Archives

Facebook

April 8th is Cushings Awareness Day. I seem to forget about this day every year until my fellow “Cushies” remind me through their posts giving thanks and remembering the man who discovered the disease. Harvey Cushing. My Cushings and hypothyroidism journey started in my early 20s. I was 41 when I was finally given a diagnosis for my symptoms, something other than “you’re too young”, “you’re being lazy”, “push away from the table”, “your fatigue is from running around after 3 kids”. I don’t reflect on the illness very often but am very grateful for God’s guidance to get me on a path to healing and for Mary Kelly O’Connor and her diligence in creating a support group website that many of us feel was literally a lifesaver. I still have some after effects of the disease and didn’t heal quite as nicely as some but am thankful to be here today. Still have concentration, fatigue, and weight issues but do my best to eat whole foods, stay active, and enjoy life. I didn’t want to age like this but I’m making the best of it! Listen to your body, stay positive, and be your own advocate!

Janice B

From Facebook

Yes, Susan, I know. I think I joined the group in 2014. Unfortunately for me, it was 2 years after my pit surgery. I didn’t know it existed when I was going through Cushing’s. And Mary has been so kind and generous to me with her help. She offered to share one of my videos on her blog. She has worked so hard for all of us over all those years to give us support. I feel she offers the most knowledgable and current information more than any other Cushing’s support sites out there. I list her site as a resource on my website. I can’t sing her praises enough. A courageous, selfless, generous, tireless person who works so very hard in our best interests.

Lili

Mary, I’d like to stay active on your site.  I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure…

I just know I am grateful to you and this site.

From Lili’s bio

Sally C

I just realized with Facebook I haven’t been here now for years. Mary saved my life with her site and I had so many good times with her in real life. I did a search to see if old Penelopee was still here and she is :) perhaps some new people can enjoy the craziness of Cushies at Sea :)

From the Message Boards

Donna

I just wanted to thank you for your willingness to help me during this difficult time in my life. This has been by far the worst thing that’s ever happened to me in my life. I especially appreciate the help of your website. I have learned so much from other people’s experiences both good and bad. Thank you for all that you do to help others. ((:

~ On the Message Boards

Jessica H

Today is National Cushing’s Awareness Day.

My story with Cushing’s has been shared before. I was laughed at, ridiculed, and told to “diet and exercise” for many, many years by doctors who had no clue what I had. I had no clue. It took over 25 years with this disease before I finally saw a doctor who cared and helped me. I had Cushing’s Disease. Now to fix my new health issues I have a secondary form of Cushing’s bit thanks to Mary Kelly O’Connor and the support she has created for thousands of people I am stronger and ready for the fight.

Why do we share? Because there are a lot of people with this disease who have doctors like I had. Very few doctors even have half a clue what Cushing’s is. They look at the symptoms separately and do not put them all together into the whole disease. Nor do most doctors know how to test for it. Or how to read those tests. Let us know if you need help.

~ From Facebook