🦓 Day 26, Cushing’s Awareness Challenge

April 26, 2026April 6, 2026 MaryO Cushing's Awareness Challenge alone, clinical trial, Cushing’s, diagnosis, Internet, Ladies Home Journal, library, MaryO, NIH, pre-internet, research

So often during the diagnosis phase of Cushing’s I felt lost like this picture – I was walking alone to an unknown place with an unknown future.

My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors. In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends. My first hope was from a magazine (see Day Six)

After I got that first glimmer of hope, it was off to the library to try to understand medical texts. I would pick out words I did understand – and it was more words each trip. I made Xerox copies of my findings to read at home and try to digest. (I still have all those old pages!)

All my research led me to Cushing’s.

Unfortunately, the research didn’t lead me to doctors who could help for several years. That contributed greatly to the loneliness. If a doctor says you’re not sick, friends and family are going to believe the doctor, not you. After all, he’s the one trained to know what’s wrong or find out.

I was so grateful when I finally got into a clinical trial at NIH and was so nice not to be alone with this mystery illness. I was also surprised to learn, awful as I felt, there were Cushies much worse off than I was.

I am so glad that the Internet is here now helping us all know that we’re not alone anymore.

We’re all in this together with help, support, research, just being there. I love this quote from Catherine at http://wheniwasyou.wordpress.com/2012/03/31/wheniwasyou/

Mary, I am delighted to see you here. Cushings – because of the persistent central obesity caused by (we know now) the lack of growth hormone plus the hypothyroidism I was diagnosed with (but for which treatment was ineffective due to my lack of cortisol) – was one of the things I considered as an explanation for my symptoms. Your site was enormously educational and helpful to me in figuring out what might be happening to me. Those other patient testimonies I referred to? Many of them were the bios you posted. Thank you so much for commenting. I am so grateful for the support and encouragement. I really hope that my experiences will help other undiagnosed hypopituitary patients find their way to a diagnosis. I often used to dream that one day I’d get to say to others what was so often said to me: don’t give up, there will be an answer. I kept believing in myself because people I hadn’t even met believed in me. Now I am finally here and I do hope my story will help others to have faith in their own instincts.

Thanks again. Please do keep in touch.

Catherine

🦓 Day 20, Cushing’s Awareness Challenge

April 20, 2026April 6, 2026 MaryO Cushing's Awareness Challenge church, Cushing’s, diagnosis, Easter, MaryO, message boards, NIH, post-op, Psalm 116, religious, scripture reading, sermon, Sunday, support board, surgery, transsphenoidal

Because it’s a Sunday again, this is a semi-religious post…

After I was finished with the Cushing’s long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who preached the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

I thought I had written down the scripture reading carefully. I practiced and practiced. I don’t like speaking in front of a crowd but I said I would. When I got to church, the reading was different from what I had practiced. Maybe I wrote it down wrong, maybe someone changed it. Whatever.

The real scripture turned out to be Psalm 116. I got very emotional while reading this and started crying when I got to verse 8 “For you, O LORD, have delivered my soul from death“. Others in the congregation who knew part of my story were very moved, too.

Psalm 116 (New International Version)

1 I love the LORD, for he heard my voice;
he heard my cry for mercy.

2 Because he turned his ear to me,
I will call on him as long as I live.

3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.

4 Then I called on the name of the LORD:
“O LORD, save me!”

5 The LORD is gracious and righteous;
our God is full of compassion.

6 The LORD protects the simplehearted;
when I was in great need, he saved me.

7 Be at rest once more, O my soul,
for the LORD has been good to you.

8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,

9 that I may walk before the LORD
in the land of the living.

10 I believed; therefore I said,
“I am greatly afflicted.”

11 And in my dismay I said,
“All men are liars.”

12 How can I repay the LORD
for all his goodness to me?

13 I will lift up the cup of salvation
and call on the name of the LORD.

14 I will fulfill my vows to the LORD
in the presence of all his people.

15 Precious in the sight of the LORD
is the death of his saints.

16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.

17 I will sacrifice a thank offering to you
and call on the name of the LORD.

18 I will fulfill my vows to the LORD
in the presence of all his people,

19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.

This Psalm has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. “My” psalm was listed as the reading for my birthday, so I had to buy this book! For a while, it was the license plate on my car.

I used to carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver but now I have this info on my phone and iPad.

On the other side there is an article I found after my kidney cancer. You can read that article in Fridays post.

🦓 Day 7: Cushing’s Awareness Challenge

April 7, 2026April 6, 2026 MaryO Cushing's Awareness Challenge balalaka, bills, blogs, Cancer, choir, diagnosis, handbell, hobbies, MaryOMedical, nap, part-time job, piano, website

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 my DH was diagnosed with cancer which makes everything more hectic and tiring.

It’s been like this since I was being diagnosed with Cushing’s in the mid-1980’s. You’d think things would be improved in the last 38 years. But, no.

My mind wants things to have improved, so I’ve taken on more challenges, and my Mom and DH have provided some for me (see one of my other blogs, MaryOMedical).

Thank goodness, I have only part-time jobs (5 0f them!), that I can mostly do from home. I don’t know how anyone post-Cushing’s could manage a full-time job!

