Wednesday, April 16, 2014

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

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 took 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.

MY LIFE IS A DELICATE BALANCE.

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?

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Here's a story about a lady. Things lined up pretty well for her. Someone paid attention. This doesn't happen every time, so don't fooled by the ending. -mm


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



http://m.jems.com/article/patient-care/female-patient-found-unconscious-unknown