Month: July 2017

🔵 New on the Message Boards ~ July 29, 2017

MaryO Uncategorized , , , , , ,

 

A quick summary of some of this week’s activity on the Cushing’s Help message boards.

 

The Guest Questions have returned on a trial basis.  At the moment, new guest questions are not moderated.  Guests may ask for information and (hopefully!) board members will answer.

There is one question so far on How to search the boards?

A New Introduction at Jasmine, Possible Cushie, Stressed Beyond Belief!

More on an insurance issue in Dr F Update

Just for fun, I’ve added other images to Announcements, Questions About How These Boards Work? and Introduce Yourself to help newcomers find their way.

Information about A Phase III Study of Osilodrostat to Treat Cushing’s Disease

A long-time board member reports that she is Cured! No Surgery 🙂

The ups and downs of Blood Pressure

There’s other stuff happening but you’ll just have to read the boards to find out what!

(Please note that I’m sharing these from the Cushings-Help.com message boards. You must be a logged-in member of that board to read them. Log in or register at http://cushings.invisionzone.com )

Please join us!

 

🔵 New on the Message Boards ~ July 22, 2017

MaryO Uncategorized , , , , , , , , , , , , , , , , ,

 

A quick summary of some of this week’s activity on the Cushing’s Help message boards.

A new member posted Another Hump Pic

More discussion about post-op cortisol and weaning in Nicole, Undiagnosed Bio

Save the Date info for a Conference on Adrenal Insufficiency

Form over fashion may save your life! Yes, You Need a Medical Alert Bracelet!

Our newest Newbie has been cleared for surgery in August!

A new member wonders about A Small Hump Maybe?

The Boards Have Been Upgraded Again.  There are 3 skin choices at the bottom, including the default, if you want to try another look.

You can post directly to Facebook and/or Twitter, if you choose.  People who are not logged into the boards will not be able to see what you post on them.

This new upgrade brought us some icons in the bottom right of each post where you can “rate” the information – but only in a positive way.   They slide out from the little heart-looking image and are fairly self-explanatory.

Screenshot 2017-07-20 00.05.11.png

 

I just added a new icon to the list.  Although it’s small, it’s to welcome new members.

 

There’s other stuff happening but you’ll just have to read the boards to find out what!

(Please note that I’m sharing these from the Cushings-Help.com message boards. You must be a logged-in member of that board to read them. Log in or register at http://cushings.invisionzone.com )

Please join us!

 

🎂 Cushings Help is almost 17!

MaryO Uncategorized , , , , , , , ,

It’s Nearly Our Birthday!

It’s unbelievable but the idea for Cushing’s Help and Support arrived 17 years ago tonight. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

Thanks to a now defunct Microsoft program called FrontPage, the first one-page “website” (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000.

Stay tuned for the celebration tomorrow!

📅 Conference on Adrenal Insufficiency

MaryO Interviews, Meetings and Conferences , ,

Save the Dates!!  March 23-25, 2018 

Conference on Adrenal Insufficiency

Kansas City, MO

We’re thrilled to announce the date for AIU’s first stand alone conference for Adrenal Insufficiency. We have some incredible speakers lined up and hope you’ll come join us. A list of speakers will be included with registration information in September/October.

Conference Details

Here’s what you need to know:

  • There will be sessions to address the needs of affected adults and children
  • Registration will include snacks at an evening reception held Friday night, lunches on Saturday & Sunday, and all sessions.
  • Dates:  March 23 @1:00 p.m – March 25 @ 1:00 p.m. 2018
  • The conference will be held at the Embassy Suites Kansas City Airport Hotel. They offer a free shuttle, in room refrigerators and hot breakfast. On site child care available for an additional fee

Be sure to watch for more details on our website and join our FB event.

Registration will open in September/October once our program is complete. *Please wait until registration opens to book your room. We’ll have several reserved at a discount rate. 

  • AIU will be actively seeking sponsors and fundraising in order to make the conference affordable. Please join our FB event or contact@aiunited.org if you would like to help.

📅 Don’t forget! Webinar with Dr. Friedman, TODAY, July 16, 2017

MaryO Interviews, Meetings and Conferences , , , , ,

Join Dr. Theodore Friedman for an informative webinar on the endocrine causes of hair loss in women. Dr. Friedman will discuss what hormones to measure if a woman is experiencing hair loss. He will discuss how to optimize hormone replacement to minimize or reverse hair loss. There will be plenty of time for questions and discussion.

Sunday, July 16, 2017 at 5:00 pm Pacific Daylight Time, 8:00 pm Eastern Daylight Time

Meeting number (access code): 808 128 401

Meeting password: hormones

join the meeting here.

Join by phone Audio connection:

+1-855-797-9485 US Toll free

+1-415-655-0002 US Toll

Global call-in numbers
Show toll-free dialing restrictions

Access code: 808 128 401

You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the video conference will be posted on goodhormonehealth.com a few days after.

You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.

