Wednesday, April 16, 2014

Cushing's Awareness Month: My Life is a Delicate Balance

Female Patient found Unconscious with Syringe Nearby
Paramedic's misdiagnosis of drug overdose could have cost patient her life, Journal of Emergency Medical Services, Jul 20, 2012

"A call comes in to 9-1-1 dispatch. “Help” is all that’s spoken before the operator hears the phone hit the floor. The 9-1-1 dispatcher calls back only to get a busy signal. Police and EMS are dispatched for a well-being call. On arrival, the front door is found to be slightly ajar. The crew knocks, but there’s no reply. They find a young woman  lying on the floor... in a pool of vomit."

Sound familiar? This lady is having an adrenal crisis, and the article below from the Journal of Emergency Medical Services explains what happened when the paramedic treated her for a drug overdose instead of recognizing the symptoms of adrenal insufficiency.

Before we get the article, let's be clear. This article is just another example of what we Cushies already know. Medical expertise about our conditions, Cushing's and adrenal insufficiency, is limited, even in the emergency rooms meant to save everyone. We know that doesn't apply to us. We are bombarded with weekly stories detailing horrible treatment at the hands of ER doctors and nurses. Even with an unhelpful doctor, a family member or friend can be the difference, the force that demands attention to our plight.

This is why I am so passionate about advocating for Cushing's Awareness and educating Cushies and their families about the dangers of adrenal crises. I do this as I struggle and because I struggle to deal with the complacency of my own.

I'm confounded as to why family and friends around me aren't too startled or concerned when I say I could die if I forget a dose of medication or if a physical or emotional stressor is more than the medication I consumed for the day. 

Do they think I'm kidding?
Do they think I'm exaggerating?

I would neither kid or exaggerate about my daily situation.

I have been told to "Stop thinking like that" or "That's not ever gonna happen to you."  When I try to explain that I have many friends that have faced adrenal insufficiency and adrenal crisis -- 20 or more a year I'd guess -- they just brush me off. They aren't hearing what I am saying. My feelings aren't just hurt; inside, I am panicking. 

This isn't a punchline or a Debbie Downer moment when I tried to show my life is more delicate that yours.


I tell you this because I am scared.

I tell you this so that if something happens and I fall unconscious in your presence, I can find comfort in the fact that you will help me.

I tell you so that I will feel safe going somewhere without my husband or "out on my own" with someone who doesn't acknowledge or understands my new condition. 

I tell you this because I have a great desire to leave this house occasionally and dip my feet into life and try to live again in the world.

Your response doesn't sit well with me!  Are you in denial? I can't live like that! I can't pretend this doesn't exist. I can't ignore my illness, and frankly, I just can not have you do that either. 

I'm scared shitless that because no one listens to me, no one will help me and I will die accidentally.

People do, you know. Die from this.

Cushies with no adrenals like me or others after pituitary surgery die because people around them didn't know the situation was serious. 

I do not want to die that way.

Can I count on you to listen to me? To let me tell you know what to do for me? 

Can I count on you to say: 

*  Don't worry. I got this.

*  I won't let anything happen to you.

*  Show me how to give you the emergency shot.

*  I will make sure the EMS and ER folks understand the severity of your case.

*  I will show them your medical bracelet.

*  You aren't gonna die on my watch.

Seriously. That's all we want to hear. We want to hear that you love us enough to learn to keep us safe.  We love you, and we want you to love us enough to save us. Will you do that?

Can we count on you to do that?


Here's a story about a lady. Things lined up pretty well for her. Someone paid attention. One doctor out of thousands practicing out there in ERs across the world, on the medical front line, recognized the medications. This doesn't happen every time. Don't fooled by the ending. 

Female Patient found Unconscious with Syringe Nearby - Case of the Month

Cushing's Awareness Month: Thanks but No Thanks

Cushies find that everyone offers unhelpful advice instead of learning about our disease. Frankly, we don't need that kind of help! We would rather you listen to us and give us the opportunity to tell you how Cushing's has changed us. That's what we want the most: for those who love us to understand the devastation and to know that we didn't do this to ourselves.

Robin, the Cushie survivor who blogs at, created all the graphics for us to share during Cushing's Awareness Month. Thanks Robin!

Cushing's Awareness Month: Endos in Short Supply