The way it was.

Posted on April 23, 2012 by MaryO

Catherine doesn’t have Cushing’s, although she was tested for it.  Her blog post is part of the Cushing’s Awareness Challenge and it echoes how we often feel.  I actually posted about it in my Day Twenty-three post, as well.

Catherine said, in part:

So today I’d like to tell you about one of the very lowest moments in my struggle to figure out what was wrong with me.  Not because I particularly want to revisit it, but because I know that when I read of what other people (mainly women, mainly Cushing’s sufferers) had been through and survived, I felt inspired.  I felt that I was not alone and that the things I was experiencing could be overcome.

via The way it was..

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Day Twenty-Three, Cushing’s Awareness Challenge

Posted on April 23, 2012 by MaryO

So often during the diagnosis phase of Cushing’s I felt like this picture – I was walking alone to an unknown place with an unknown future.

My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors.  In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends.  My first hope was from a magazine (see Day Six)

After I got that first glimmer of hope, it was off to the library to try to understand medical texts.  I would pick out words I did understand – and it was more words each trip.  All my research led me to Cushing’s.

Unfortunately, the research didn’t lead me to doctors who could help for over 3 years.  That contributed greatly to the loneliness.  If a Doctor says you’re not sick, friends and family are going to believe the doctor, not you.  After all, he’s the one trained to know what’s wrong, or find out.

I was so grateful when I finally got to NIH and was so nice not to be alone with this mystery illness.  I was also surprised to learn, awful as I felt, there were Cushies much worse off than I was.

I am so glad that the Internet is here now helping us all know that we’re not alone anymore.

 

We’re all in this together with help, support, research, just being there.  I love this quote from Catherine at http://wheniwasyou.wordpress.com/2012/03/31/wheniwasyou/

Mary, I am delighted to see you here. Cushings – because of the persistent central obesity caused by (we know now) the lack of growth hormone plus the hypothyroidism I was diagnosed with (but for which treatment was ineffective due to my lack of cortisol) – was one of the things I considered as an explanation for my symptoms. Your site was enormously educational and helpful to me in figuring out what might be happening to me. Those other patient testimonies I referred to? Many of them were the bios you posted. Thank you so much for commenting. I am so grateful for the support and encouragement. I really hope that my experiences will help other undiagnosed hypopituitary patients find their way to a diagnosis. I often used to dream that one day I’d get to say to others what was so often said to me: don’t give up, there will be an answer. I kept believing in myself because people I hadn’t even met believed in me. Now I am finally here and I do hope my story will help others to have faith in their own instincts.

Thanks again. Please do keep in touch.

Catherine

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