Cushie Chats: Podcasts and Interviews with information and support for Cushing's patients

Laura has been struggling since 2007 with various odd things happening to her body. In March of 2009 she was diagnosed with Hashimoto's Disease and Hypothyroid. Her bio contains a long list of symptoms she has and she has been misdiagnosed with Obesity, Diabetes, Kidney stones, Depression, MS, Manic/Depressive, TIA, Anxiety - stress, Not exercising enough, Not eating properly, Abusive relationship (due to bruising). In responding to the email confirming this interview Laura wrote: "When I started reading the bio's of people like myself, I started to cry tears of relief that what I may have, is actually ONE real thing. I cannot tell you how happy I was to find your website and I think it is wonderful that so many people who truly understand how frustrating it is to think we are alone, are willing to put themselves out there as beacons of hope for the rest of us. I felt so strongly, that I wanted to add my bio and offer myself for interview. If I can help one person feel a little calmer while they go through this process, I am more than willing. I don't know if I have Cushing's but if I do, it is important to me to reach out to others because the attacks coming from the physical and mental side of this illness, deserve to be exposed and recognized. Even though I am feeling a bit humiliated, reclusive and embarassed because of what it is doing to me." Read Laura's entire bio at http://www.cushie.info/index.php?option=com_content&view=article&id=413:laura-undiagnosed-bio&catid=32:bios&Itemid=68

Jon's first pituitary surgery was with an inexperienced surgeon. He took Ketoconozole until his second surgery at UC San Francisco June 2nd, 2009.

Elizabeth has been sick for about 5 years. She was diagnosed with the start of cervical cancer so she had a LEEP done. Her cortisol level was still high so she went to Johns Hopkins and an endo there diagnosed her with Cushing's in May of 2009. Her pituitary tumor was removed in June 2009.

Live interview June 18, 2009, 7:30PM EST Lynn had a left adrenalectomy in 2000. In 2004 Lynn had a Thyroidectomy due to tumor which was malignant on the biopsy, yet benign at surgery. In May 2009 she learned she had a 3mm anterior pituitary tumor. She is a patient of Dr Ted Friedman.

Gina was diagnosed with cyclic Cushing's Disease in August 2008 and has a 3-4 mm abnormality on her pituitary gland and a possible adrenal problem. Read her entire bio at http://www.cushings-help.com/ginac.htm Unfortunately, all 3 of us - host Mary, co-host Robin and Gina had issues and were booted off the system several times so that this interview never really ended but abruptly stopped. Gina has graciously agreed to return to finish up this interview after her upcoming surgery. Thanks for your patience, everyone, and thanks to Gina for putting up with us disappearing and reappearing!

Gail was originally diagnosed with Cushing's in 1988. At that time she had a pituitary tumor removed. She was okay for about 10 years and the Cushing's occurred again. Her tumor was removed, as well as her pituitary glands. In 2003, it reoccurred and she had her adrenal glands removed. She is now experiencing all symptoms again and her Endo is puzzled since Gail has no glands, and has undergone radiation. The endo thinks maybe she now has Nelsons Syndrome. It has been a long battle because of the Cushing's, over 21 years, and it has effected her life dramatically.

Ami had pituitary surgery on January 27, 2009 at UCI University Hospital. Her doctor has been trying to figure out what is wrong with her for 12 years, but she really only joined her crusade 3 years ago, being unwilling to be sick.

Gina was diagnosed with cyclic Cushing's Disease in August 2008 and has a 3-4 mm abnormality on her pituitary gland and a possible adrenal problem. Read her entire bio at http://www.cushings-help.com/ginac.htm

Melissa had pituitary surgery in October, 2008. She had recently had a baby so all her symptoms had been supposed to relate to her pregnancy. Melissa's brain MRI came back normal. She had a lot of other testing and the neurosurgeon finally saw an area that looked worthy of removal. Her surgery was successful and she has weaned off her cortisol.

Arubiana has attended Dr. William Ludlam's "Camp Cushie" to do definitive Cushing's testing. They found a microadenoma on the left side of her pituitary gland. She will be going to be having surgery with Dr Mayberg in March/April of 2009. In addition to seeing various doctors, Arubiana has seen an accupressurist for help with sleep and general health. How can I convert to my Time Zone? Go to: http://www.globalmetric.com/time

This first "test" announcement is about the upcoming interview with Dr Ted Friedman. Note that the date of this interview has changed to January 29, 2009 at 8:30PM eastern. Future audio announcements will include other news items and happenings in the Cushing's Community.

