Sunday, May 19, 2013

The Importance of a Story

My family moved around quite a bit during my childhood. I used to 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. We 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 digitalized. 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 this year, I just felt off. April 19th 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 incredibly dizzy so I decided to call the PCP and 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 doesn't 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 has 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 does 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 said "Depression" and the fourth endo said "Anxiety... And you never had Addison's." The fifth endo said it didn't matter the name, Primary Adrenal Insufficiency, Secondary Adrenal Insufficiency. Fact is that I'm on steroids now and I will be on steroids for life. The focus is 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.

5 comments:

  1. Hi Amber, I've been reading your blog for a while. I'm so sorry, these past few weeks sound like they've been miserable for you. I'm always so interested to read your experiences since I was diagnosed with Adrenal Insufficiency a little over a year ago. My PCP was actually the one who diagnosed me, the Endo she referred me to just wasn't working out for me, so I found a new Endo and she is wonderful. I'm not sure but I think you and I may live in the same area. I'm in N.Dallas (Plano area) and my Endo is not too far away if you want a referral. She is an amazing dr, very willing to listen, wants thorough testing, and provides and explains results. She has given me SO MUCH hope! If you want to email me I can give you her info. laceyheadley (at) gmail (dot) com. Your experience with fainting and seizing and going into a crisis and not knowing why is something I fear for myself as well, I hope you are able to find out what caused it. Please update when you do.

    Lacey

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  2. Just found your blog from Dusty's site. I will continue reading. Just come off of 2 off weeks myself with Addison's and found myself drawn to the support that others with Addison's can offer. Please keep writing - Jade

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    1. Thank you Jade :)
      And welcome!

      ~Amber

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  3. Amber I just began to read your blog today 12/5/13. I am wonder if since this post you have found some help? I ask as I have had Addison's for about 10 years now. Do you not have an injectable steroid at home for when you can not keep down your oral medication? I do and as an AD patient I have to have one on me at all times, along with a medical alert bracelet/necklace. Also keep looking for a endo you can trust. It's just like us going on a job interview, I have learned thru my years with the illness that you must "take charge" in a way and have a doctor that you can do that with. I to have had doctors look right at me and say well "They didn't teach us this one" or "Your case is not text book" and "Well, your one in a million" HA! Oh and too a good internal medicine doctor is best not just a family and/or general doctor. I just began to read your blog, I will continue! You've brought me to tears and hit so many of the feelings I have had over the years.
    Amber, Thank you... I don't think you will ever know what your words and sharing your story has done for me and will continue to do for me. My mom has said and felt so many of the things your mom has! I say all the time that my mom was and still is my voice when I feel lets say "fuzzy."
    Please keep going no matter how hard because I'm going to keep reading and again thank you.

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    1. Welcome to my blog :)

      Since I have posted this, yes I have found help. Endo #5 made it her mission to get me into one of the best endocrinologists in the country. I'm now on Endo #6 and she is absolutely amazing! I've also found a much better way to introduce myself to doctors. After seeing 14 different specialists between my crisis in April and wrapping things up in September, this speech is well practiced! I've learned to now warn them that I am an engineer. I do not have a medical background but the only thing I do all day long is look at data to draw conclusions to the true root cause. I apply the exact same problem solving skills to my own body. Are they willing to partner with me?

      Endo #4 was not. Endo #6 is. I had to wait until August to get into Endo #6, but I finally feel as if I am in good hands. And that is exciting for me :)

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