It’s been my biggest blessing in life to help make many people’s lives better. Through the newly available dial-up internet, I joined forces with a small group of wonderful Cushing’s advocates. Cathy Gifford and Mary O’Connor, were my first Cushing’s friends, and are still dear friends twenty one years later. Together we got things moving. Mary, has built the largest Cushing’s support boards, and her admirable dedication continues to help and support patients from all over the world, Cushing’s Help and Support (cushings-help.com).
As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.
The series is still going on, so if you’d like to be a part of this, just let me know. You can fill out this form and check off that you want to do an interview – Add Your Bio
There are currently 89 interviews in our series. This is the second one:
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.
I “acquired” this from another site and changed the names to protect the innocent…
As you know many of us Cushies have had or have an addiction to Googling.
I suggest anyone who feels compelled to google symptoms go to the message boards to ask for support instead of typing these or any words such as “buffalo hump” in the google search engine. When this is done all roads lead to one thing…… You Eat Too Much!; You’re Depressed!
So, anyone who is about to hit enter on their computer which feeds their Google addiction…. go to the message boards to ask for help. One of the other Cushies who have achieved “Google sobriety” will help you down of the ledge.
1. Admit for now that you are powerless over your urge to Google.
2. Believe that a power greater than you (that would be other Cushies) can help you off that ledge
3. Decide to turn your “fingers” over to a higher power as you understand it.
4. Make a searching and fearless inventory of what you hope to gain from googling.
5. Admit to yourself and to another human being the exact nature of your addiction to Google.
6. Allow other Cushies to assist you when you are so scared you are thinking about googling symptoms.
7. Humbly ask for Xanax, Klonopin or Cortef in order to calm yourself from googling symptoms
8. Make a list of all the diseases you think you have or have had and survived and have a burning ceremony and then…. take a nap.
9. Cite all Google sites you have searched diseases on and delete them from your favorites/history.
10. When you start thinking….STOP….. do something else, like take an inventory of your test results.
11. Seek through prayer and/or meditation to improve your thought process. Do not travel to “OMG’ or “What if” land (this is a serious suggestion).
12. Having had a spiritual awakening as a result of these steps, carry this message to all your Cushie friends and anyone else you know who has a Google addiction.
13. Now I know there isn’t a 13th step, however, if you have noticed you are drinking too much wine or taking too many pills, please remember there are other 12 step programs for that, lol…
So, what about it – what are *your* suggestions to cure Google Addiction?
Hi I recently became aware of my possible buffalo hump after xrays of my neck were normal except for a fat pad at the base of my neck.
After reading of some of the symptoms of Cushings it was a light bulb moment with so many symptoms being similar to what I’m going through.
I have extra fat in my sternal notch as well, looking at these pictures do I have a moon face, etc.
I’m waiting for the results of my 24 hour urine test.
Thought I would ask to see what you all thought. Thanks for your help.
This potential Cushie has posted several photos here.
Today is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year on July 21, 2000)
As of today, we have 73,024 members who have made countless posts.
Find the message boards here: http://cushings.invisionzone.com/
It’s unbelievable but the idea for Cushing’s Help and Support arrived 20 years ago late last night. 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.
All our Cushing’s-related sites:
- Addison’s Help
- Addison’s Help (Blog)
- Adrenal Crisis (Facebook)
- Adrenal Insufficiency Virginia (Facebook)
- Cushing’s and Addison’s Documents
- Cushing’s Help Message Boards
- Cushie Blogger, mostly used for Cushing’s Awareness Posts and meeting information
- Cushie Bloggers (Blog)
- Cushing’s and Addison’s Documents
- Cushing’s and Cancer (Blog)
- Cushing’s Bios
- Cushing’s Help
- Cushing’s Help and Support
- Cushing’s Help Live Interviews
- Cushing’s Help Message Boards
- Cushing’s Help Organization
- Cushing’s Help Podcasts
- Cushing’s News Feed
- Cushing’s Support
- MaryO Cushing’s Bio
- Twitter Cushings Help Organization, Inc
It’s unbelievable but the idea for Cushing’s Help and Support arrived 20 years ago tonight. That’s a long time for anything online.
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.
The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!
Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.
Other sites in the Cushing’s Help “Family”
Can someone please offer help, ive been suffering for a year and just got blood results today with a high cortisol reading. My doctor said that my contraceptive pill could have caused this, however, I am not on the regular pill but on the POP progesteron only pill.
Is anyone aware of if this raises cortisol levels the same way the regular combined pill does?
Any help would be so very much appreciated!
A guest on the Cushing’s Help message boards asked:
I’ve been searching every possible alternative explanation. I really hoped I just had a Lipoma but GP was pretty confident no.
I’ve gained about 40lbs in the past year, I bruise easily and I have a Buffalo Hump. Cycle is regular, my mood is good, well ya know pandemic, home schooling, owning a business … Lol I don’t think I’m suffering any unusual stress or anxiety though. I am anxious over the time it’s taking to get any info.
I had blood drawn and an upcoming sono, date TBD, but don’t see my GP for 5 wks!
Can I get blood results over ph and skip right to Endocrinologist if Cortisol is high? Any input of speeding this along?
Anyone else with only a few symptoms?
Can you help Ellie out? Please respond here or on the Message boards.
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.