Saturday, December 3, 2016

The Cortisol Pump: My Journey

Dear readers, I would like to explain more about my journey on the cortisol pump.

When I returned from Malaysia, I attempted to return to my Endo #6. While I was living abroad, she joined a practice with Endo #4, a doctor who did not play nice with me. When I arrived for my appointment with Endo #6, I learned that she had to unexpectedly quit practicing medicine due to a personal emergency. I would not be seeing her that day. It was likely that I would never see her again. To make matters worse, Endo #4 was covering all of her patients. He never saw me, but his Nurse Practitioner did. By a cruel twist of fate, my medical care was once again in the hands of Endo #4.

Endo #4 had improperly labeled me as a drug seeker in 2013 for attempting to discuss the pump with him. He was of the mindset that I should be able to take 30 mg of HC, once or twice a day, shut up, and be fine. Although he was supposedly a "Texas Super Doctor" very interested in research, he refused to consider any of the years of research put into this treatment method. Instead, he yelled at me on the phone calling me just some depressed girl addicted to steroid.

Two years later, his Nurse Practitioner scolded me on the phone for not seeking treatment from Endo #6 and the medical center she used to practice in. 

I told them I did seek treatment from Endo #6 and I was in her care for over a year. She switched practices while I was living abroad and I wanted to follow her to her new practice. That's how I unexpectedly ended up back under the "care" of Endo #4. I knew Endo #4 did not want to treat me. But what came next during that phone call with Endo #4's Nurse Practitioner caught me completely off guard.

Because I was on this pump for cortisol, I was forbidden from being seen by any of the nine endocrinologists in their practice. I was banished from an entire association of supposedly top rated endocrinologists because I sought a higher quality of life.

I was also back in America without a doctor while living with a chronic disease that quickly becomes life threatening without treatment. 

After another panic attack triggered by Endo #4, I humbly called the practice of Endo #5 asking her to take me again as a patient. I wanted to return to someone who already knew me rather than attempting to hunt for Endo #8. Endo #5 was very familiar with pumps for diabetes, however the concept of it for Adrenal Insufficiency made her nervous. With each appointment, I built a bit more trust with her. She never banished me and when I went to say goodbye because I was moving, she hugged me and told me how well I was doing.

I hope y'all understand why many of us on the cortisol pump are hesitant to share the names of doctors we've encountered during our individual journeys. Many of us have faced backlash from our medical providers, or the doctors themselves are nervous about backlash against them.

We are willing to encourage. We are willing to speak on the benefits and draw backs of this method of treatment. We are willing to let you know that you are not alone in your journey.

However, we are not always willing to give out individual doctor recommendations.

You must find the open door yourself, within your own medical providers. Just know that you will have us in your corner supporting and encouraging you along the way.

I got a new pump!
Medtronics finally offered us something waterproof.
Even this was a very emotionally draining and spoon intensive battle.

4 comments:

  1. Thanks for posting this, I am so interested in moving onto the pump, and knew there were difficulties. But I had no idea of the magnitude of the battle you face. Your honesty and willingness to share the challenges with the rest of us is inspiring.

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  2. Thanks, Amber. I've been wondering why there are hesitancies. I'm eager to get a pump, but don't even know how to begin the process. I see how you got your pump, but am wondering how others have gotten theirs from American doctors. I even read about somebody in Europe who wants to come to America because she thinks it would be easier to get one here. Typically, I don't feel well enough to take on the medical establishment. But, do you think we could put together some kind of a petition to present to the FDA?

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    1. Hi Debbie,

      Sadly I don't think an FDA petition is going to do much. There are trials going on, but it takes quite a while before that propagates to the general population.

      You just have to find a doctor willing to learn with you and try it. And I know that's hard and might seem impossible, but sometimes doors open up in the most unexpected ways.

      ~ Amber

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