Friday, September 4, 2015

Feel like talking and typing

It's been a long time since I felt up to updating. It's been on my mind lately, so I decided to pop in and say hi. I hope to find the energy to reorganize this blog and add lots of content.  Living with a chronic disease like Cushing's and now Addison's, cortisol is always on my mind.

I want to encourage anyone who wants to contact me to please do so!  

I continue to get emails from Cushies all over the world who are wondering if they too could have this strange disease that no one thinks they actually have. 

On the one hand, I am elated to know that my work over the last 8.5 years is still out here in cyberspace helping someone when they need answers. That part makes me smile. It is imperative in my heart and mind to give back to the Cushing's community in a sort of Pay It Forward that once you experience it, you understand. I got to where I am today by standing on the shoulders of all the Cushies before and along side of me.

You are a doctor. Have a heart.
On the other hand, it saddens me deeply to see that doctors and endocrinologists are still so behind the times.  I see patients being told the same nonsensical, knee-jerk things that I was told. So many patients are going through the same naysaying doctors that I did all that time ago. Why must there be so much suffering? 

In all the ways that we have made progress with educating patients about high cortisol, we still have failed miserably in protecting patients from doctors who don't know better, who haven't read the medical research, who won't stop for one moment to exhibit an ounce of medical curiosity that each patient deserves. While I understand that doctors see common ailments frequently, it should not short circuit their brains into a loop that never deviates from their every day practice in order to dig deeper for the endocrine patients who need more from them.

It's not our fault we are so extraordinary!

How are we gonna get the word out to these doctors? When will they start listening to patients who know their own bodies? When will doctors come to love the internet for all the ways we have embraced it in every other corner of their lives? Patients report to their doctors with information in hand, looking for it to be confirmed or ruled out. We are not asking for the entirety of our selves and lives to be ridiculed, nullified, humiliated, and dismissed. 

I call on all doctors and endocrinologists to lean in order to learn more about the less commonly seen endocrine diseases such as Cushing's and Addison's.

Let's put aside this notion that Cushing's is too rare to have. Listen. All diseases have at least one patient or there wouldn't be a disease, now would it? Rare or not, it is not the doctor's job to rule it out based on possibility alone, as they think it is impossible to have Cushing's. Doctors must rule it out with tests and imaging as well as concern and compassion. If we can add the later to the patient experience, we would all be much better off.