I too agree with Susan. I think there is plenty of research available; it just is not being read by anyone but those who are suffering from it. I think Cushings needs to be brought to the forefront. It needs more media attention; more people need to know how much we have to suffer to get a diagnosis, and then how much more we have to suffer to get cured.
My 18 year old son was reading some of my posts and responses and he said "Mom, you should just go on a diet, start working out and gain more weight, oh never mind because then the doctors would just tell you that your not being honest with yourself.?
But then I was like, you know, you might be on to something. I should go on a diet and start working out. I should start a video diary of the daily life of a Cushing?s patient. I could get on the scale every morning and show how much I weigh that day, I could tape my workout (on the days that I could actually have energy to workout), I could tape what I eat throughout the day, breakfast, lunch, dinner, snacks. I could video the differences that occur to my appearance on the days I am not feeling well; the red skin, the bruising, the acne, the fluid retention, the stretch marks, hand all the other horrible things that happen to our bodies. I could show them the bathtub after I stand over it every morning to comb my hair so they coudl see how much my hair falls out everyday. I should show the world what it is we Cushies go through day in day out, show them how tried we are, how much pain we feel, and so on. Then when the doctors try to tell me something is not true I could show him/her my video and say "See I am not lying". And then I could send my video out to all the news programs like 20/20, Primetime Investigates, Dr. Phil, Oprah, etc.
Even better, maybe a bunch of us could start a daily video diary to send to the different news programs. We have to try to get more attention to this terrible disease that is ruining our lives and the lives of our families. I think that is just one more thing the doctors don?t have a clue about, is how this disease affects our families, friends and co-workers.
Sorry, its just that I am very passionate about this and I am trying to come up with something / anything to bring attention to those of us who are suffering and battling this disease.
So, is anyone up to doing a daily video dairy with me?