I don't think we talk about AI (Adrenal Insufficiency) enough. It is scary and it gets ignored all too often. As for AWARENESS....the more the better, right?!? A friend asked about an old note that I posted in 2012. It is worth a moment:
Instituting Protocols for EMS to treat Adrenal Insufficiency and RAISING AWARENESS
July 16, 2012 - AWARENESS – I’ve come to realize in my journey with Cushing's Disease that this word can be the difference between life or death.
My name is Autumn Boyet Stinton . I am a Cushing's Disease survivor. Although, I’m not sure this statement in itself accurately depicts my experience and who I am today as a result. When people say that they are a survivor, it conjures up ideas in one’s mind that an individual has stared down their disease demons and come through the other side a winner. But, if you talk to any Cushie (what we affectionately call ourselves) you may find we are a different kind of survivor. For the majority of us, although we have survived a terrible ordeal in diagnosis, lost ourselves in bodies we don’t recognize, endured physical and emotional pain, not to mention an extensive laundry list of symptoms and treatment, it doesn’t end there. Cushing's continues to haunt us.
Post surgery, (pituitary adenoma removed in June of 2005), I was hopeful that I would have a cure and that I would miraculously begin returning to my life as I have envisioned it - free of pain and able to do the simple day-to-day things that so many people take for granted. However, it simply didn’t work that way for me. I still felt terrible and my recovery was anything but easy. Before long, I was back at my Endocrinologist looking for answers. After a plethora of tests and a few different medical opinions, it was determined that I had flip-flopped from the over production of cortisol with the Cushing's Disease to the under production of cortisol and Adrenal Insufficiency. This brought me to a new level of risk. Many of my body systems had been damaged by exposure to too much cortisol over the extensive period of time while I was mis-diagnosed over and over again with any list of ailments; PCOS, Hyperthyroidism, high cholesterol, migraines, acid reflux, fibromyalgia, chronic kidney stones, MS, asthma, Crones Disease…and the list went on and on. My immune system was weak at best and completely unable to combat even the most benign of illnesses that came my way. Suddenly, it was dangerous for me to be in public or around people as most anything made me sick. Recovery and healing was an excruciating process that took an extensive amount of time.
My Endocrinologist required I get a medical alert bracelet to help protect me if something happened, but I still didn’t understand the severity of the situation. I was uneducated. Looking back, the most frightening thing was that the very professionals I was relying on to save me in the event of an emergency, or a simple collapse of my body as a result of God knows what, they too were unaware of how severe my blight was. I found that each time I ended up in the ER, I learned some other little tid-bit about my condition that seemed so simple and obvious, however I was just learning about it. I picked up tricks and information as I went along, learning the hard way.
I still remember the first Google search I did about Cushing's Disease after my initial, cold, clinical diagnosis. I walked out of the Doctors office with the word Cushing's written on my hand not having any idea what was wrong with me. There was very little information out there about Cushing's at the time. All I could find were articles about dogs and horses. I was frantic and freaked out that I had somehow contracted an animal disease. It was torture. I needed support and help. I had so many questions and no one to answer them. I began to understand the importance of awareness on a level that I could have never grasped prior to this turn of events in my life. I began searching for ways to raise awareness and offer support to others who might be facing what I had and continued to face.
In 2007 I started a Facebook group called CUSHINGS DISEASE. I named it simply in hopes that a simple search would provide quick results for anyone looking for others to connect with. eight years later there are over 900 active members who grace the group with their input, empathy and support for each other. And, there are many other similar groups out there. I am proud to call all these fellow Cushies my friends and family.
We find that we have very similar journeys. We are afflicted by the same symptoms. We endure the same tests, failures, disappointment and challenges. We offer support, understanding and validation to each other that we receive nowhere else. Again, I find it sobering to learn that many of us are better educated and able to offer suggestions to each other than the Doctors that treat us. I believe it is simply a matter of awareness – or lack thereof!
My journey with Cushing's is not over. I have since my diagnosis with Adrenal Insufficiency, flip-flopped once again and the over production of cortisol has caused another tumor to grow on my pituitary, just to the left of where my first one was. Additionally, I continue to have the chronic health problems that have plagued me all along this journey. I have days that are fine. And then I have days that the simple idea of brushing my teeth is more than I am physically able to cope with. My cortisol levels rise and plummet, taking along with them for a rollercoaster ride, my health. I am unable to cope with getting over-heated. I have severe pain in my muscles. I have incapacitating headaches. I am plagued by brain fog. I have issues digesting things. Simply said: I have issues! BUT, I am alive and I will continue to fight!
I have lost two friends in recent months who’s bodies simply gave out. They were young, sick with Cushing's Disease and unaware of the dangers that become life threatening with Adrenal insufficiency. Sick with everyday illnesses, their bodies simply gave out. They were unaware of the dangers of AI and the people around them were unequipped to help them.
My hope is that by telling my story, over and over again, people will become aware. Maybe something I say or share with someone will raise a flag when someone else mentions something about what they are going through. Maybe, telling my story to everyone that will listen will make it evident to the medical community that we need training and education to help save our lives!
Autumn Boyet-Stinton