Barbara (2maro) had surgery at MD Anderson with Dr. McCutcheon who removed her pituitary tumor transphenoidally. Miraculously, over the next 9 months, she lost 100 pounds. She is no longer diabetic and did not have high blood pressure until 2008.

Our guest didn't call in so Robin and MaryO discussed a bit of everything from doctors to blogs, to the non-profit, to pending tests to any and everything.

MaryO interviewed Cyndie (aautomo884). Cyndie started having symptoms 2004. She had 2 Parathyroid Adenomas removed June 2007. She is now ruling out MEN 1.

MaryO and Robin interview Kay. Kay is mom to 6 year old twins and was "officially" diagnosed with Cushing's in February 2008. She had surgery to remove the pituitary tumor causing the Cushings in June of 2008. She is in the process of weaning off steroids orally. She documents her post-op experiences in her blog. She did some of her testing at Dr. Ludlam's "Camp Cushie". Keywords: acne, ACTH, anxiety, blood tests, cortisol, CT scan, dexamethosone test, diabetes, Dr. Mayberg, endocrinologist, estrogen, fatigue, growth hormone, hyperplasia, IPSS, miscarriage, MRI, neurosurgeon, PCOS, pituitary, prolactinoma, salivary, surgery, thyroid, UFC, urine, wean, weight

Join us as Mary O'Connor (MaryO) interviews Gracie again. Gracie (fatnsassy) has been dealing with Cushing's symptoms for about 14 years. She began testing in California with Dr. Ted Friedman June, 2007 and she was diagnosed in May, 2008 with cyclical Cushing's disease. She saw Dr. Hae-Dong Jho and arranged for her pituitary surgery in Philadelphia, Pa, in August, 2008. This is her first post-op interview.

Join us as Mary O'Connor (MaryO) and Robin Smith (staticnrg) interview Stacey. Stacey will be one year post-op at the time of the interview. She will have been to her 1 year appointment and will give a full update of her recovery.

Join us as Mary O'Connor (MaryO) and Robin Smith (staticnrg) interview long time Cushing's patient Susan (SusanM). Susan writes: Susan writes: As you may have read in my other post, I retired from a 28-year career at a major health insurance company (one of the big five) on March 31. 2008. I am happy with this achievement, however, much more proud of the actions I took to reach that achievement. Why so? For 27 of those 28 years, I had faced Cushings and we all know what difficulty that may bring. In 2003, I had the pit surgery and became quite ill in 2004. It wasn't until November, of 2005 that I had the BLA which brought about some relief. During all of this, I worked full time consistently until 2004 when I had to take some time off of work. I was GH deficient and had the episode of congestive heart failure. Once back at work, I applied for a work accommodation to work at home on Monday and Friday under the Americans with Disabilities Act. It was granted and I was provided with a full computer set up at home as well as the one at work. This made a great difference in my being able to work or not. Not driving the 26 miles each way to work as well as being at home continued my work. Another thing I did was to work with my PCP to be accepted into the Physical Rehab at the local hospital. It provided medically-monitored exercise (up to 5 days a week) and my muscles recovered well during this time. I had difficulty with shortness of breath due to the weak muscles around my lungs and this was a positive step to correct that situation. What else did I do to keep myself working during this timeframe? I worked incredibly hard on achieving a positive mental attitude! I meditated, performed self-hypnosis, and found a support system that worked for me. This foundation made the better days better and difficult days a bit less difficult. Can someone with Cushings continue working? In my opinion, YES.

Dr Rob writes in his very popular blog: "I am a practicing primary care physician in the Southeastern US, caring for patients of all ages (Board Certified in both Internal Medicine and Pediatrics). This blog covers a wide variety of issues, including the following: What it is like to be a physician, dogs driving cars, what troubles are in our system, toddlers with flame-throwers, what would it take to fix that system, llamas, death and dying issues, mutants, and accordions. Maybe I need to write about mutant dying accordions with flame-throwers. Hmmm....I feel a post coming. Anyhow, I like variety. Life is always lived with both laughter and tears. If you are a regular reader of this blog, it is also filled with nausea and nightmares. Thanks for stopping by. -Dr. Rob"

Robin and MaryO discussed the role of blogs in helping to spread the word about Cushing's. They also discussed popular doctor blogs and other topics of interest to Cushing's Patients.