Friday, September 4, 2015

PNA: Cushing's at 16

Copyright Robin and Pituitary Network Association, 2015.
I am thankful to read a Cushing's article in the latest Pituitary Network Association's newsletter. Anything we do to put the word out about Cushing's is good.  I also want to thank high school senior Robin for sharing her story in the article Cushing's at 16.  Every story puts a face to this horrible disease. The photos featured really let you see how Cushing's can change a person's physical appearance.

"Cushing's definitely made me the person I am today, and even though the experience was terrible, I am proud of who I am now." ~ Robin, 18 years old

We all can learn a thing or two about strength from Robin!


I do wish that the PNA would have featured a story of someone who required multiple surgeries before getting better.  Highlighting patients who had one pituitary surgery and got their cure is not representative of the patients who experience Cushing's. I know far more people who required multiple surgeries than those who were cured by one.  In my post entitled Cushie Warriors, I begged those with a Cushie in their life to support them, as many of them required multiple surgeries and treatments and still may not have a cure. It seems odd when so much information is out there about how pituitary surgery cures a Cushie, and it was important to let the few that remain part of the Cushie's support system to know that their Cushie-who-can't-get-well is not the exception but the rule. When I collected that patient treatment information and posted over four years ago in April 2011, there were already 50 people on the list. Kinda high for a rare disease, right?  I have an updated list of Cushie Warriors that tops over 125. That sure is a lot of Cushies out there who are trying to get people to understand that we are really sick and we have to go through a lot of testing to be rediagnosed in order to have multiple surgeries. It would further understanding for the complexity of Cushing's treatment if a national organization like PNA could help us get those stories out.

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.