I can't speak for everyone, but I know for the majority of my illness my family has been very supportive of me. Initially when you bring up a rare disease to your family they don't want to believe that it is even in the realm of possibilities. Cushing's is one of those diseases that most people just don't understand. We can eat a fat free, no carb, low calorie diet and exercise and still gain weight. While trying to exercise we could damage our bodies even more because Cushing's destroys muscle and bones. I managed to break my foot by stepping on a piece of dog food. Who breaks their foot on a piece of dog food? That is just one of the many things this disease has done to weaken my body.
This top 10 things to not say to someone with a Chronic Illness started floating around Facebook a year or so ago. My illness is actually caused by stress, so number seven is quite laughable. Cortisol is a stress hormone, so it is indeed stress. As for number five, it actually is/was in my head! Just thought I would share this because you really do hear some of these things when dealing with a chronic illness such as Cushing's Syndrome.
In July I am looking forward to going to something called The Magic Convention which is hosted by The Magic Foundation. It is being held in Lombard, Illinois which is a suburb of Chicago. My Neurosurgeon, Dr. Ian McCutcheon will be speaking at it along with several well known Endocrinologists and last but not least a dear fellow Cushie who will also be speaking and is a Clinical Psychologist. Dr. Friedman has been a guest speaker for The Magic Convention in the past, but will not be there this year. I am really excited to hear them talk about Pituitary disorders that effect Adults such as Cushing's, Adult Growth Hormone Deficiency and Panhypopituitarism. However, most of all I am looking so forward to meeting some of my fellow Cushie friends who I have gotten to know and love over the years. One of my dearest online friends is coming all the way from Canada and I cannot wait to give her the biggest and most gentle bear hug on earth! These are my people, the ones who understand every little thing I am going through and it's something that no one else on this earth can fully understand except them. I just can't wait to be in a room full of freaks like myself and feel NORMAL for the first time in my life. I think I'm more excited to meet them and go to this convention than to go to Disney and that is saying a lot, folks.
Thank you for sharing in my journey and I hope you will continue along with me as I update on my progress. One day I will be rid of this disease, but I will always carry the scars of my battle.
Let's just pretend she is singing Mrs. Zebra. ;)