Day Fifteen, Cushing’s Awareness Challenge

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 did 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 verse 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 verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever.

This verse 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. On my birthday, there was “my” psalm so I had to buy this book!

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.

 

I 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.

On the other side there is an article I found after my kidney cancer.  You can read that article in Day Twenty-nine, coming up on April 29, 2012.  Plan Ahead!

Other Diseases

Many of the people who post on the message boards suffer from other diseases, as well as Cushing’s. These links help to provide some information about these diseases.

~A ~

Acanthosis nigricans
This Topic on the Message Boards.

Acromegaly
This Topic on the Message Boards.

Addison’s Disease
This Topic on the Message Boards.

Adrenoleukodystrophy
This Topic on the Message Boards.


~B ~

Barrett’s esophagus


~C ~

Carney Complex
This Topic on the Message Boards.

Central Serous Retinopathy
This Topic on the Message Boards.

Congenital Adrenal Hyperplasia (CAH)
This Topic on the Message Boards.

Conn’s Syndrome
This Topic on the Message Boards.

Craniopharyngioma
This Topic on the Message Boards.


~D ~

Diabetes insipidus
This Topic on the Message Boards.


~E ~

Ectopic ACTH Syndrome
This Topic on the Message Boards.

Empty Sella
This Topic on the Message Boards.


~F ~

Fibromyalgia
This Topic on the Message Boards.


~G ~

Gigantism
This Topic on the Message Boards.

Growth Hormone (hGH)
This Topic on the Message Boards
.


~H ~

Hirsuitism
This Topic on the Message Boards.

Hyperprolactinemia
This Topic on the Message Boards.

Hyperthyroidism
This Topic on the Message Boards.

Hypoalderostonism
This Topic on the Message Boards.

Hypocalcemia
This Topic on the Message Boards

Hypopituitarism
This Topic on the Message Boards.

Hypothyroidism
This Topic on the Message Boards.


~I ~

Insulin Resistance
This Topic on the Message Boards.


~K ~

Kidney Disease
This Topic on the Message Boards.


~L ~

Lyme Disease
This Topic on the Message Boards.


~M ~

Madelung’s Disease
This Topic on the Message Boards.

Menopause
This Topic on the Message Boards.

MEN Type 1
This Topic on the Message Boards.

Myasthenia Gravis
This Topic on the Message Boards.


~N ~

Nelson’s Syndrome
This Topic on the Message Boards.


~O ~

Osteopenia
This Topic on the Message Boards.

Osteoporosis
This Topic on the Message Boards.


~P ~

Panhypopituitarism
This Topic on the Message Boards.

PCOS
This Topic on the Message Boards.

Perimenopause
This Topic on the Message Boards.

Pheochromocytoma
This Topic on the Message Boards.

Pituitary dwarfism
This Topic on the Message Boards.

Premature menopause
This Topic on the Message Boards.

Primary pigmented nodular adrenocortical disease (PPNAD)
This topic on the Message Boards

Prolactinoma
This Topic on the Message Boards.

Pseudo Cushing’s
This Topic on the Message Boards


~R ~

Rathke’s cleft cyst
This Topic on the Message Boards.

ROHHAD (Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood)
This Topic on the Message Boards


~S ~

Sheehan’s Syndrome
This Topic on the Message Boards.

Stein-Leventhal Syndrome
This Topic on the Message Boards.


~T ~

Thymoma
This Topic on the Message Boards.

Thyroid Gland Disorders
This Topic on the Message Boards.

Turner’s Syndrome
This Topic on the Message Boards.


~V ~

Von Hippel-Lindau disease
This Topic on the Message Boards.


~Z ~

Zollinger-Ellison Syndrome

Cushing’s FAQ

A FAQ (Frequently Asked Questions).  Directions are in each category for adding your own question.

IMPORTANT: The information and material posted on this Web site is intended as general reference information only. Specific facts and circumstances may alter the concepts and applications of materials and information described herein. The information provided is not a substitute for professional advice and should not be relied upon in the absence of such professional advice specific to whatever facts and circumstances are presented in any given situation.

Please note that there are several questions waiting to be answered at this time. Your question will be answered as soon as possible.

This is a different website than the message boards and requires a different log-in, although you may use the same log-in name and password.

 

Adrenal Insufficiency

Adrenal insufficiency is a life threatening chronic illness. An active and vigorous lifestyle with normal life expectancy is possible as long as the prescribed medications are taken regularly and adjusted when indicated. As with most chronic diseases, adrenal insufficiency demands that the patients take responsibility and develop self-management skills and techniques.

Read an article on Adrenal insufficiency

Cushing’s Types

Cushing’s Disease/ Cushing’s Syndrome: Cushing’s is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Your adrenal glands, which are right above your kidneys, release cortisol when they receive a chemical message from your pituitary gland. The message comes in the form of adrenocorticotrophic hormone (ACTH), which travels through the bloodstream.

Cushing’s Disease Is the result of a pituitary tumor which causesthe emergence of secondary male characteristics (like hair growth, acne, etc.), and ovarian failure. Other symptoms usually include high blood pressure and water retention.

Cushing’s Syndrome: Causes the same symptoms, but is a disorder marked by overproduction of adrenal hormones, which can cause a drop in LH and FSH.

An estimated 10 to 15 of every million people are affected each year. Cushing’s is an increased concentration of glucocorticoid hormone (ACTH) in the bloodstream that is being produced by an adrenal gland tumor (adenoma). Ectopic Cushing syndrome refers to the production of ACTH in a location other than the pituitary gland or adrenalgland. Examples of ectopic sites include thymoma, medullary carcinoma of the thyroid, pheochromocytoma, islet cell tumors of the pancreas, and oat cell carcinoma of the lung.Symptoms include weight gain, central obesity, moon face, weakness, fatigue, backache, headache, increased thirst, increased urination, impotence, mental status changes, and muscle atrophy.

