My advise: HAVE FAITH IN YOURSELF. IF A DOC TELLS YOU THAT YOU DON'T, CAN'T HAVE CUSHING'S THEN FIND ANOTHER DOCTOR WHO WILL LISTEN TO YOU. THERE IS ONE WHO WILL. DO NOT GIVE UP ON YOURSELF, YOU OWE IT TO YOUR FAMILY, FRIENDS AND ALL THOSE WHOSE LIVES YOU ARE LEFT TO TOUCH, MOST OF ALL, YOU OWE IT TO YOURSELF.As the "Mary" mentioned, I'm so glad that I could be of help to other Cushies. When I had my Cushing's over 20 years ago, I never thought that I would meet another Cushing's patient in real life or online. Back then, I'd never even been aware that there was anything like an "online". I'm so glad that people struggling with Cushing's today don't have to suffer anymore thinking that they're the only one who deals with this.
AND STAY HERE! HERE YOU WILL FIND THOSE WHO WILL CARE, LISTEN, AND UNDERSTAND. THOSE WHO WILL WORRY ABOUT YOU AND ALWAYS BE THERE FOR YOU. IF I CAN EVER BE OF HELP, PLEASE FEEL FREE TO PM ME OR WRITE ME DIRECT AT TACHINRN@AOL.COM. I AM SO INDEPTED TO THIS GROUP AND TO MARY WHO CREATED THIS PLACE FOR US TO MEET. I ONLY WANT TO BE ABLE TO GIVE IN RETURN.
Tamera
Because of my work on the website - and, believe me it is a ton of work! - I have had the honor of meeting over a hundred other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more than most endocrinologists will ever see in their entire career. I've also talked to countless others on the phone. Amazing for a "rare" disease!
Reading things like this make everything I try to do feel more validated. Thanks for posting this Robin and thanks for writing it Tamera!
Hi, Mary! I'm so busy this week I'm slow to read your blog. Your site is a wealth of information that if pooled by a researcher and used could really make a break in the diagnosis of Cushing's, I think. But I know that was not and is not the intent of the site. You know I credit your site for saving my life. And I really don't think many realize the magnitude of what you've done. But I do believe most realize the importance. Love ya!!
ReplyDeleteRobin
Aww, thanks, Robin - it's ok. I don't expect anyone to read any of this mishmash of a blog. It's just stuff that's interesting to me and info I might need someday - at least the kidney cancer info.
ReplyDeleteThanks, as always, for your comments. BTW - I don't think that most of the people realize what I;ve done and continue to do every day. But I got myself into this and I'll follow through as long as possible!
Hope you're having a great trip in that plush suite of yours!
Hugs,
Mary