Cushing’s Help message board member sherryc presented this PowerPoint at pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.
She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.
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 )
I wasn’t able to attend this year’s Magic Foundation Cushing’s Conference in Chicago, but several of my Cushie friends went.
Love this picture that came up in one of the presentations 🙂
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.
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 )
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!
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 )
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 )
