Tuesday, November 7, 2017

Join me! Be an Advocacy Troll

Fed up with endocrine info, I've been posting on the Facebook pages of EndocrineWeb and the American Association for Clinical Endocrinology posts where they could have easily included info about high cortisol and Cushing's. I'd like to think of it as "advocacy trolling." 😎 I encourage ALL Cushies to help me with this mission. Check twitter and get them there, too (one day I'll tweet but don't now!). Please like those two FB pages so you won't miss my comments and I'll see yours! Add other endocrine sites below so we swarm them with our advocacy trolling. 

We must have more contact with the endocrinologist community. There is safety in numbers. Endos dismiss us and ridicule us one on one behind closed doors, but together, we can show them how many of us there really are!

It's about time there was support for Cushing's!

I encourage you to create an account and read, Read, READ on Cushings-help.com.
It's free!
As you may have heard me say before, I learned so much of my Cushing's knowledge from the Cushing's Help website, founded by MaryO. I found the following blurb and I was just astonished at how much information is contained on one site.

The Cushing's Help message boards were founded on September 30, 2000. There are over 383,000 posts and 72,576 members as well as a chat room, photo gallery and much more. Over the years, we've surely covered your issues!

While many post on Facebook now, there is so much merit to posts organized by topics AND reading information about the person posting based on information they provide in their signature. For me, I was always watching the Cushies way deeper into their journey than me, and I ultimately would place more weight on those responses while still taking all comments under consideration. With facebook, there is no way to know what each person commenting has gone through (undiagnosed or three surgeries including a BLA). That makes it harder and more confusing to me. I encourage you to create a username and password and start reading! Learn something on your own. Read about others' stories... you will be quite amazed to see how relevant it is to you... even without posting a new topic about yourself. As much as we Cushies struggle uniquely with the symptoms as they present and how they affected our lives and relationships, you will learn that much of our experience also overlaps. Focus on that parts that are the same, and you will find yourself filled with more knowledge than you had before you started.

So get going.  And be sure to thank MaryO when you see her. She has maintained Cushing's Help single-handedly for over 17 years. Bravo MaryO and thanks to all those who posted about their lives on that site... YEARS before we even had Facebook!!

To join Cushings-help.org, click here.