As most of you know, Ms. Lauren at our Germantown Campus has Addison’s Disease. This means that Lauren’s body does not produce cortisol. February 28th, was Rare Disease Day and on that day Lauren shared a bit about what it means to have Addison’s Disease. April in Adrenal Insufficiency Awareness Month and we decided that today, April 13th would be known as Lauren’s Day. Because today is Lauren’s Day, she wanted to provide you with a more detailed account of her journey with Addison’s.
For as long as I can remember, I was always sick. Growing up, I would always vomit and doctors weren’t quite sure what was wrong with me. Vomiting became my norm and became a running joke with my friends. For years, vomiting was my main symptom. Then slowly, things started to progressively get worse.
I started becoming faint all the time. I would be at a store and would have to literally sit on the floor in the middle of an isle because my heart would race so fast I thought I was going to collapse. As someone in their late teens and early twenties it was beyond embarrassing. People would stare and I would have absolutely no idea what was going on. I also had no energy at all. I chalked it up to working full time and going to college full time, but deep down I knew something was really off. A normal person wouldn’t close their eyes and literally sleep for hours and hours on end then wake up feeling the same exhaustion they started with.
I saw every possible doctor imaginable. I had over 15 different tests to try and determine what was wrong.
I’ve had doctors try to diagnose me with everything from depression to bulimia. I’ve had doctors tell me I just needed to “take a breath and calm down.” I am so thankful for my family who knew that something was still off.
The vomiting continued for years. I became a pro at vomiting in my car, walking out of class to vomit and vomiting at stores. As sad as it sounds, vomiting for me became normal. I would vomit anywhere from 5-40 times a day. On a “good day”, I would vomit at least 5 times. As you can imagine, the weight loss that came with all the vomiting was horrendous. I was slowly withering away to nothing.
One morning, I had to call into work because I was so sick. I was so physically weak at this point I was crawling from room to room. I thought I was going to collapse at any given moment. My grandparents picked me up and took me to the hospital. The ER doctor looked at me and my chart, and said she had a hunch as to what was wrong with me. She said she remembered something from a college lecture and did a test for Addison’s Disease. It came back positive- I had Primary Adrenal Insufficiency.
Had that doctor skipped that college lecture and not run that test, I am confident that I would not be alive today. That is how deathly low my levels were.
I was so excited that I finally found out what was wrong with me. I thought I could finally live a normal life. I saw an endocrinologist who told me “Lauren, you take a steroid pill and you will feel better.” Sadly, that is not the case. According to their textbooks, this was true. However, after joining an online support group for people with Adrenal Insufficiency, I realized how wrong that statement was.
There is currently no way to check your cortisol levels on a daily basis. It is often a guessing game. In a normal person, if they are sick or their body is experiencing physical
or emotional stress, their body will naturally pump more cortisol through them. Because my body does not produce cortisol, I have to literally guess how much extra steroids to take. Often, I won’t realize right away that my body is internally fighting off an infection and my body will crash into an adrenal crisis. When this happens I have to go to the hospital immediately for a steroid injection through the IV and fluids.
Because of the severity of these Adrenal crisis, my doctor has written me an emergency note to take with me when I go. A portion of my note states, “ Patient has history of recurrent ER visits due to Adrenal crisis. It is very crucial to triage patient promptly, provide IV hydration and give adequate glucocorticoid (IV steroids).
Because Addison’s Disease is so rare, often- even WITH my letter signed by my endocrinologist- I often sit waiting to be seen in the waiting room. In an Addison’s crisis, timing is crucial. People are dying while waiting to be seen. There is no time to be wasted. Once after waiting for about an hour, I had to threaten to go into the parking lot and call 911 to come in by ambulance to get seen immediately. That made them realize how seriously Addison’s Disease was and they immediately took me straight back. This should NEVER, EVER happen!
After being diagnosed with Adrenal Insufficiency in September 2013, my journey can best be described as rocky. Like I said in my previous blog, Addison’s Disease is often referred to as an invisible illness. I could be happy and smiling on the outside, but truly struggling on the inside. A smile can hide so much. People have often asked me if given a choice, if I would rather physically look sick so people knew how much of an impact Addison’s has on me. My answer is and will always be- NO. I would rather have people think of me as a happy smiling person!
I’m currently about halfway through my pregnancy, and even after 5 years with this disease, it still manages to throw me through loops. Because of all the changes in my body right now- and even with extremely close monitoring with my team of doctors- I’ve gone into more Adrenal crises then I ever have. Even so, I continue to stay strong and fight like crazy. This disease will not defeat me. This disease will NOT win.
I hope I was able to share a bit more about my journey with Addison’s disease. If I can leave you with something it would be this: If you feel like something is wrong with you or a family member, keep fighting until you get a diagnosis. It could truly save your life. Thanks Mom and Dad for always believing me and fighting like crazy for a diagnosis! You’ve saved my life.