I’m not the type of girl to sit back and be passive. If someone tells me not to do something, I normally end up doing it. A bit rebellious? Yes. Has this gotten me into trouble before? Yes. But I also think this fighting spirit has helped me greatly deal...
Reading time: 2 min
I recently read a study conducted in 1999 by The British Psychological Society. The full study can be found here. However I will provide a brief summary. The goal of this study was to determine how someone’s attitude towards their chronic disease affects the way they cope with a specific focus...
Reading time: 4 min
The Evening The night started out routine enough. My younger brother had a band concert at our school that our whole family attended. After the concert, we went out with a couple of families for gelato and fellowship. I remember speaking to a mom who had two sons attending the...
Reading time: 4 min
“Amber, you have primary adrenal insufficiency. You will have to take cortef for the rest of your life.” Although I consider my diagnosis the day I became free, it was also the day that I swallowed some very hard news. For me to live, I would have to take steroids...
Reading time: 2 min
Do you remember when you first felt hungry? I do. I remember the car ride. I was fifteen and my mom was driving. I had just started my treatment for Addison’s disease. It was actually my first day on my new medicine. “Mom… uh… my stomach feels funny.” “Funny like...
Reading time: 1 min
I was texting a friend about how at times my Addison’s Disease can be scary. He asked me a simple question. “What’s scary about it?” “I think I have this beast controlled and then I’m reminded how I don’t.” “The disease?” “Yeah. Maybe I should view it as something I...
Reading time: 1 min
Dear Amber, I’m grateful you remember that day and test. I like your version much better. I can laugh at my version now, but at the time not so much.You had interrogated me with your best logical questions and pleas for well over an hour before we arrived at the...
Reading time: 3 min
The year was 2005. As my mother and I sat in the waiting room of my endocrinologist, I looked around observing the other patients. There were eight of us here for the same two-hour blood test. I was the youngest at fifteen. The next person closest in age was in...
Reading time: 2 min
Dear Amber, I used to describe you as “Taz” the little Tasmanian devil cartoon who was calm and mild mannered one moment then wild, uncontrollable and irrational in the very next second. It was the strangest thing and NO parenting book, class, or article had prepared me for this phenomenon...
Reading time: 1 min
Dear Amber, I knew something else was terribly wrong but had no substantial evidence to prove it. Culture shock had struck all four of us as a family and it was very difficult to navigate. The awful feelings (both physically and mentally) you were experiencing were reasonable and somewhat expected...
Reading time: 1 min
Does your generic HC look like this? If yes, switch to a different brand ASAP. In The Nightmare Revisited, I made the bold claim that I am allergic to the generic hydrocortisone. It was one of the five things that triggered my April Crisis. This has generated much discussion through various...
Reading time: 6 min
The Project In 2016, I participated in a project for a Nevada photographer. Her goal was to publish a book containing stories of people finding “Beauty in the Desert.” Below is her description of her project. Everyone has fought a battle in their own lives and has gone through something...
Reading time: 4 min
My mom and I have been in your shoes. I remember the doctor coming in and hurriedly explaining the disease to us. No cure. Diseased for life. Steroid Dependent. Be mindful of stress. And yet, I can live a “normal” life? Over the years, we slowly realized that we were...
Reading time: 2 min
First of all, welcome to the family. Although I am not sure of the exact path you took to become part of the “broken adrenal glands club” (also known as Adrenal Insufficiency), I would like to extend to you the warmest welcome. As someone who has been on this journey...
Reading time: 2 min
I began using a Medtronic MiniMed Paradigm 715 pump to infuse solu-cortef as my main treatment for my Adrenal Insufficiency in early 2014. MM715 by Medtronics. I could not publicly announce it when I first started treatment because the door opened up in an unorthodox and unexpected way. Also, please...
Reading time: 2 min
Dear readers, I would like to explain more about my journey on the cortisol pump. When I returned from Malaysia, I attempted to return to my Endo #6. While I was living abroad, she joined a practice with Endo #4, a doctor who did not play nice with me. When...
Reading time: 2 min
Abuser, I am sorry that our marriage was not what you pictured. I have always been honest with you. My name is Amber. I live with an incurable disease. You often stated that you wanted to marry Amber and not Addison’s. However, you cannot have one without the other. They...
Reading time: 2 min
I was texting a friend about how at times my Addison’s Disease can be scary. He asked me a simple question. “What’s scary about it?” “I think I have this beast controlled and then I’m reminded how I don’t.” “The disease?” “Yeah. Maybe I should view it as something I...
Reading time: 1 min
I formerly worked as a product engineer in the semi-conductor field. My goal was to identify a problem as quickly as possible, figure out how it happened, and fix it. I got bonus points if I fixed it in such a fashion so that it will never happen again. My...
Reading time: 4 min
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