I’m wondering if anyone post surgery is dealing with PTSD, specifically feeling like you are re-experiencing Cushings when you are having anxiety. I’m almost 3 years post surgery and have regular panic attacks where I feel like I am re-living having the disease
Please either respond here or in the comments below.
The EPIC Foundation would like to recognize Mary Kelly O’Connor as a pioneer in the Cushing’s community as an advocate and life changer! Mary Kelly O’Connor is Person of the Month for May, 2018!
Mary Kelly O’Connor is the founder of Cushing’s Help and has been providing support to the Cushing’s community for almost 20 years! Mary’s life changed in 1983! She began noticing several weird symptoms. The first symptom she noticed was an abrupt cessation of her menstrual period. Her gynecologist confirmed that she was not pregnant but had no good explanation for why this was happening. Then she began experiencing extreme fatigue which required her to take frequent naps throughout the day.
Many weird and seemingly random symptoms began appearing. Mary grew a beard (Hirsutism), gained weight even though she was on Weight Watchers and working out at the gym nearly every day, developed chronic pain, developed what is called a “moon face” and a “buffalo hump” on the back of her neck, and developed stretch marks. Mary also developed mood symptoms including depression.
Mary eventually came across a little article in the Ladies Home Journal magazine that said “If you have these symptoms…ask your doctor about Cushing’s”. After that, Mary began assertively seeking answers. However, doctors would say that Cushing’s Disease is too rare and that there was no possible way that she had it!
In 1986, Mary developed a symptom that really caught her husband’s attention-she began bruising very easily and bleeding under her skin. Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked into a possibility of Cushing’s. Mary was referred to an endocrinologist who ran further tests.
The endocrinologist confirmed Cushing’s but ultimately Mary O was referred to NIH (National Institutes of Health). NIH was doing a clinical trial of Cushing’s. While she was at NIH, Mary O was gaining about a pound a day! Adrenal Cushing’s was ruled out so they knew that the tumor, which was the culprit, was in the pituitary.
The MRI was not able to locate the tumor which is typical with Cushing’s pituitary tumors. The next step was an Inferior Petrosal Sinus Sampling Test, IPSS. Ultimately, this test did show where her tumor was located.
On November 3, 1987, the surgeon, Dr. Ed Oldfield, performed the brain surgery to treat Mary O’s Cushing’s Disease. Mary O achieved remission from Cushing’s and she gets tested regularly to confirm that she has sustained remission.
Because of Mary O’s experience of being sick and the difficulty in finding help and a diagnosis, she decided to create a safe space to support others and to increase awareness. The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then expanded. Today, in 2017, they have thousands of members!
Mary O is the pioneer for bringing people together in this format from all over the world! This is incredible considering that this was not even a concept when she was going through her journey in the 80s! This has become a movement of empowerment, as people are participating in their own diagnosis, testing, and treatment! Also, it was very difficult for patients to connect with one another many years ago. However, now, thanks to Mary O, patients are able to reach each other and not feel so alone!
Mary O has a blog radio show where she has conducted interviews with influential people in the community including doctors, mental health experts, and other professionals. She has also been able to interview many patients who heal by sharing their stories with each other.
Mary O wants to support, educate, and share! She has been able to provide support to an entire community of people on her own and with very little funding. She puts her heart and soul into this work because she cares deeply about this community! Mary O has been able to turn her adversity into an opportunity to walk in her purpose to change lives!
Mary Kelly O’Connor is definitely someone you should know! The EPIC Foundation proudly works in alliance with Mary Kelly O’Connor the founder of Cushing’s Help, a foundation dedicated to giving Cushing’s patients valuable information, a space to share their stories, and a place to connect with one another. To learn more information about Mary O and her work, you can go to her website at http://cushings-help.com/ Together, We are EPIC!
From http://www.epictogether.org/mary-oconnor/
A long-time member of the Cushing’s Help message boards, AutumnOMA , gave me permission to share info about these wonderful Cushing’s Awareness Stickers she has made:
CUSHING’S AWARENESS RIBBON STICKERS ARE HERE and you can get your own!!!
April is CUSHING’S Awareness Month. In honor of raising awareness, I decided to use my original Cushing’s Awareness Ribbon art to create a sticker.
In 2005, just after my pituitary surgery, while I was at home recovering and suffering thru the weening process, I decided to create an artful awareness ribbon that spoke to the beauty within each Cushie Warrior. This is why…
Cushings’s changes us. Emotionally, spiritually and physically. It takes a toll. I felt wounded beyond my medical issues. I no longer recognized my own face staring back at me from the mirror. My body took on a form of its own that was unrecognizable to me. My heart and soul ached for what I had lost because of this disease. I felt judged on appearance alone. I forgot who I was. I forgot how to see past the physical things that I couldn’t control and the daily pain. I forgot the carefree beauty of simply being alive.
I had struggled for years for a diagnosis and almost lost myself, my mind and everything I held dear. But I had made it through to the other side. Diagnosis and surgery – finally! But it was still difficult. I needed to know that I could find my inner strength to keep at it. I had to trust in my own strength and resilience to adjust to changes and find joy in the life I had. I had to believe that I had not endured what I had for no reason.
