Saturday, December 15, 2012

The Diagnosis

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 her early twenties.

It started out awkwardly. The eight of us starred at each other wondering about our uniting factor. I was reminded of the movie The Breakfast Club. We were complete strangers from a variety of backgrounds yet we were all in one small room for a specific amount of time. One woman decided to break the silence and began to speak. As she spoke, I realized that she was quite knowledgeable. She talked about how she was diabetic, had tendinitis, horrific allergies, and now possibly this. Yet when she said this, she did not state it with anger but with a tone of joy in her voice.

She retold a conversation she had between the endocrinologist and her. She discovered a statistic that stated it takes on average eleven years to diagnose a person with this because it so often goes misdiagnosed. When she told that to the endocrinologist, he laughed and said, “No, it takes longer than that.” I looked at my mom as she nodded silently in agreement. I had been misdiagnosed for fourteen years. The woman looked around at the group in the waiting room, as if she was on the verge of saying something significant. When she decided to speak, I realized that I would never forget the words that she said.

“We are so blessed to be sitting here in this waiting room, participating in this test. We have the capability to live the rest of our lives free from this. It’s treatable. We can live without hindrance. We have the rest of our lives to live…” Her voice slowly started to drop off as I realized the seven began to look at me. It was quite obvious that I was the youngest in the room. The oldest was a man, probably in his late fifties. The second to oldest was the woman who just spoke. Here I was, a teenager among adults, about to receive one of the greatest gifts in life. Freedom. It was a freedom from an unknown medical condition that had plagued me my entire life. We all were receiving the same gift, yet mine seem so much more valuable due to my young age.

The two hours ended. As we all gathered our belongings in order to return to our different homes I remember the lady saying, “Well, I guess I’ll never see you again. Good luck and may you never forget this blessing.”

Within two weeks, it was time for me to return to my endocrinologist to see the results of the test. As he looked over the chart from the two-hour test, he merely stated, “Amber, you have primary adrenal insufficiency. You will have to take Cortef for the rest of your life.”

That day, I became free.

I was unsure of what this freedom looked like. I was unsure of what lay ahead. But at least I had a diagnosis. I had a name that I could associate with my suffering.

Primary Adrenal Insufficiency.

Three years later, the name was changed to Addison's Disease.

3 comments:

  1. Hi, I am a mother and my 5 year old son has just been diagnosed with PAI on Sunday. We are going in this week to have additional testing done to see if it is Addisons. They are also going to be testing my 9 year old son as he has been hospitalized a few times under somewhat similar conditions so they suspect he has PAI too. It has been a roller coaster the past 2 years, and finally we seem to have answers as to why my 2 boys ended up in the hospital when they got sick.

    My question to you is why did it take 3 years for them to determine it was Addison's? Did antibodies not show up in initial testing?

    Needless to say this has been a crazy week. I have been reading as much as I can to help understand how I best can help my Thomas. Thank you for this blog. It is comforting to know that there are people out there that understand exactly what we are going through.

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    Replies
    1. Hi Crissy,

      It sounds like it has indeed been a crazy week for you! I am so thankful you stumbled upon my blog. There are a wealth of resources available online and even some amazing FB support groups that are such an encouragement.

      To answer your question about the diagnosis name change, I don't think they ever tested me for the antibodies. My first endocrinologist left out a couple of key tests that would have provided a bit more information about my case. He didn't want to call it "Addison's" but he did want to start me on the steroids.

      Three years later, I moved to another state and saw a new endocrinologist. It was too late to run the tests because I had already been on treatment during those three years, which skews the results. This new endo decided to use process of elimination. I can't remember all the tests he ran, but he was the doctor that confidently stated "Addison's Disease."

      Good luck as you begin this journey! I am so incredibly blessed to have a mom that has walked beside me as I deal with the up's and down's of Addison's. Thomas's life might look a little different moving forward, BUT with proper treatment and a good support group there's no reason that he should surrender any of his dreams.

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    2. Thanks! It gives me alot of hope. As scary as all this is because it is new information, I understand that feeling of freedom. It finally has given me an explanation as to why I ended up in the hospital with my son whenever he got sick. They always chalked his sickness up to getting 'a really bad virus' instead of actually looking into what caused him to crash so fast. We live in AZ...and from what I have read you at one time had too. We finally got these answers when I took him to Phoenix Children's Hospital instead of Cardon Children's. At Cardons all they did was treat the symptoms, and then send him home when he was stable. PCH actually took the time to figure out why...and for that I am thankful.

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