Sunday, April 1, 2012

Stuff and Nonsense and Cushing's

I've been slacking off with the blogging, the camper and the crafting although I did finally name the Casita ... she's now "Storybook Cottage" which incorporates my love of reading, my love of all things cottage, the tiny little space and the fact that whenever I look at the flower wall pops I put in there, I think of Storybook Land at Disney.  So ... it fits.

On the crafting front, I finally finished the afghan for my daughter that took me nearly a year to do.  So I'm project-less which is wonderful.

I'm also being tested for Cushing's syndrome which kind of sucks.  For those of you who have never heard of this, it's an ugly little disease that takes over your life and screws up everything.  It causes excess cortisol (the stress hormone) and can cause all kinds of nasty side effects like a round face, fat neck, fat trunk, fatigue, mood swings, osteoporosis, facial rashes, muscle weakness, high blood pressure, elevated glucose, etc.

I have every single symptom of this disease but my lab tests are crazy.  Some are off the charts high, some are normal.  After going to 2 endocrinologists, I finally have found one that believes me (a rarity since so many doctors write off symptoms as this, that or the other).  She thinks I may have cyclic Cushing's which is even harder to diagnose because I could have elevated levels one day and normal ones the next.  So I'm in for a roller coaster ride of testing until they can determine exactly what is causing this.  If/when I'm diagnosed, I'll likely have to have a tumor removed from my adrenal gland or my pituitary gland ... what fun.  But the good thing is, at least I'll know why I've felt like crap for so many years.

The main thing I just want to scream to everyone is "THIS ISN'T ME!"  I'm not the person this potential disease has turned me into ... I don't want attention, I don't want to be sick, I just want my life back.

For those of you who have suffered with this disease OR know anyone who has, feel free to drop me a line.  I'd love to share experiences.

Until then, onward and upward!

1 comment:

  1. I've popped round so many times, but never see you blog anymore. Thought I'd leave a comment today anyway. Visiting everyone from Bridge and Beyond. Fall is upon, people need our help, hope you're getting your yarn busy making something.