❣️Happy 19th Birthday Cushing’s Help!

It’s unbelievable but the idea for Cushing’s Help and Support arrived 19 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:

 

❣️We’re nearly 19!

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 19 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!

The message boards are still active and we have a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

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.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

 

maryo colorful zebra

❓Can You Help? Newbie Question about CBD Oil

This is on the message boards at http://cushings.invisionzone.com/tags/help%20to%20lower%20cortisol%3F/. If you can’t access it, respond here and I’ll share.

I would like to know if anybody has tried CBD oils to lower their cortisol levels? I have asked my Dr but he isn’t knowledgeable about whether CBD oils are useful for lowering cortisol levels. If anybody has tried them or has any information on there use in this field I would be interested in find…

 

🎤 Archived Interview: Symptoms and Diagnosis: Cushing’s Message Board Members

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.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/10/cushings-members

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🦓 Day 1: Cushing’s Awareness Challenge 2019

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

30-posts

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.


 

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

📅 Rare Disease Day 2019

rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

My husband also passes out cards and brochures.

Adding to websites, blogs and more which I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency

And growth hormone deficiency

If you’re interested, you can read my bio here: https://cushingsbios.com/2018/10/28/maryo-pituitary-bio/

What are YOU doing for Rare Disease Day?

 

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‼️ Message Board Upgrade Today

Please let me know if there are any issues after this upgrade.  Find the boards at http://cushings.invisionzone.com

 

Good news! Version 4.4.6 of Invision Community is now available.

Major New Features / Enhancements

  • Post Before Registering
  • Animated GIFs
  • AdminCP Notification Center
  • New Email Features:
    • Email Statistics
    • Email Advertisements
    • Unfollow Without Logging In
  • SEO Improvements:
    • Improved pagination with page number now in path (rather than query string) and unique page titles for paginated pages.
    • Improved use of canonical tags.
    • Improved handling of empty containers and profiles to reduce soft 404s.
    • Improved JSON-LD markup, adding @id tags and fixing URLs for comments.
    • Removed page output hidden by JavaScript.
  • Performance Improvements:
    • Added Lazy Loading for images, which will speed up page rendering.
    • Added HTTP/2 support with prefetch/preload.
    • Added support for Brotli compression.
    • Improved default profile photos to use inline SVGs rather than generated images, which will speed up page rendering.
    • Improved browser caching of pages served by the guest page cache, which will reduce the number of requests reaching the server.
    • Improved handing of session data for guests to reduce database reads for guests.
    • Optimized images to reduce file size for faster page rendering.
    • Other minor performance improvements to reduce database queries and fix unnecessary code execution.
  • Commerce Store Filters allow customers to filter products by price, review, stock, or custom admin-defined filters.

Core

  • Added setting to display user group formatting in more areas (see 6 New Micro Features).
  • Added less intrusive browser notification prompt in Notifications menu (see 6 New Micro Features).
  • Added ability to show sidebar blocks to only certain types of devices (see 6 New Micro Features).
  • Added ability for club owners to reorder the navigation tabs (see 6 New Micro Features).
  • Added ability for announcements to be linked to an URL or be a title only (see 6 New Micro Features), improved consistency in how announcements are shown in different areas.
  • Improved UI for entering time intervals in AdminCP settings (see 6 New Micro Features).
  • Added a new Icons & Logos section in the AdminCP which allows providing logos for use when sharing links from the community, adding the community as a home screen app on a mobile device (along with additional settings for a PWA manifest to control certain aspects the community’s behaviour when used in this way), and in Safari’s favourites menus and pinned tabs on macOS.
  • Added a new UI for attachments, showing a box with some information about the file, rather than a plain line (see Turbo charging loading speeds).

Removed Features

  • Removed EmojiOne-style emojis due to licensing issues.
  • Removed Gravatar support due to privacy concerns and performance issues.
  • Removed password hashes when downloading a member list from the AdminCP. This is for security, to reduce the ease of obtaining sensitive data if the AdminCP is ever compromised.
  • Removed the name of the content (e.g. topic) from the “Next Unread” link which could consume significant server resources on large communities.