“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 daily. STEROIDS! The medicine that is supposedly really dangerous and has horrible side effects. And yeah, my medicine does have some have some evil side effects, especially if my dosing is just slightly off.
Cortef is the brand name for hydrocortisone. It is the most commonly used medicine to treat Addison’s Disease. I think I started out taking it three times a day? My medicine and dosage has been switched up so many times that I honestly don’t remember my first dosage.
I know during cross country season, I would take a couple of pills before I ran. Hydrocortisone is much more pleasant when it is taken with food, otherwise you just feel icky. My cross country coach thought I was crazy when he learned that I would eat a full breakfast and then complete his workout. He preferred to run on an empty stomach. I preferred to not feel sick from my morning meds.
You cannot sleep in.
The problem with taking medicine in the morning is the fact that you must take it around the same time each morning. During the weekdays, it was pretty simple to take my morning dose at the same time. I would wake up for school, eat breakfast and take my medicine.
During the weekends, I would want to sleep in. My mom and I quickly realized the importance of timing the hard way. If I took my medicine late, my entire day was thrown off. I felt horrible and acted like a brat. My father and brother wanted nothing to do with me. So my mom would come into my room at 8am on the weekends with a cup of water, my medicine, and a little snack. She would wake me up and force me to take the pills. Then she would tell me I could go back to sleep.
But, I couldn’t go back to sleep. Hydrocortisone woke my body up. Have you ever heard of a 16 year old who is happy to get up early on a Saturday? But the consequences of not taking my medicine around the same time were way worse. I’m very thankful for my mom and her determination to get my medicine in me no matter how mad I was at her.
A New Routine
I have since then changed medicines and dosages so that the timing of my morning dose is not nearly as critical as it was in high school. Similar to how I had to learn about hunger and an appetite, I had to realize that the stereotypical teenage life was out of the question for me. I could never sleep in.
And to this day, I still can’t really sleep in. But I’ll blame my cats for that.