Wednesday, April 28, 2021

First Surgery after Bilateral Adrenalectomy

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Surgery is a big deal with no adrenal glands. All that cutting into skin and stuff is stressful to the body. With no adrenals to increase co...
Wednesday, March 17, 2021

Uncured Cushies and Extra-Pituitary Tumors

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extra- 1. a prefix meaning "outside," "beyond," freely used as an English formative:  extrajudicial; extraterritorial; e...
Tuesday, November 17, 2020

Will You Try Amazon Pharmacy?

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"Amazon Prime members have access to an additional pharmacy perk called the "prescription savings benefit," which offers a di...
Friday, November 13, 2020

COVID Care + AIU SURVEY for Post Op Cushies

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Hello dear Cushie friends.  I hope all y'all are staying safe and hunkering down in Month 8 of the COVID-19 pandemic. We must be so care...
Tuesday, October 27, 2020

COVID-19 and AI Patients

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COVID-19 Information for Adults & Children with Adrenal Insufficiency 🆘Give to all emergency and hospital personnel 🆘 #covid #ER #Aand...
Sunday, October 25, 2020

Cushing’s and Bilateral Adrenal Tumors

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This post is for those with nodules on both adrenal glands, and the endo/ surgeon wants to remove one first to see how it goes. Before you a...
Sunday, March 1, 2020

🧬 GENE THAT METABOLIZES CORTISOL

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I tried many cortisol replacements in the first five years post op bilateral adrenalectomy (BLA) — hydrocortisone, prednisone, dexamethasone...
Tuesday, February 18, 2020

article: 2013 v. 2017 adrenal crises

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A retrospective analysis of adrenal crisis in steroid-dependent patients: causes, frequency and outcomes .  2019 article Although we s...
Thursday, February 13, 2020

Get Connected: Facebook groups

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Fighting Cushing's with moxie is difficult. We have to surround ourselves with people who know what it's like and how to help us. ...
Thursday, September 5, 2019

Brain holds A.M. meeting

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I wanted to share a cute video from Juggling the Jenkins about what would happen if our brain held a morning meeting to prepare us for the d...

Twelve year old with Cushing’s

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Twelve year old Juliana says moving to Alabama saved her life, as doctors finally diagnosed her with Cushing's after five years of sympt...
Monday, May 13, 2019

How Good is Your Safety Net: Join your Local Cushie Group

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Having Cushing's often feels like we are free-falling. Join your local Cushing's group and grab an arm or leg. Hang on forever. ...
Saturday, April 27, 2019

Stanford research develops cortisol meter for sweat

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Such an invention would simplify testing, diagnosis, and post op care for Cushing's patients. What a world it would be if there was no m...
Friday, January 4, 2019

Fludrocortisone shortage

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Today I share with you the January 4, 2019 notice from National Adrenal Disease Foundation. It provided an update for the ongoing fludrocort...
Thursday, January 3, 2019

Getting your Cortisol Dosage Right

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Doctors generally scare patients from taking extra cortisol (ie updosing or stress dosing) after pit surgery, adrenal surgery, or removing b...
Sunday, December 2, 2018

Patient Portals

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Back in my day, when I was first testing for Cushing's in 2007, there were no online patient portals. It would take two to three weeks f...
Tuesday, October 23, 2018

Insurance Inspection: It's Open Enrollment Time

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Today, I share with you some wise words from a post op Cushie and patient advocate, Susan G. She moderates the Facebook group, The Many Fac...
Friday, July 13, 2018

Guilt. Pain. Depression.

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I sit on my back porch staring at the flower across the yard. I hear the birds sing in the distance. I hear my service dog's nails h...