NotSoCushie

On Dec 12th, I am speaking at a sold-out event and telling half of a funny story, then posting it on YouTube, To hear the rest of the story people have to go to my website which is all about Cushing's disease. Every day I see people who I am certain have Cushing's but don't know it. I want to reach these people and the general public. What title can I use for my video? I need your help with this. The story is much like Abbott and Costello's Who's on second, what's on third routine. But there has to be a connection to cushing's. So far, I have: Is it obesity or Cushing's disease? When I get the title and post the video, I need the support of everyone here to view it and go to my website. If you could share and get family and friends to do the same that would be greatly appreciated. Wouldn't it be great if the video went viral and so many people would learn about Cushing's? We can make this happen if I get your support. Thanks everyone. Keep working on a better tite for me. Can't wait to see your suggestions. Thanks again. jan

I am looking for some place like The Mayo clinic or Endocrinologists that would be interested in setting up a dietary study with their Cushing's patients, I am having great success with my specialized diet in lessening the symptoms of cushing's and want to help others get a better quality of life while living with this disease. The first picture is me with Cushing's in 2013 before surgery. the next two pictures are me now with a cushing's recurrence while on my specialized diet. For 3 years I used my body as a science experiment with foods. I don't have a moon face, I have not gained any weight, my girth is much less and my energy and strength are much better than the first time I had Cushing's. The only difference is my diet. For 2 years my endo refused to test me for cushing's again because I did not look the way I should. I had to get other doctors to do the first and secong level tests then I brought those results to my endo and asked him to do the dex suppression test. All tests confirmed Cushing's recurrence. He still won't believe me that my diet has anything to do with the way I look or feel. I am the proof, but he still wont beieve me. What will it take for people to listen to us and believe us????

Where in Northern Ont. I lived in Bancroft for 20 years, just 75 minutes from Algonquin Park. Know that cold that makes the inside of your nose stick together when you breath in through your nose.

I'm in St. Catharines, Ontario. I just hosted a dinner party for 10 people using only the food I can eat. Before all my recipes were heavy with cream sauces, cheeses, bacon, fatty fatty and more fat. They were my guinea pigs. They liked it. Even had them sample some toast flavoured with poultry seasoning because I like stuffing. They liked the idea of trying food they had never prepared like mine before. I replace pasta noodles with spiralized zucchini, rice in stuffed peppers with cauliflower florets, have a great blueberry and raspberry balsamic sauce for my salmon, etc. Just getting started with my new recipes. Am embracing this new life style to make it work for life. Where are you from?

Thanks for the link. Really interesting. We are on the same page. Dr. F. even says it can help with brain fog. I'm doing a lot of what he suggests only even stricter. The vegetables are the trickiest but I eat all vegetables on his acceptable list except parsnips, peas, winter and butternut squash and cooked carrots because all of these are starchy according to google. However raw carrots are not starchy and are allowed. I eat all fruit except bananas. All meats and fish, but no dairy of any kind and no nuts. My niece is having dietary problems too. I live in Canada, she in Australia. I am going to make videos of some of my recipes for her. I make toast from cauliflower and add flavor with curry, coriander and fresh rosemary and other flavor filled versions. This discussion gave me an idea. Since I am making this video for my niece maybe I could share it with the other cushies. When I had cushings my sister would play Gloria Gaynor's, "I Will Survive" and dance for me because I couldn't. She made me sing the chorus until I was screaming I Will Survive. While I'm cooking, I can play Gloria's song and dance in the kitchen. Give to others the hope my sister gave to me. Like you, I feel if I can help even one person feel better while coping with cushings it is worth my time. And I can end each video with my motto that kept me going. Shit happens. It is what it is. Keep putting one foot in front of the other. Stay calm and carry on. Thanks Shaw. You inspired me.

Sorry, I did get you mixed up with someone else. Love the "success if I can sew a button back on. " too funny. I love your frankness and appreciate the discussion. I should have made my point clearer and am glad you pointed it out to me. When one gets the tumor, no diet will cure it, but I think when one has cushings on this diet one will not gain near as much weight and will have more energy than if they continue on with their usual eating habits. It may even make living with the brain fog easier. My brain fog actually went away. These were my experiences when I had cushing symptoms again from being given too much prednisone in the hospital during my adrenal crises. This diet is bringing me back to normal, but then this time I didn't get a tumor. So this cushings episode was not like the other with the pit tumor. I wish when I had the pit tumor, I knew about the diet. Then I would have followed it strictly recording any results. There can be no down side to this starch free diet. And if it helps in stabilizing the weight gain, giving more energy and lessening the brain fog I still say its worth promoting, but in a responsible way by saying up front when someone has a tumor this diet is NOT a cure only an experiment to see if it helps the way I say it can. Thanks for the insight Shaw. Great talking to you. Best wishes for you always.

Really informative. Thanks. Where are you in this cycle? I read you had unsuccessful pit surgery but are now getting better after last surgery. That's great. Are you still making the dolls? When you are up to it I'd love to buy one. I had successful pit surgery, uterine cancer, and adrenal insufficiency. Recovering from an adrenal crisis from Sept. 2016. Have learned eating starchy foods gives me all my cushing's symptoms back again. After eating something I shouldn't, I get the cushing's symptoms then I figure out what it was I ate that made me sick, take it out of my diet, then after a month I'm better again. At least I can control this. But I have to be strict with this life style, but it is worth it when I feel great again. By doing this diet, I know I am preventing cushing's from coming back again. If you are interested in trying this, I want to help you. I know in my heart starchy foods give us Cushings but no one will believe me or listen to me. This is the answer to cushings but no one cares. Desperately wanting to help people to get better like me. I feel like I am saving myself from the agony of cushings and want to do the same for you and others.

Hi Shaw: Thanks for replying. How does alcohol affect the HPA axis and what is the HPA axis? Did you have your gallbladder out?

Hi Cushies: Without alcohol, I felt like I was walking around in a brain fog dream state. Did anyone with Cushings disease notice that when they drank alcohol they could drink a much larger amount than ever before without getting a buzz or being drunk?