My official journey with Cushing’s started in May 2007 when I broke my hip by stumping my toe. Dr fixed me and sent me on my way.
About two weeks later I developed a PE and was in ICU for 5 days. It was there that the drs took note of my appearance (I looked very Cushinoid at this time) and that I had broke a hip the way I did. They sent me to their clinic and the dr there took about 10 minutes of looking at me and asking me questions and told me she thought I had Cushings – which I had never heard of.
So off for test I went and it was confirmed. At this point I had probably already had Cushings for 10 years but my past dr never once really heard my complaints and just told me I was fat and how easy it is to lose weight.
I had to wait till Feb of 2008 to have my first surgery since I was on blood thinner due to the PE. We all thought the surgery was a success but three years later back it came. So another surgery in Jan 2011. Then again three years go by and it’s back.
This time it was decided that surgery wasn’t an option so we went with Gamma Knife radiation. I am now in wait mod to see if it that worked and let me tell you it’s no fun. Not knowing and not going to know for sure for a year or two is really hard.
The meds I’m on (Korlym) really make me sick too. I’ve sometimes wished I had chosen to have my adrenals removed (which if this doesn’t work I will) and just be done with it all.
Some days are easier than others – some days I just want to say the heck with it all but I know that’s not an option. I will never be done with it, as none of us will.
I have great family (the best husband every!) and friends that are there for me but let’s be honest they don’t really know and can’t really understand what we are going thru or how we feel. I say I just want to be normal and me again but honestly I don’t even know what that is. So for me I enjoy the good days and deal with the rough / bad days knowing that God does have my back thru it all.
Good luck to us all!
Kelly Jo
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