Not Like I Thought

I've learned, and continue to learn, that things don't always turn out like you think or plan. This is a hard lesson for me. I've always been a planner. I had always had a clear idea of who I was and where I was going. Cushings didn't share the same vision. That was and is still a bitter pill for me.

 

I had my first MRI about 6 weeks after the surgery and it had come back ok, other than the "possible scar tissue" noted by the radiologist that was showing just to the right of where my tumor had been.

I had been working hard in my aqua therapy and going to gentle yoga. I was eating carefully and trying to stay focused.

 

Needless to say, as the first New Year came into the picture after my surgery, I found myself over six months post op and NOT in the place that I thought I would be. I was finishing up my aqua therapy and close to wrapping up the weaning process. But, I did not feel good. I was still having some really bad days. Actually, I was still having more bad days than good. Some days i simply couldn't get out of bed.

 

My relationship with my endocrinologist was not working out. He was set that I was cured and he dismissed all the issues that I came to him with just as every doctor before him had done. Of course that didn't settle well with me. My vision was still bad and I couldn't drive. I was sad, still fat and feeling bad. It was a toxic combination, but I tried really hard to be positive.

 

I did have some things going for me. I was able to use my long-term disability insurance and so the fact that I was not cleared to go back to work was not as bad as it could have been.

 

Despite all this, my medical team was certain that progressing as I they anticipated. The problem was that my progress was not what "I" anticipated.

 

I worked hard at keeping myself busy and involving myself in things that mattered to me. I took up a lost passion - painting. I discovered that the emotion and trauma that had become my life was good for my creativity, and better yet, it was a good release.

 

My true friends became evident. I talk about this a lot, but I was amazed how many people simply can't deal with sickness. Some people disappeared from my life completely. Some people, people I considered to be close friends, said awful things, like: "Your illness is simply mind over matter. You are choosing to make yourself sick my believing you are sick. If you want to be well, visualize it and you will be." And then there were angels, like my now dear friend Alison who just showed up and became a friend. She didn't accept excuses, she didn't judge, she was just there - SOLID! For these people, I am grateful! Their friendship carried me more times that I could ever repay.

 

I became attached to the members of the support group I frequented. I was in a weird, negative, frustrated place. But, despite my own emotional turmoil, I spent the spring of 2006 focusing on raising awareness for Cushings. Once again I reached out to friends and family and the media as we approached April 2006. We were hoping to get April 8th recognized as National Cushings Awareness Day for the first time. We succeeded!

 

Here is the note I wrote to the local news station in Omaha and the subsequent interview they did in honor of Cushings Awareness Day, April 8th, 2006:

4-5-2006  Hello KMTV!  My name is Autumn Stinton.  I am a CUSHING'S DISEASE Survivor.  This rare disease affects only 10-15 in  every 1 million Americans.  I just found out from Senator Nelson's office that last night, April 4th, 2006, the U.S. senate unanimously passed resolution 423 to make April 8th, National Cushing's Awareness Day.  We are VERY excited about this as we have been working for quite some time to get this passed.  I would love to share my story with you in hopes that we can raise awareness in our community and help others who may be suffering.  Please feel free to contact me.