The simple truth of the matter was that I wasn’t sure how to do any of that. It felt too big; too hard. The only thing I knew with certainty was that if I could be brave enough to share my story and help raise awareness for the rare disease I was living with, maybe I could help one person…and helping one person – just one person- know they were not alone…well that was reason enough to try.
And so I set out to raise awareness and hopefully offer support to other by means of sharing my journey.
The first thing I decided was that I wanted an awareness ribbon to wear. I wanted to proudly display (like all those pretty little pink ribbons that are everywhere) that I too survived a life altering disease and I did it with little support.? There wasn’t a large Foundation like Komen, raiding money to find a cure for me. Heck, Doctors didn’t even know what Cushing’s was, let alone the vast majority of the public in general. But I wanted to pin something pretty on my shirt. I wanted an awareness ribbon that embodied hope and beauty. I wanted to wear a ribbon that would inspire people to ask me what it stood for. And so…I made my own.
As an artist, I like to create things that make me feel something. I like to create from a place of inspiration that feels good and comfortable to my soul.
I used to think that flowers, cut, in a garden or otherwise were a waste of time, effort and money because the bloom and die so quickly. But what I came to realize was that was what in fact made them so special. No matter how short the length of time they were around was, they still grew and bloomed into a spectacular show (even if for just a short while) and brought smiles and beauty to the world. What a wonderful gift to be grateful for.
For me, flowers never fail to make me smile. They are fragile, but but resilient. They are colorful and happy. They freely give their beauty for all to enjoy…they were perfect in my mind for an awareness ribbon. And from that thought came the piece of art that is the Cushing’s Awareness Ribbon or blue and yellow flowers.
I am very proud of it. And I am proud to offer these stickers with my art ribbon to help raise awareness.
These stickers are 2.5”x2.5” full color vinyl circles (approximately the size of your palm.).
Profits made from the sale of these stickers will be donated to help fund organizations that work hard to offer continued support and help for those struggling with Cushing’s – whether that be getting a diagnosis, making it through recovery or learning to live with the changes the disease brings about in our lives.
If you would like to purchase stickers please see the attached picture that include all the details about pricing and payment.
Here’s to us all remembering our inner beauty and finding a way to let it shine despite this disease…or maybe because we have this disease and realize how amazing we are as survivors!
Survey for Cushies who’ve had treatment!
Fellow Cushing’s Survivors NEED YOUR VOICES and recovery experiences to help assess our needs and guide advocacy projects within the medical community! Adults of all Cushie types welcome!
Google-Form Survey: http://bit.ly/CushingsRecoverySurvey. Results will be anonymous!
Questions? Reach out: CushingsRecovery@gmail.com
Developed by Andrea Patten, Andrea Hauenstein, & Karen H.
As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.
The series is still going on, so if you’d like to be a part of this, just let me know. You can fill out this form and check off that you want to do an interview – Add Your Bio
There are currently 89 interviews in our series. This is the second one:
Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.
Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/10/cushings-members
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April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.
Thanks to Robin for this wonderful past logo! I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.
As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year. More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.
How fitting that this challenge should begin on April Fool’s Day. So much of Cushing’s Syndrome/Disease makes us Cushies seem like we’re the April Fool. Maybe, just maybe, it’s the doctors who are the April Fools…
Doctors tell us Cushing’s is too rare – you couldn’t possibly have it. April Fools!
All you have to do is exercise and diet. You’ll feel better. April Fools!
Those bruises on your legs? You’re just clumsy. April Fools!
Sorry you’re growing all that hair on your chin. That happens as you age, you know. April Fools!
Did you say you sleep all day? You’re just lazy. If you exercised more, you’d have more energy. April Fools!
You don’t have stretch marks. April Fools!
You have stretch marks but they are the wrong [color/length/direction] April Fools!
The hump on the back of your neck is from your poor posture. April Fools!
Your MRI didn’t show a tumor. You couldn’t have Cushing’s. April Fools!
This is all in your mind. Take this prescription for antidepressants and go home. April Fools!
If you have this one surgery, your life will get back to normal within a few months. April Fools!
What? You had transsphenoidal surgery for Cushing’s? You wasted your time and money. April Fools!
I am the doctor. I know everything. Do not try to find out any information online. You could not have Cushing’s. It’s too rare… April FOOL!
All this reminds me of a wonderful video a message board member posted a while ago:
So now – who is the April Fool? It wasn’t me. Don’t let it be you, either!
A guest on the message boards asks:
Is it possible to have cushing disease without high blood pressure? they are experiencing a lot of the other symptoms kidney stones, headache, fatigue, joint pain, stretch marks on back, abdomen, arms, breasts, hair loss, obesity in stomach area, potbelly, thin legs, memory issues, thinning of skin, irregular periods, oily skin, acne, puffy face etc.
Please respond here or on the message boards at http://cushings.invisionzone.com/topic/54396-i-have-a-strange-question-may-even-be-a-dumb-question
Thanks for your help!
