Sunday, November 25, 2012

Hypoglycemia?

After fainting at band camp, the hunt for a proper diagnosis escalated. As a toddler, my doctors were convinced I had hypoglycemia. I would be a normal child one moment and then I would morph into an uncontrollable devil with extremely destructive tantrums. After the destructive mood, I would become ridiculously emotional and be unable to stop my uncontrollable crying. This progression would happen normally under an hour window and would conclude with me "falling asleep" and not remembering any of my mood swings afterwards. My mom discovered that this ordeal could be avoided if I ate every two hours. I never felt hunger and was trained to eat according to a clock. The doctors called it hypoglycemia.

Was it truly hypoglycemia? I went to one endocrinologist who did not believe a word my mom was saying. He requested a very cruel test to prove to her that I wasn't hypoglycemic (I'll save that story for another time). We saw him twice and refused to return.

Mom then found another endocrinologist. She spoke to the office staff explaining to them how she needed a doctor to play "Inspector Gadget" and look at all the evidence. The office staff assured her that this endo would do that. During our first visit, we explained to him the test that the other endo requested. He agreed that it was ridiculous and there were much safer ways to rule out hypoglycemia. He wanted me to wear a constant glucose monitor for a week. I've included an image below. The white part was attached to my hip, while the black box would clip to my pants.

My glucose monitor looked very similar to this. Picture taken from here.

In addition to wearing the monitor, I had to manually prick my finger and check my glucose levels four to five times a day and to record everything I ate with a time stamp. I was thrilled at the end of the week when I could have the huge black box removed from me and stop testing my glucose levels during school hours. A week later, I found myself back in my endo's office with the results of the test.

"Amber, you do not have hypoglycemia. Your night glucose levels do not dip low enough."

At this revelation, I was mad. I began crying tears of anger. What?! No. I must be hypoglycemic. I've believed I was all my life. How dare you tell me different. What else could explain the lack of hunger, the dizziness, the anxiety, and the malaise? Am I imagining these symptoms? Am I imagining my pain? What is wrong with me?

My endocrinologist calmly stated that there was another test that he would like to perform. He was bringing in a specialist specifically to run this test for a couple of his other patients. It was a more in depth blood test that would last two hours. He believed this test could provide me with some definite answers.

What was wrong with me?

Saturday, November 17, 2012

Band Camp

I had a rough year in eighth grade. I moved states summer before and that move was extremely difficult. Most of my struggles in eighth grade came from the fact that I just did not feel well. I could not explain what was wrong, I only knew I felt awful.

So let's add some picture perfect cheerleaders and me... who just felt so out of place. A southern gal who was used to playing football suddenly had to learn about Coach purses and Tiffany's necklaces. Hello different culture. Couple that with the fact that I was continuously feeling worse, but yet I could not explain my pain. Yes, I had a very rough eighth grade year.

However, ninth grade mean high school. It was a fresh start! I would go from a school with thirty eight graders to over seven hundred ninth graders. And I was going to be in the marching band! I was going to attend band camp in Northern Arizona the summer before ninth grade. I was excited, but also anxious.

I don't remember what day of band camp it was, but I do remember that the weather was gorgeous and that I had a good breakfast that morning. We were just doing basic drills that day. Stand at attention. Turn right. Turn left. Turn around. I remember not feeling well, but I did not want to draw any attention to myself.

Then the world went black.

"AMBER! AMBER!! AMBER!!!!"

When I regained consciousness, I realized that my friend and fellow clarinet player was standing over me and shaking me violently while screaming my name. Slowly, the world came back into focus. I was surrounded by people which overwhelmed me. I was extremely confused so I started crying. Someone said I started convulsing on the field. However, no one could tell me how long I was unconscious.

Awesome. I was now the freshman that fainted at band camp. At least that makes a good "this one time at band camp..." story.

My unexpected blackout was the final straw. My mom was determined that there was something else wrong with me. Hypoglycemia was no longer fitting the facts. The hunt for answers just escalated. We had to find a doctor that was willing to search for the answer.

What was wrong with me?

See my mom's response

The t-shirt hides the severe muscle wasting in my arms.
I cannot hold my head straight up nor can I look at the camera.
My dizziness was unmanageably high.

Wednesday, November 14, 2012

The First Letter

The Background

I have asked my mom to help contribute to this blog. I live with this disease, but so often I do not see the entire picture. There are many times that my memory is fuzzy. My mom has been fighting for me for my entire life.

People do not survive in isolation. Also, a chronic disease affects more than just the one diagnosed. My entire family has had to make sacrifices due to Addison's Disease. That is why my mom's voice needs to be heard on this blog.

She has decided to write her posts as letters to me. They will be responses to what I have shared with y'all. Through our combined voices, you will be able to get a clearer picture of what our journey has looked like.

The First Letter

Dear Amber,

It has been a journey, maybe even an adventure at times; and we are just getting started. When you were born and placed in my arms years ago, my thoughts were “She’s beautiful and she’s perfect!” Dad and I were overwhelmed with joy.

We had no way of knowing that you would have to overcome so many obstacles, have to deal with so much pain due to undiagnosed Addison’s, and have to make so many conscientious choices along your journey.

You are choosing to share your private journey (difficulties and successes) of living with this incurable yet manageable disease. I’m so proud of you for letting go of depression and hopelessness and instead you are choosing to live!

You ARE clearly alive!

I am thankful,
Love you much!
Mom

In response to Why Blog? Why Now?

Saturday, November 10, 2012

Why Blog? Why Now?

My name is Amber, and I live with an incurable disease. How's that for a conversation starter?

Prior to 2005, my doctors just believed I suffered from Hypoglycemia. However, several medical crises in 2003 and 2004 led my mom on a mad hunt to find the true answer to my suffering. In 2005 I was diagnosed with Primary Adrenal Insufficiency. In 2008, my diagnosis was formally changed to Addison's Disease.

At the time of my diagnosis, not much was known about the disease and how to successfully live with it. I felt alone and isolated. No one could understand living with an unheard of disease. As years have passed, doctors and I have continued to learned more about this disease and how to successfully manage it so that my life can approach normalcy.

I wanted to start this blog to chronicle some stories of a life with Addison's Disease. Living with a chronic disease that requires daily medicine can be quite difficult at times. It is easy to slip into depression and hopelessness.

I am done doing that.

I choose life. I choose optimism. And I choose to share some of my stories here.

I want people to know that I am Clearly Alive.

Ready to read through my journey? Start Here.

Disclaimer: This blog shares my personal journey and struggles. It is not intended as a substitute for the medical advice of physicians. I am no doctor. I am just an average girl, living with Adrenal Insufficiency fighting constantly to remain Clearly Alive.

Additionally, this site uses affiliated links. When you use the links provided by my blog to purchase things from places such as Zazzle or Amazon, you are helping me raise money for NADF and AIU. Thank you.