MaryO

I was so very sorry to hear of Shianne’s passing last week. She was one of the reasons I continue to fight this demon of a disease.Being 100% honest here, these past 2 weeks have been the worst for me yet and I have contemplated on more than one night to just be done. But for some reason, Shianne’s death made me realize I need to honor her by fighting and hard!..

In the comments area at https://cushingsbios.com/2018/04/01/in-memory-shianne-lombard-treman-march-28-2018/

In Day 12 on April 12, 2017, I wrote about how we got the Cushing’s colors of blue and yellow.  This post is going to be about the first Cushing’s ribbons.
 

Read more at https://cushieblogger.com/2018/04/07/day-7-cushings-awareness-challenge-2018/

And now, lions can have Cushing's, too.  Add them to the dogs, horses, ferrets and other animals who generally are diagnosed faster than humans...

http://kfor.com/2018/04/05/oklahoma-city-zoo-officials-lioness-who-grew-small-mane-has-died/?utm_campaign=trueAnthem%3A+Trending+Content&utm_content=5ac698e104d301451151c081&utm_medium=trueAnthem&utm_source=facebook

Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be.  I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, starting all over again…and I’m traveling this weekend, which makes everything more hectic and tiring.

Read more at https://cushieblogger.com/2018/04/06/day-6-cushings-awareness-challenge-2018/

Robin had Cushing’s for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom Robin found in 2004 said “endocrine”. She didn’t figure it out, either, but at least Robin had a piece of the puzzle and Robin found www.cushings-help.com. Robin immediately went into denial and left for several months until Robin got so sick Robin knew she had to…

Read more at https://cushieblogger.com/2018/04/06/interview-archive-mary-oconnor-maryo-interviewed-robin-smith-staticnrg/

🎤 Interview Archive: Mary O’Connor (MaryO) interviewed Robin Smith (staticnrg) https://t.co/EDeS1KBGzP https://t.co/2WoIv6DxbP

Myth: YOU are the problem and the reason for your cortisol levels. Having issues with too much or too little cortisol, the stress hormone, means that YOU are stressing too much or are too anxious. “YOU could control your levels if you would JUST calm down!”

Read the response at https://cushieblogger.com/2018/04/06/myths-and-facts-about-cushings-you-are-the-problem-and-the-reason/

Interview with Alicia, a Cushing’s Message Board member who is still testing. Alicia writes “Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a “students in crisis” plan and sent home for a little while. Being diagnosed as a “psych patient” would delay my diagnosis for years, most doctors just considered me “crazy.”

Read more at https://cushieblogger.com/2018/04/05/interview-archive-with-alicia-a-patient-who-is-still-testing/

Social media dominates most people's lives these days. You see what everyone you know is up to, but the problem is, most people only post about the highlights of their lives.

You don't get to see the low points, the every day struggles. You don't see what keeps them up at night with worry...

Read more at https://cushieblogger.com/2018/04/05/from-a-past-blogging-challenge-cushings-awareness-challenge-day-5/

In 2006, I flew to Chicago, IL for a Cushing's weekend in Rockford.  Someone else drove us to Lake Geneva, Wisconsin for the day.  Too much travel, too Cushie, whatever, I was too tired to stay awake.  I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead.  Amazing that I traveled that whole distance – and missed the main event😦

Read more at https://cushieblogger.com/2018/04/05/day-5-cushings-awareness-challenge-2018/

🦓 From a Past Blogging Challenge: Cushing’s Awareness Challenge – Day 5 https://t.co/Egu3Kkh0jX

Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”

Read more at https://cushieblogger.com/2018/04/04/myths-and-facts-about-cushings-cushings-is-rare-no-one-has-cushings/

...What I kept thinking was how much http://cushings-help.com was what got me through, all the information and the support from forum members kept me going. I was going to send you a message to thank you but decided it needed to be said publicly. Thank you so much, you saved my family.

Read more at https://cushieblogger.com/testimonial/judy-k-2/

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?...

Read more at https://cushieblogger.com/2018/04/04/from-a-past-blogging-challenge-cushings-awareness-challenge-day-4/

Mary O’Connor (MaryO) hosted an interview with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s.

Read more at https://cushieblogger.com/2018/04/04/interview-archive-with-jayne-ectopic-cushings-patient/

“We are pursuing a drug that has a very real potential to become the optimal agent of choice and a standard of care for these Cushing’s patients,” said Manohar Katakam Ph. D., CEO of SteroTherapeutics. "Our clinical trial will target multiple critical metabolic-related outcomes including the reduction of triglycerides, insulin resistance, weight loss, and the prevention and/or abrogation of hepatic steatosis and fibrosis.”

Read more at https://cushieblog.com/2018/04/04/sterotherapeutics-receives-fda-orphan-drug-designation/

Paraneoplastic esthesioneuroblastoma (ENB), a very rare type of nasal tumor, may sometimes produce excess adrenocorticotrophic hormone (ACTH), leading to symptoms of Cushing’s syndrome.

Read more at https://cushieblog.com/2018/04/04/rare-nasal-cancer-may-have-caused-cushings-syndrome/

Stuart is from Brisbane, Australia  His daughter's  chronic weight gain plus all the other acute symptoms ruin her life, and chip away at her once-immense self-esteem.

Read more at https://cushingsbios.com/2018/04/04/stuart-m-parent-of-a-teenager/

For all of my early life, I was the good, compliant, patient.  I took whatever pills the doctor prescribed, did whatever tests h/she (most always a he) wrote for.  Believed that whatever he said was the absolute truth.  He had been to med school.  He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.

https://cushieblogger.com/2018/04/04/day-4-cushings-awareness-challenge-2018/

Dr. Karen Thames shared these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and in the CushieWiki and on the Cushing’s Help message boards.

Read more at https://cushieblogger.com/2018/04/03/myths-and-facts-about-cushings/

One of my least favorite things about my life with chronic illness is having imaging appointments.  Whether it's my… https://t.co/nySbvkV4Fg

One of my least favorite things about my life with chronic illness is having imaging appointments.  Whether it's my yearly brain MRI, or a chest X-ray, the whole process is uncomfortable, and sometimes even painful...

Read more at https://cushieblogger.com/2018/04/03/from-a-past-blogging-challenge-cushings-awareness-challenge-day-3/

Interview with Judy, the mother of two Cushing’s patients, and her daughter, Jess, a high school student with Cushing’s. Robin (staticnrg) hosted.

Read more at https://cushieblogger.com/2018/04/03/interview-archive-with-judy-mom-to-2-cushings-patients-and-her-daughter-jess/

Sleep, the Goldilocks and the three bears of Cushing’s Disease

Insomnia was one of the first things that troubled me enough to try to get help for with Cushing’s Disease. By my last year in music school, I had flipped my schedule around. I felt best and got more done if I practiced through the night and slept through the day...

Read more at https://cushieblogger.com/2018/04/03/from-a-past-blogging-challenge-sleep-the-goldilocks-and-the-three-bears-of-cushings-disease/

If you believe you have Cushing's (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.  Make a calendar showing which days you had what symptoms.  Google calendars are great for this.

Read more at https://cushieblogger.com/2018/04/03/day-3-cushings-awareness-challenge-2018/