I can see this post morphing into the topic “My Dream Day“…

I’d wake up refreshed and really awake at about 7:00AM and take the dog out for a brisk run.

Get home about 8:00AM and start on my website work.

Later in the morning, I’d get some bills paid – and there would be enough money to do so!

After lunch, out with the dog again, then practice the piano some, read a bit, finish up the website work, teach a few piano students, work on my church jobs, then dinner.

After dinner, check email, out with the dog, maybe handbell, balalaika or choir practice, a bit of TV, then bed about 10PM

Nothing fancy but NO NAPS. Work would be getting done, time for hobbies, 3 healthy meals.

Just a normal life that so many take for granted. Or, do they?

🦓 Day 5: Cushing’s Awareness Challenge

April 5, 2026April 6, 2026 MaryO Cushing's Awareness Challenge blood tests, CT scan, Cushing’s, diagnosis, MaryO, MRI, NIH, Petrosal Sinus Sampling, test

The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:

Egads! I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.

Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…

Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and speciality blood tests…

The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.

🦓 Day 1: Cushing’s Awareness Challenge

April 1, 2026April 6, 2026 MaryO Cushing's Awareness Challenge April Fool, awareness, bruise, diagnosis, doctors, Dr. Harvey Cushing, drug companies, endocrinologist, exercise, fatigue, hirsuitism, MRI, Pituitary, sleep, stretch marks, surgery, symptoms, transsphenoidal, treatment, tumor, Video, weight

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

Thanks to Robin for this wonderful past logo! I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year. More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

How fitting that this challenge should begin on April Fool’s Day. So much of Cushing’s Syndrome/Disease makes us Cushies seem like we’re the April Fool. Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it. April Fools!

All you have to do is exercise and diet. You’ll feel better. April Fools!

Those bruises on your legs? You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin. That happens as you age, you know. April Fools!

Did you say you sleep all day? You’re just lazy. If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks. April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor. You couldn’t have Cushing’s. April Fools!

This is all in your mind. Take this prescription for antidepressants and go home. April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What? You had transsphenoidal surgery for Cushing’s? You wasted your time and money. April Fools!

I am the doctor. I know everything. Do not try to find out any information online. You could not have Cushing’s. It’s too rare… April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

So now – who is the April Fool? It wasn’t me. Don’t let it be you, either!

📚 Surviving Cushing’s Disease: A Young Man’s Journey

April 14, 2025April 14, 2025 MaryO books Cushing's Disease, diagnosis, endocrinologist, male, nonfiction, Pituitary

This narrative nonfiction novel chronicles my son’s twenty-year journey to get his Cushing’s disease diagnosed—a journey that took far too long.

Throughout the book, I highlight opportunities for testing that could have been done according to endocrinologist guidelines.

The core message is clear: early diagnosis is crucial for people to live vibrant lives.

Read Surviving Cushing’s Disease: A Young Man’s Journey.

From the back cover: Dean’s health deteriorated slowly because of a tiny intruder in his brain. For years, the little beast caused subtle damage by sending harmful messages throughout his body. Salvation came on a winter morning when surgeons removed the culprit. Surgery corrected the problem, but the real battle is the long, grueling fight against the disease’s lingering effects.

Dean continues to fight for the quality of his life as his smile radiates the scars of his surviving spirit.

Join a Doctor of Pharmacy as he retrospectively reviews his son’s long and challenging journey to obtain a diagnosis of Gushing’s disease. This compelling narrative is framed against the backdrop of clinical guidelines developed by leading endocrinologists from the United States and the United Kingdom.

What Do You Think? Only One Urine Test for Cushing’s?

February 6, 2024February 4, 2024 MaryO What do you think? 24-hour urinary free cortisol, blood tests, cortisol, CT scan, diagnosis, MRI, obesity, urine test

I sure had way more than one urine test, and lots of blood and more but that was a long time ago. What are your thoughts on this?

Warning sign: Being very overweight can be a sign of Cushing’s syndrome, a hormonal disorder that is often caused by tumors of the pituitary gland. Image:

Being very overweight, having a moon face and a bull neck are signs of Cushing’s syndrome. It is caused by an excess of the hormone cortisol. Researchers from Giessen and Munich have taken advantage of this to make diagnosis easier.

A special form of obesity, Cushing’s syndrome, is now easier to diagnose. Researchers at the University of Giessen and the Ludwig Maximilian University of Munich have shown that this metabolic disease can be detected using a urine test.

Typically, people with Cushing’s syndrome are very overweight, have a noticeably round face and a bull neck. This is caused by an excess of the stress hormone cortisol, which belongs to the steroid group. The researchers examined urine from Cushing’s patients at the Munich University Hospital using gas chromatography and mass spectrometry. This made it possible to determine the hormone status that is characteristic of the disease. The urine test is simple and provides quick results. So far, several blood samples and sometimes even a hospital stay have been necessary to detect the syndrome.

From https://www.breakinglatest.news/health/cushings-syndrome-can-be-detected-with-a-urine-test/

🦓 Day 24, Cushing’s Awareness Challenge 2022

April 24, 2022April 23, 2022 MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge church, Cushing's Awareness Challenge 2022, Cushing’s, diagnosis, MaryO, message boards, NIH, post-op, Psalm 116, religious, scripture reading, sermon, Sunday, support board, surgery, transsphenoidal