hammerhead

I wasn't sure where to put this. Mary posted about my book, The Greatest Love Story Ever. But a friend asked my why was I writing this book. I told her because I want to make people aware of Cushing's, but she said my title, description and cover didn't show this and she was right. So I changed all. You can now find my story at www.wattpad.com - type in notSoCushy which is my alias. The New Title: No I"m Not Pregnant.   The description is: If I'm not pregnant then I have to be fat and lazy, right? How about sick? A sickness that makes you fat and so exhausted it's difficult to take even a few steps. I couldn't convince my doctor or husband of that, but I will convince you as you follow me through the cracks in live to discover I am a Cushie. The cover is a picture of me then. I am back to normal (lost 50 pounds and still loosing). Since recovering, people don't recognize me. This answered why I am writing, but I need to see the bigger picture. I need to know WHY DO YOU WANT ME TO WRITE IT???  What do you think needs telling? I'm supposed to put in tags so people can find me. Like if I was writing about war, I could use history as a tag. I need something people who know nothing about the disease could put in AND FIND ME. I really need your ideas and would appreciate your help. THANKS.    

OMG that's my story. I thought i just had bad doctors and thought I was an exception, so I complained to our College of Physicians and Surgeons in Canada because my family doctor and another doctor wouldn't test me for Cushings. The college did a 6 month investigation into my allegations and reprimanded both doctors. They each had to write up 2-4 page reports on what is cushings and psychosis and how to properly test for it. When I tried to take it further and sue the doctors, I was told by a court medical consultant that the time it took for me to get a proper diagnoses was not inordinate. After reading bios I learned I wasn't the exception to the rule, I was the rule. This is how we with Cushing's are treated. There has to be something we can do. About 13 years ago, I had a hair analysis done which broke down the chemicals in my body and explained the impact of chemical combinations in my system. It was amazing. It told me at least twice that I had an endocrine problem. My chiropractor did this and neither he nor I knew where to go with this info. I had never heard of the endocrine system before or an endocrinologist so I didn't pursue it. I wonder now if this could be another way of testing for Cushing's. Has anyone heard whether or not hair analysis are being considered for Cushing's?    

Thanks Mary for reminding us of how we can help. I am new and unfortunately did't discover this site until recently. I had pituitary surgery in 3 April/2013 then 8 months later on 28 Nov/2013 had cancer surgery. I am back to normal and loving and living life doing all I did before. After surgery I had to have cortisol stimulation which was unsuccessful which means my body is in adrenal failure and I have to take prednisone for the rest of my life. Last week, I was 4 hours late in taking my prednisone and felt sick to my stomach and so weak I had to lean on things to stand up. I had never been told about the symptoms of adrenal crisis and learned about it on this site. I wasn't in adrenal crisis yet but this site taught me about the seriousness of my situation which had never been explained to me. My endo only told me to double up on my prednisone if I were sick, on antibiotics or under a great deal of stress. Thanks to you, I know now to be more diligent in taking my prednisone. Thanks Mary for the shout out about my book THE GREATEST LOVE STORY EVER. Writing it is my way of giving back to let people know how this disease effected my personal life and especially my 38 year marriage. I wanted people to see I was more than a disease and to understand how devastating Cushing's is to the sufferer.