🦓 Day 26, Cushing’s Awareness Challenge 2022

April 26, 2022April 22, 2022 MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge 2022 alone, clinical trial, Cushing's Awareness Challenge 2022, 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 24, Cushing’s Awareness Challenge 2022

April 24, 2022April 23, 2022 MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge 2022 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

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.

🎤 Archived Interview: Cushing’s Diagnosis and Symptoms, part 2

April 12, 2022April 11, 2022 MaryO Cushing's Awareness Challenge, Interviews, Meetings and Conferences Cushing’s Awareness Challenge 2021, diagnosis, Interview, symptoms

Listen as Robin Smith (staticnrg) and Mary O’Connor (MaryO) co-host Cushing’s message board members calling in to talk about their fight for diagnosis and treatment. The show will be opened with a brief explanation of what Cushing’s is and what the symptoms are.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/03/13/-cushings-diagnosis-and-symptoms-part-2

🦓 Day 9, Cushing’s Awareness Challenge 2022

April 9, 2022April 4, 2022 MaryO Cushing's Awareness Challenge bills, blogs, choir, Coronavirus, Cushing’s Awareness Challenge 2021, diagnosis, dog, 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 the coronavirus which makes everything more hectic, stressful 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 33 years. But, no.

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

Thank goodness, I have only part-time jobs (4 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 job, then dinner.

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

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

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

🦓 Day 6: Cushing’s Awareness Challenge 2022

April 6, 2022April 2, 2022 MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge 2022 blood tests, CT scan, Cushing's Awareness Challenge 2022, 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, apheresis (this was experimental at NIH) and specialty 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.

🎤 Archived Interview: Symptoms and Diagnosis: Cushing’s Message Board Members

April 2, 2022April 1, 2022 MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge 2022, Interviews, Meetings and Conferences Cushing's Awareness Challenge 2022, Cushing's Message Board Members, Cushing’s Help, diagnosis, message boards, symptoms

As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.

The series is still going on, so if you’d like to be a part of this, just let me know. You can fill out this form and check off that you want to do an interview – Add Your Bio

There are currently 89 interviews in our series. This is the second one:

Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/10/cushings-members

🦓 Day 1: Cushing’s Awareness Challenge 2022

April 1, 2022April 1, 2022 MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge 2022 April Fool, awareness, bruise, Cushing's Awareness Challenge 2022, 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!

🦓 Day 26, Cushing’s Awareness Challenge 2020

April 26, 2020April 25, 2020 MaryO Cushing's Awareness Challenge alone, clinical trial, Cushing’s, Cushing’s Awareness Challenge 2020, 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.

All my research led me to Cushing’s.

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 19, Cushing’s Awareness Challenge 2020

April 19, 2020April 24, 2020 MaryO Cushing's Awareness Challenge church, Cushing’s, Cushing’s Awareness Challenge 2020, diagnosis, MaryO, message boards, NIH, post-op, Psalm 116, religious, scripture reading, sermon, Sunday, support board, surgery, transsphenoidal