Month: April 2025

⁉️ Myth: YOU are the problem and the reason…

MaryO Cushing's Awareness Challenge , , , , , , , ,
Myth: YOU are the problem and the reason for your cortisol levels. Having issues with too much or too little cortisol, the stress hormone, means that YOU are stressing too much or are too anxious. “YOU could control your levels if you would JUST calm down!”
myth-busted
Fact: YOU are NOT the problem! The dysfunction in your body is the problem. It is true that cortisol is your stress hormone or fight or flight hormone. This hormone helps your body compensate for and deal with trauma or stress, both physical and emotional. So, yes, your body does have a reaction to stress.
However, for people with Cushing’s, that hormone goes haywire. Too much cortisol leads to Cushing’s symptoms and having too little cortisol leads to Adrenal Insufficiency. Normally, our bodies’ response to stress is to pump out 10X the amount of your baseline cortisol to cope. If it is not able to do this, it will go into shock and can lead to death unless the emergency protocol is followed with an emergency injection of steroid. No amount of coping skills can “control” one’s physiological response to stress.

📅 Lunch and Learn, Los Angeles California

MaryO Interviews, Meetings and Conferences , , , , ,

Adrenal Insufficiency United’s Lunch & Learn Events are one day mini-conferences located in different cities in the USA. We find great local speakers to lead sessions and give presentations about issues affecting those with adrenal insufficiency. These one day events will be packed full of opportunities giving attendees more chances to ask questions, share their own experiences and network with fellow members of the community.

Los Angeles California

Where: Glendale Embassy Suites by Hilton: 800 North Central Ave, Glendale, CA

When: Saturday May 3rd    9:00 a.m – 4:00 p.m.

Costs: Early Bird Registration $50 per person (through April 1st)

Parking: Included in early bird registration or $12 per vehicle after April 1st

Speakers Include: Dr. Mimi Kim from CHLA, Anat Benshlomo from Cedars-Sinai, Dr. Run Yu from UCLA, Brenda Manzanarez a clinical dietician at CHLA

Schedule & Topics

We are still finalizing our schedule so some time changes may occur. 

8:30 a.m. Check in and networking

9:00 a.m. – 10:30 a.m.  Session on Adrenal Insufficiency and Cognition

10:45 – 12:00  Session on Stress Dosing, Pre-Crisis and Crisis

12:00 – 1:00 Lunch

1: 15 p.m. – 4:00 p.m.      Afternoon Break Out Group Proposed Topics thus far:

  • Injection Training
  • Nutrition and adrenal insufficiency
  • A breakout on Congenital Adrenal Hyperplasia

SIGN UP TO JOIN US! Los Angeles

⁉️ Cushing’s Myths and Facts: Cushing’s is RARE, No one has Cushing’s!

MaryO Cushing's Awareness Challenge , , , , , ,

Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”

myth-busted

Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.

In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non-experts tend to not test accurately and adequately for Cushing’s.

With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.

The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:

Please review the following links:
http://home.comcast.net/~staticnrg/Cushings/LimitationsSC_UFC_dex_mildCS.pdf
http://survivethejourney.blogspot.com/2008/11/new-research-has-shown-cushings.html

* Dr. Karen Ternier Thames

⁉️ Cushing’s Myths and Facts

MaryO Uncategorized , ,

 

Dr. Karen Thames has been sharing these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and in the CushieWiki and on the Cushing’s Help message boards.

Find these pages here, under the Cushing’s Myths and Facts category.

Thanks, Karen!

🦓 From a Past Blogging Challenge ~ Sleep, the Goldilocks and the Three bears of Cushing’s Disease

MaryO Cushing's Awareness Challenge, Other Bloggers , ,

 

Read the whole article at  https://zebraontheside.wordpress.com/

Insomnia was one of the first things that troubled me enough to try to get help for with Cushing’s Disease. By my last year in music school, I had flipped my schedule around. I felt best and got more done if I practiced through the night and slept through the day. That year was wonderful for productivity because I was able to do what worked best with my body. A couple of years later, my sleeping problems had taken over my life. I was trying to get a diagnosis. In school for a second and third bachelor’s degree while working at Starbucks, I barely slept. Because I wasn’t sleeping, I decided to just keep busy….

🦓 Digging deep: Depression, anxiety and suicide

MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge, Other Bloggers , ,

From Cushie Blogger 

We lost a young woman with Cushing’s to suicide in 2014. There are rumors now that another recent loss was suicide as well. In my mind, regardless of what the exact cause was, Cushing’s is at fault.  Cushing’s led them to their deaths just as surely as if it had struck the death blow itself. If that is hard for you to fathom, then please allow me to educate you briefly on this dastardly, “most morbid of diseases” and why I feel the way I do.

Read more at https://muskegfarm.blogspot.com/2018/04/digging-deep-depression-anxiety-and.html

📞 Take Part in a Cushing’s Clinical Trial!

MaryO Cushing's Awareness Challenge , , ,

If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com

2. If you are NOT a member, please click here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.

Cushing’s Syndrome (Hypercortisolism) patients United States
30-minute online survey, compensation is $60

 

Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.How will I be paid?
You will earn $120 (typically) per hour for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.

About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients and family caregivers over $15 million dollars since 2013 for participating in research studies.

🖤 Another loss, just as Cushing’s Awareness Month started again.

MaryO Cushing's Awareness Challenge, Other Bloggers

From Cushie Blogger

Shianne Lombard-Treman passed just three days ago. She had a form of Cushing’s Syndrome caused by adrenal tumors, and I am in remission from Cushing’s Disease caused by a tumor on my pituitary. My heart aches thinking of Shianne and all those we have lost in the last few years. Today marks the start of Cushing’s Disease Awareness Month (and Adrenal Insufficiency Awareness Month – a common result from Cushing’s treatment). I had not committed myself to the annual blogger’s challenge, but the overflowing tears while I watched this video make me wonder if I should…

Read more at https://muskegfarm.blogspot.com/2018/04/another-loss-just-as-cushings-awareness.html

🦓 From a Past Blogging Challenge: Day 1: Blogging with the Cushies

MaryO Cushing's Awareness Challenge, Other Bloggers

Since not too many people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:

MaryO kicks off Cushing’s Awareness Month with a blog post about a testing method that had been discussed for years but many of us haven’t been tested this way. 

From http://cushingsmoxie.blogspot.com/2017/04/day-1-blogging-with-cushies-featuring.html?m=1

🦓 From a Past Blogging Challenge

MaryO Cushing's Awareness Challenge, Other Bloggers ,

 

Since no other people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:

From Danielle’s Blog at http://www.lifewithcushings.com/

Today, I’m going to be talking about my Cushing’s story, which still continues, even 8 years after I was diagnosed.

I remember the moment I realized something wasn’t right.  My mom was taking me to the mall, because none of my jeans fit me anymore.  She was talking about how she wished I would try to lose weight, because she has been overweight most of her life, and didn’t want that for me.  But, I needed pants to wear to school, so I bought another size up.  I remember thinking, nothing has changed.  I didn’t eat more, or less, I hadn’t stopped any activities.  Maybe this was just my metabolism slowing down.

 

Read more here: http://www.lifewithcushings.com/