The Importance of a Story

My family frequently moved during my childhood. I describe it as less than a military brat but more than the average kid. This makes it difficult for doctors to see my history. They only see a snapshot, a picture. I have to tell them my story. And they have to be willing to listen.

I moved states summer 2008. My original diagnosis records were lost, or jumbled up beyond recognition. These records were from before the time where everything was digitized. I don’t know what blood tests my first endocrinologist ran. I know my baseline cortisol level was low enough for him to go “Adrenal Insufficiency” but I don’t know the numbers.

I do believe he also ran the ACTH stim test, but I never saw the results. When I moved, we had the hardest time getting those original medical records to my new endo. My second endo was left with a lot of questions. We had no answers for him.

This second endocrinologist ran a whole battery of tests to try to answer his questions. He was the doctor that said “Addison’s Disease.” I saw this doctor all through college, even though my college was several states away. During my junior year of college, I started struggling more with my health. I was also reaching the limits of his medical training. He openly admitted that he had never met an Addisonian patient like me. First time I heard that, I thought, “Oh great. I’m one screwed up failure.” I realize now that is not what he meant. I genuinely puzzled him. What he studied in school did not match up with what he saw in my life. He recommended I find a third endo in the same state as me who could keep a better eye on me. I did.

I saw her for several years. Then the week of April 14th of 2013, I just felt off. April 19th, 2013 was especially bad. I called her office asking her for advice. She ordered some blood work and said I should go in to see her that afternoon.

The appointment was a waste of time. She didn’t know what to do with me so she gave me a card for a primary care doctor down the street. I still felt beyond awful and was incredibly dizzy. At my mom’s prompting, I called the PCP to see how soon I could get an appointment. They could see me immediately.

In that PCP’s office was when I started slipping rapidly towards a crisis. I went from being confused and dizzy to seizing up and fading in and out of consciousness. The doctor had the wisdom to call an ambulance and rush me off to the ER. When I finally reached my third endo by phone, she had the audacity to tell me, “Amber, it’s impossible for you to go into a crisis. You took your medicine today. Are you sure it’s not depression?”

If you read my blog, it’s obvious that I’m not depressed. Addison’s disease does suck at times, but I write to remind myself about the Importance of Perception, and how I choose to be optimistic. I choose to fight for my health.

My whole goal is to be Clearly Alive!

The irony.

I immediately tried to find a fourth endo because my third endo lost my trust. Once again, this new endo did not have all my blood work. He never saw me pre-diagnosis, when I was chronically underweight, constantly sick, and tan year round regardless of time spent outside. He just saw a girl who had been on steroids since 2005.

He had the audacity to tell me that I never had Addison’s disease and none of my doctors believed I had Addison’s disease. I just suffered from anxiety and depression.

He did not know my story.

I went to my fifth endocrinologist this past Thursday. It’s a real pain to be missing that original blood work. The doctors don’t have my history. They just know the actions taken.

First endo said “Adrenal Insufficiency” and started me on hydrocortisone.

The second endo said “Addison’s Disease” and added fludrocortisone.

The third endo [wrongly] said “Depression” and the fourth endo [wrongly] said “Anxiety… And you never had Addison’s.”

The fifth endo said it didn’t matter the name. The fact remains that I’m on steroids now and I will be on steroids for life. The focus should be solely on improving my quality of life.

I have an interesting story. I’m not sure where my journey will lead or why I am gifted with this unique  path. I will continue to share my story with the hope that I can encourage others, and frankly, encourage myself. Now, there are still many unanswered questions. Why did I immediately vomit all of my night meds on May 5th? Why was I starting to slip into a crisis on April 19th? We are missing a piece of the story.

Here’s hoping we can find it quickly. Although still frustrated, at my core I am still Clearly Alive.

**UPDATE** After much hunting, my father was able to locate the copy of my original diagnosis papers. The numbers are there, however they only provide a brief snapshot, a discrete moment in time. We must consider the entire story.

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