My Journey with Addison’s

The story of Anna

In the fall of 2007, shortly after I began third grade, I grew pretty sick. I was much more tired than usual, and even ended up having to miss quite a bit of school because of my fatigue. My parents brought to the pediatrician’s office, and I was told that I had some sort of virus. It was supposed to clear up within just a few days. Except, I remember it was almost two weeks later and I was still out of school. My parents brought me back to the doctor. I was tested for mono, it was negative. I was swabbed for the flu, it was also negative. I remember everyone was starting to question whether or not I was actually sick, or just didn’t feel like going to school anymore eventually they forced me to go back, as any parents would. But, I still felt ill. I complained to them often. I was incredibly dizzy and had a constant headache. They took me back to the doctor. I remember being brought into the hallway and the doctor having me read an eye chart. I couldn’t see any of it. Not even the top line. She recommended I see an optometrist, thinking this could help with some of my symptoms. But, it wasn’t that my vision was blurry. I was just SO dizzy that I wasn’t seeing straight. A few weeks later, my symptoms grew worse. I was now not only fatigued, but vomiting quite often and losing even more weight. I was once again was brought back to the doctor. This time, they sent me to the emergency room. While in the ER, I was given an IV and told I was dehydrated. That was it. Then I was sent home. Over the next month, I was sick off and on. I remember I had to stop opening presents Christmas morning so that I could run to the bathroom and throw up. Everyone assumed it was just because I ate a few too many Oreos the night before. Flash forward to mid-January. I was chosen to read the Pledge of Allegiance on the school announcements. I still wasn’t feeling the best but I was so excited to be picked, there wasn’t any chance of me missing school that day. I, along with one of my classmates, headed to the office first thing that morning. Right as the clock struck 9:15, we began to read the note card. Except, something was weird. I couldn’t read the card at all. I vividly remember thinking to myself that I was glad I had it memorized, because otherwise I wouldn’t have been able to say it at all. As soon as the pledge concluded, I headed to the nurse. I didn’t even ask my teacher first. Something wasn’t right. I knew it. Later that day, I sat in the children’s hospital waiting room. It was January 18. I was pushed ahead of many of the other patients that were there, because the woman working triage said “I looked terrible.” Again, I was told I was dehydrated, but also that they wanted me to be kept overnight to be watched. I was moved to patient room instead of the emergency room. The next day, the nurse told me the same thing, that I needed to stay overnight, and my eyes filled with tears. I remember her looking at me, perhaps confused, because I hadn’t cried until that very moment. “Is that okay?”, she asked. And it was… except, that tomorrow was my birthday. My ninth birthday. I spent my ninth birthday in the hospital… and my room didn’t even get decorated, because my birthday fell on a Sunday, and the child life specialists didn’t work weekends. I did get a cake with my breakfast that day, but, it had a hair in it. I was in the hospital for almost three weeks. I saw a number of doctors, nurses, and other staff. While I was there, I did, however, finally receive a diagnosis. I had Addison’s Disease. I know now that if I hadn’t gone to the hospital that day, my symptoms could’ve led me to a coma, or even worse. Addison’s means your adrenal glands have ceased to function. They no longer produce any cortisol and therefore a synthetic replacement is needed along with other hormones. The cause is unknown, but cortisol is essential for life. The normal human body makes the appropriate amount of cortisol 24/7 and is changing constantly in response to what the body needs at any given point in time. Lifting your arm uses cortisol. Cortisol affects almost every major system in the body, heart rate, electrolyte balance, blood pressure, the circulatory system, the neurological system, etc. Because my body can’t make any, I have to maintain enough for a “normal” day but also constantly be adjusting things according to what my body is experiencing in order to keep from getting too low, which would cause an adrenal crisis and potentially cause me to have a heart attack, stroke, go into a coma or die. If I’m overly stressed, injured, sick, etc., etc., anything that causes stress to the body, my body can use all of its supply very quickly and I can have a crisis. So while it is a treatable illness, I have been hospitalized a number of times since my initial diagnosis. I am nineteen now, and it has been almost ten years, but I was sent to the emergency room twice my first semester of school, and by far my favorite story to tell, is the adrenal crisis I experienced in Costa Rica my junior year of high school. Even though there are days the illness doesn’t affect me much, I know that my medication is keeping me alive. I am really very, very fortunate to have led and to be able to lead the life I have.