Tuesday, May 6, 2014

Cushing's Patients Story for MAY! Yay!

Happy May! So I have an idea that I want to start some new blog posts that are about experiences that others have had with Cushing's. I will still write occasionally about myself here and there but I want to start focusing about other topics. So get ready! If you want to share your story please email me at: yumnguyen07@yahoo.com or vannievan12@yahoo.com
You can be in any stage of this process or any kind of advice you would like to share. You can choose to be anonymous =]

I am honored to share the story of one of the first Cushie sisters I have talked to. She has been extremely helpful with my whole process and was an angel sent to me during my hard times. Here is our short interview.

(Click^ to view full picture) Our Cushie Sister's transformation
 ME: Wow you didn't look overweight or classic "textbook" Cushing's.

 Cushie Sister: Yeah, that's part of the reason the doctors didn't really believe.  But I was exercising like crazy and eating nothing.  I should have been super skinny. But, I do think it prevented me from getting obese. 

ME: What was your biggest obstacle looking back at that time before and during?

Cushie Sister: I guess the biggest obstacle while having Cushing's was knowing something was off but being told nothing was wrong.  I definitely felt like I was a crazy woman. 

After surgery, I was expecting to feel great right away and the insane tiredness was unexpected.  It was like a heavy, wet blanket on me for almost a year.  Also, I didn't like being dependent on the hydro (steroids), and had it in my head that if I weaned, I'd recover faster.  That's not actually true - it's actually detrimental.  You can't force your adrenal gland to wake up; it just takes time.

Now, I feel like the world is available to me and I am open to life.  It's the best feeling ever, so in some ways, I'm grateful for Cushing's for giving me new eyes to see it.

Me: any advice you can share to other viewers or patients?
Cushie Sister: as far as advice, I know it's the hardest thing, and I'm not sure that I could have done it but... I think it is important to separate yourself from the disease.  You have/had Cushing's but you, the person, are separate from the disease.  In some ways, I felt more important because I had Cushing's.  I needed the disease to feel special.  That was a mindset that was difficult to shake once I was well. 

There it is guys. Thank you for the informative advice and congratulations on your awesome progress!

2 comments:

  1. Great advice on separating yourself from the disease!

    ReplyDelete