother of a Cushing's patient. - Interview with Dr. Dori Middleman, pituitary Cushing's survivor - Jun 12,2008
Dr. Dori Middleman is a Psychophamacologist, Certified Gestalt Psychotherapist and Cushing's Patient. She has had both pituitary surgery and two gamma knife radiosurgeries. - Interview with Heather S, pituitary Cushing's survivor - Jun 05,2008
Heather had pituitary surgery on January 18, 2006 after years of medical problems.
Steve Owens (sowens) returns to talk about support networks and agencies - May 29,2008 - Steve Owens' (sowens) topic will be building up support networks and using available agencies to get back to work (rehab, PT/OT, job coaches, etc). Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer.
- Interview with Leslie, pituitary Cushing's survivor - May 22,2008
Leslie had pituitary tumors removed twice at the University Of Michigan. After her second surgery she gave birth to her second baby. She has had another recurrence and has had Gamma Knife Radiation - Interview with Jackie (samsmom) & Jordan - May 15,2008
Jackie (samsmom) & Jordan: Cushing's in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on Discovery Health discussing her fight for a cure for her younger daughter, as well. Later, the gene responsible for Sam's illness was found. Her father carried the gene as did her two sisters. Jordan, Jackie's oldest daughter, has recently had her adrenals removed. - Interview with FerolV, pituitary survivor - May 08,2008
Ferol started noticing irregular symptoms in her late 20's, but more developed since 2001, and rapidly more chronic as time went by. Finally at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushings. She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnosis. Her pituitary surgery was performed 09-30-05. She has lost 30+ pounds after reaching a high of 190 prior to surgery . - Interview with Monica, pituitary survivor - May 02,2008
Listen as Monica (Monicaroni) talks about the challenges she's faced maintaining her music career while in testing and treatment. Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed. Since there was no post-op crash, she also had a BLA in December 2006. - Interview with Monica's Husband Kevin, about Caretakers - Apr 24,2008
Monica's husband, Kevin, talks about Cushing's from the spouse/caretaker point of view He is also Monica's producer/ manager. He has been a tour manager and sound engineer in the music industry his whole life and has worked with many of the greats in the industry. For the two years during Monica's diagnosis and surgeries he worked from home as a computer programmer so that he could take care of Monica. Monica and Kevin were married two years ago, just before Monica's pituitary surgery. - Interview with Terry G, pituitary patient - Apr 17,2008
Terry (Terry) is a long time pituitary Cushing's survivor. Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her cushings disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital. She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. - Interview with Steve Owens, adrenal patient - Apr 10,2008
Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer. Steve also has a newspaper article written about him. Steve's daughter may also have Cushing's. - SPECIAL Cushing's Awareness Day Voice Chat! - Apr 09,2008
Listen as Jayne Kerns and Robin Smith (staticnrg) hosted a Cushing's Awareness Day Special Chat This chat had callers and some testimonials for the website and Mary O'Connor (MaryO). - Interview with Jenn, Steroid Induced (Iatrogenic) Cushing's patient - Apr 03,2008
Jenn (StaceyJenn) was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies). Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing and she was transferred to his associate. She switched StaceyJenn to medrol. After Cushing's symptoms, a new endo started weaning her off the medrol... - Interview with Monica and Crystal, pituitary buddies - Mar 27,2008
Crystal and Monica went through every step of their Cushing's journey together--tested together, had surgeries the same days, and have become best friends because of it. - Interview with Karen Nolan, part 2 - Mar 20,2008
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. - Cushing's Diagnosis and Symptoms, part 2 - Mar 13,2008
Listen as Robin Smith (staticnrg) and Mary O'Connor (MaryO) co-host Cushing's message board members calling in to talk about their fight for diagnosis and treatment. The show will be opened with a brief explanation of what Cushing's is and what the symptoms are. - Mary OConnor (MaryO) second interview with Robin Smith (staticnrg) - Mar 07,2008
Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said "endocrine". - JenS discusses Bilateral Adrenalectomy (BLA) - Feb 29,2008
Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma. She was diagnosed by Dr. Ted Friedman as cyclical pituitary Cushings. Her second Surgery 7/21/04 for infection resulted in neuralgia. She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson's syndrome. Jen also has Thyroid Issues (Hashimoto's, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006) - Interview with Karen Nolan - Feb 22,2008
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. - Mary OConnor (MaryO) interviews Robin Smith (staticnrg) - Feb 15,2008
Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom Robin found in 2004 said "endocrine". - Interview with Alicia, a patient who is still testing. - Feb 08,2008
Alicia writes "Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a “students in crisis” plan and sent home for a little while. Being diagnosed as a “psych patient” would delay my diagnosis for years, most doctors just considered me "crazy." - Mary O'Connor (MaryO) interviews Jayne, Ectopic Cushing's Patient. - Jan 31,2008
Mary O'Connor (MaryO) hosts an interview with Jayne, a Cushing's patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's. - Interview with Judy, mom to 2 Cushing's Patients, and her daughter Jess - Jan 17,2008
Interview with Judy, the mother of two Cushing's patients, and her daughter, Jess, a high school student with Cushing's. Robin (staticnrg) hosts. - Symptoms and Diagnosis: Cushing's Message Board Members - Jan 10,2008
Robin Smith (staticnrg) hosted as Cushing's message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing's is and what the symptoms are. - Interview of MaryO by Robin Smith - January 3, 2008
MaryO, the founder of cushings-help.com support and information site and 20-year pituitary Cushing's Survivor is interviewed by Robin.
Yes, of course I'm out here!
ReplyDeleteI don't remember exactly how these came to be regularly on Thursdays but I think it was because of the long-time regular text chats on Wednesday nights and that I always had handbell rehearsals on Tuesdays.
I remember also that it was nearly a full year before these interviews started that we were talking about how to start a podcast of some kind but not quite sure of how to do that.
I must have been talking podcasting because the Christmas of 2006 my son got me a book on podcasting as a gift. I remember reading it and thinking it was way too complicated. LOL
You made that short podcast on "Diurnal variation in diagnosing Cushing's" in December last year then the first of the year we had our first test podcast where you interviewed me and then we were off...
I remember being terrified at first, and being so well prepared with the person's bio all printed out and advance questions to ask.
Now, when I'm hosting, I pretty much just wing it.
I do think that this is a great way to help spread the word. Last time I looked at the stats, we had over 6,765 on BlogTalk alone. That's nearly a thousand listeners a month. I have no idea how many people listen through the main site or on iTunes.
Personally, I have all these interviews on my iPod so I can listen/re-listen anytime or, if I go to a Cushing's meeting, I can play them for people who may not have a computer.
I think that they're always interesting and I know I learn something new every week. And, amazingly, there's been no dead time where no one could think of anything to say.
One thing I like about these interviews is that listeners can call in with their own questions or comments or, if they wish, they can sit in the chatroom and post what they'd like to say in there and it can be introduced into the conversation.
BTW, I love that broadcasting logo. Can I borrow that sometime? I don't like the one I've been using which is just the ribbon with Cushing's Help Podcast across the top of the ribbon.
Thanks for all your help with these podcasts, Robin. I don't think that they would have gone as far as they have without you hosting/co-hosting and your support. Surprisingly, there is more behind the scenes work that goes on promoting upcoming chats and getting finished ones on iTunes but I think it's all so worthwhile.
So...thanks for all your input, help, knowledge, willingness to talk and just being there. You're a great "Cushie Crusader"!
Hi, Mary! LOL...I knew you were out there somewhere. Ok, I remember some of the history, but didn't rememember it all. I so appreciate you and glad to do anything I can to help.
ReplyDeleteYOu may use that ribbon any way you like. Want one with Cushing's Help and Support on it? I can do that for you easily.
Hugs...