Sharmyn McGraw searched for answers for seven years for whatever it was that was killing her; finally she diagnosed herself via the Internet with Cushing’s disease, caused by a pituitary brain tumor. http://www.hormone411.org
Read Sharmyn’s bio at https://cushingsbios.com/2019/03/16/sharmyn-in-the-media/
Dr. Karen Thames shared these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation
She has graciously given me permission to share them here and in the CushieWiki and on the Cushing’s Help message boards.
Find these pages here, under the Cushing’s Myths and Facts category.
Thanks, Karen!
From Danielle’s Blog http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-3.html
One of my least favorite things about my life with chronic illness is having imaging appointments. Â Whether it’s my yearly brain MRI, or a chest X-ray, the whole process is uncomfortable, and sometimes even painful.
Usually, when a physician wants me to have imaging, they will schedule an appointment, usually the soonest available is a week or two out, sometimes more depending on the test. You usually have to arrive at the hospital 15-30 minutes before your scheduled appointment time, on top of that, there is typically a wait…
Interview with Judy, the mother of two Cushing’s patients, and her daughter, Jess, a high school student with Cushing’s. Robin (staticnrg) hosted.
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Read the whole article at  https://zebraontheside.wordpress.com/
Insomnia was one of the first things that troubled me enough to try to get help for with Cushingâs Disease. By my last year in music school, I had flipped my schedule around. I felt best and got more done if I practiced through the night and slept through the day. That year was wonderful for productivity because I was able to do what worked best with my body. A couple of years later, my sleeping problems had taken over my life. I was trying to get a diagnosis. In school for a second and third bachelorâs degree while working at Starbucks, I barely slept. Because I wasnât sleeping, I decided to just keep busy….
This is one of the suggestions from the Cushing’s Awareness Challenge post:
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Â Make a calendar showing which days you had what symptoms. Â Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