Dr. Friedman has been our guest four times on BlogTalkRadio.  Listen to one of his past interviews here: http://www.blogtalkradio.com/cushingshelp/2012/04/03/dr-theodore-friedman-returns-for-his-fourth-interview

🔵 New on the Message Boards ~ July 15, 2017

MaryO Uncategorized , , , , , , , , , , , , , , ,

 

A quick summary of some of this week’s activity on the Cushing’s Help message boards.

A new question about the cost vs benefits of growth hormone under the topic Growth Hormone

A newbie who is not yet diagnosed but has Bi lateral adrenal tumors

Information about Webinar: Coping With the Ups and Downs of Pituitary Disorders

A new Image Gallery, A Dancer’s 40 lbs Weight Gain in under 2 years + symptoms

The first picture shows me in peak performance shape weighing about 105 lbs standing at 5’4″ contrasted with how I look now at about 147 lbs with swollen legs&arms, puffy red face, fat above the collar bone and on the neck, and lots of weight gain in the butt/thigh area. It really looks like I don’t have a neck anymore.

Following are photos of how my face has steadily changed every few months. Notice how I used to have a very defined heart-shaped face with a pointy chin, and now have a round face with jowls and numerous neck lines/rolls that extend past my collar bone.

The question was asked: Has anyone stayed in a hospital for multiple days of inpatient testing?

A new member from Nottingham, UK was told she had cyclical edema, then PCOS which all turned out to be Cushing’s.

 

There’s other stuff happening but you’ll just have to read the boards to find out what!

(Please note that I’m sharing these from the Cushings-Help.com message boards. You must be a logged-in member of that board to read them. Log in or register at http://cushings.invisionzone.com )

Please join us!

 

📅 Webinar: Coping With the Ups and Downs of Pituitary Disorders

MaryO Interviews, Meetings and Conferences , , , ,

Presented by

Linda M. Rio, M.A., MFT

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

DATE:  July 17, 2017
TIME:  10:00 AM – 11:00 AM Pacific Daylight Time/1:00 PM – 2:00 PM Eastern Daylight Time

 

Webinar Learning Objectives:

By attending this webinar participants will:

  1. Be able to identify at least 3 mental health symptoms that are common to those diagnosed with a pituitary disorder.
  2. Understand basics of “trauma” and its potential role in the etiology of some pituitary disorders.
  3. Know how the medical/physiological aspects of pituitary tumors and other pituitary disorders can interact and affect the mental health of patients.
  4. Recognize the potential impact on the family for those with a member with a pituitary disorder.
  5. Learn some positive coping skills for both pituitary patients and their family members.

Presenter Bio:

Linda has been a Marriage & Family Therapist (MFT) for over thirty years. She is also the editor/author of The Hormone Factor in Mental Health: Bridging the Mind-body Gap (2014), which includes contributions from some of the world’s top experts in endocrinology, medical family therapy, nutrition, patient advocacy as well as real accounts from patients and their family members. Linda was on the editorial team for Pituitary Disorders Diagnosis and Management (2013), and co-author with her daughter, Tara, of a book about eating disorders. She has authored dozens of articles for professionals as well as the general public on a variety of topics, appeared on radio and T.V. Linda and her husband, Lou, just celebrated their 48th anniversary. They have two children and 3 granddaughters who are now in college.

🔵 New on the Message Boards

MaryO Uncategorized , , , ,

 

A new feature! A weekly (or thereabouts) summary of the Message Board features.

There has been a discussion about a new state regulation that went into effect July 1st, affecting insurance that will not cover anything ordered or prescribed by out-of-state doctors that aren’t enrolled in some quality control database. Find that here.

There have been Gallery and Blog updates as well a newcomer wondering about PCOS vs Cushing’s.

The “Reputation” system is back so you can vote for posts that you especially like – but not your own.  Sorry!

I’ve made one board – What do *YOU* Think – for people to post questions and get answers from other members.

There’s other stuff happening but I just thought of this post today and didn’t keep track.

(Please note that I’m sharing these from the Cushings-Help.com message boards. You must be a logged-in member of that board to read them. Log in or register at http://cushings.invisionzone.com )

📅 Webinar with Dr. Friedman July 16, 2017

MaryO Interviews, Meetings and Conferences , , , , ,

Join Dr. Theodore Friedman for an informative webinar on the endocrine causes of hair loss in women. Dr. Friedman will discuss what hormones to measure if a woman is experiencing hair loss. He will discuss how to optimize hormone replacement to minimize or reverse hair loss. There will be plenty of time for questions and discussion.

Sunday, July 16, 2017 at 5:00 pm Pacific Daylight Time, 8:00 pm Eastern Daylight Time

Meeting number (access code): 808 128 401

Meeting password: hormones

join the meeting here.

Join by phone Audio connection:

+1-855-797-9485 US Toll free

+1-415-655-0002 US Toll

Global call-in numbers
Show toll-free dialing restrictions

Access code: 808 128 401

You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the video conference will be posted on goodhormonehealth.com a few days after.

You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.

Dr. Friedman has been our guest four times on BlogTalkRadio.  Listen to one of his past interviews here: http://www.blogtalkradio.com/cushingshelp/2012/04/03/dr-theodore-friedman-returns-for-his-fourth-interview