Treatment varies with cause. If an ACTH secreting tumor is involved then it must be removed surgically.

More about Cushing’s.

Talk about Cushing’s with people who understand.

Subcategories:

Growth Hormone

Human Growth Hormone (hGH) is produced in the pituitary gland of humans, and the hormone is secreted throughout a person’s lifetime. It promotes growth in children and plays an important role in adult metabolism.

More about HgH

Where Can I Find…?

Is Cushing’s really that rare? Or is it simply undiagnosed?

Here are some thoughts from the Cushing’s Help message boards over the years.

  • Is this really such a rare disease, or more of a rare diagnosis? I mean, I remember when Thyroid issues were taboo and non-existant to regular docs, but now they all see to know something and are recognizing the issues…Seriously, if only 10-15 in every million have Cushings, how on earth did a well visited forum get created???
  • My personal opinion is a rare diagnosis….I see people with acne covered red moon faces, frontal obesity and a hump and just shake my head. If I can talk to them I will mention it but I am super sensitive about my weight and don’t want to insult anyone.
  • I believe it is both. The disease itself is rare, but more and more people are coming forward. I don’t think it is as rare as they think it is in research. It is also rare to find an educated physician for this disease. They are out there, but why aren’t there more? This makes for rare diagnosis. It is not like I can walk down the street and see tons of people with cushings symptoms, but now that I am aware of it I DO see some.
  • i believe until it is not so underdiagnosed we will never know if it is actually rare.
  • I don’t think it’s as rare as doctors think it is. I think the problem is they send people out based on individual symptoms versus looking at them all as a package. For example I got sent to: a psychiatrist for depression, a gastroenterologist for stomach stuff (diarrhea and constipation), an endocrinologist for the hormone/insulin issues, a neurologist for the headaches, an OB/GYN for the “missed periods” and an opthamologist for the vision issues. None of them talk to each other and none of them work together. How could they make a diagnosis of anything other than their specialty based on that? I think until docs take a team approach, it won’t be diagnosed more.
  • We all tend to think it is rarely diagnosed, more than it being a rare disease. Then, you get into the whole idea of, what causes it anyway?

    Who knows? Nobody knows for sure, but say it is from our environmental issues. Maybe it’s from chemicals we are exposed to, and this is how our bodies react. Then if it is environmental, you will start to see more and more people with it because more and more people are exposed to the same environmental issues. Maybe the same thing causes cancer in some people, and pituitary tumors in others. I’m not saying this is the case, I’m just throwing ideas out there. You didn’t hear of Chronic Fatigue and Fibromyalgia 30 yrs. ago either. Maybe in another 30 yrs., Cushing’s will be a disease that most people know about. That would mean more people getting diagnosed, and it would seem that Cushing’s would be on the rise, but awareness is probably the key.

  • What do YOU think?

Interview with MaryO

Listen to CushingsHelp on internet talk radio

The Call-In number for questions or comments is (646) 200-0162.

Cushing’s Help Founder, MaryO

MaryO“MaryO”, Mary O’Connor is the founder and webmaster for Cushings-Help.com and related sites. She is also a Piano Teacher and web designer in northern Virginia. She started having Cushing’s symptoms in early 1983 and finally had pituitary surgery at the NIH in November, 1987, Mary is a 25+ year survivor of Cushing’s Disease.

Due to her Cushing’s experiences and the lack of websites for people with Cushing’s, Mary founded the Cushings-Help website in 2000 to help others who were dealing with the rigors of testing and surgery.

MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing’s. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment.

Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also.

She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing’s Awareness events. She is married to Tom and has a grown son, Michael.

Intro: Hello, I have with us today Mary O’Connor, founder of the cushings dash help dot com website. Mary is a 20 plus year survivor of Cushing’s Disease. For those who do not know what Cushing’s Disease is, you may want to peruse the Cushings-help website. Briefly, it is an endocrine-related disease caused by a pituitary tumor (also called an adenoma) which causes life-threatening symptoms. Cushing’s Syndrome is a similar disease caused by an adrenal or other tumor.

MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing’s. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment. She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing’s Awareness events. She is married to Tom and has a grown son, Michael.

Mary, I know the listeners would love to hear your story. What can you tell us about your symptoms, diagnosis, and treatment with Cushing’s?

Other Topics Discussed:

  • Why did you decide to start the cushings-help website?
  • What are some of the things that can be found on the site?
  • What are the message boards?
  • How many members are there on the boards?
  • How much work is involved in keeping up the site and the boards?
  • How are you doing now? What has happened since your surgery for Cushing’s?

Closing: As you can see, Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also. Please stay tuned for more stories from these survivors! For more information, visit the cushings-help website.

Keywords: adenoma, adrenal, arginine, arthritis, aspirin, awareness, cortef, cortisone, cortrosyn, Cushing’s, diagnosis, endocrine, energy, Forbes Magazine, gland, growth hormone, gym, insurance, kidney cancer, MaryO, menopause, migraine, nap, NIH, obesity, pituitary, Power Surge, rare, renal cell carcinoma, staticnrg, steroid, stimulation, support board, surgery, survivor, symptoms, thyroid, tired, transphenoidal hyposection, treatment, tumor, website, weight, Weight Watchers

Read Mary’s bio.
Listen to MaryO’s Archived Interview from January 3, 2008

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