🦓 Day 14: Cushing’s Awareness Challenge 2018

The Seven Dwarves of Cushing's

So, the dwarves above have only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.

Here are some of the many areas affected.

  • Progressive obesity and skin changes
  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
  • Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

Women with Cushing’s syndrome may experience:

  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

  • Decreased libido
  • Decreased fertility
  • Erectile dysfunction

Other signs and symptoms include:

  • Fatigue
  • Muscle weakness
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Cognitive difficulties
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • Hyperlipidemia (elevated lipids – cholesterol – in the bloodstream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!

MaryO
         MaryO

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

 

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

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⁉️ Myths and Facts about Cushing’s: Cushing’s Syndrome/Disease can be healed or cured

Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.

myth-busted

Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.

Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.

The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.

Day 5: Cushing’s Awareness Challenge 2018

 

Sleep.  Naps.  Fatigue, Exhaustion.  I still have them all.  I wrote on my bio in 1987 after my pituitary surgery “I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.”

That seems to be changing back, at least on the weekends.  A recent weekend, both days, I took 7-hour naps each day and I still woke up tired. That’s awfully close to taking a whole day off to sleep again.

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 😦

Sleeping in Rockford

This sleeping thing really impacts my life.  Between piano lessons, I take a nap.  I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps.  I nod off at night during TV. One time I came home between church services and missed the third service because I fell asleep.

I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.

At the beginning of last year, I was doing physical therapy twice a week for 2 hours at a time for a knee injury (read more about that in Bees Knees).  I come home from that exhausted – and in more pain than I went.  I know it worked some and my knee is getting better, but it’s such a time and energy sapper.  Neither of which I can really spare.

Now that I’m nearly 12  years out from my kidney cancer (May 9, 2006) I have gone back on Growth Hormone again.  My kidney surgeon says he “thinks” it’s ok.  I’ve asked my endo about it and he finally gave it an ok last summer.  Considering the GH wasn’t supposed to contribute to my cancer, it’s interesting that these doctors prefer me not to be on it.  I want to feel better and get the benefits of the GH again but I don’t want any type of cancer again and I certainly can’t afford to lose another kidney.

I’m not sure how long I will stay on the Gh this time since I have a very high co-pay and I’m not seeing any benefit.

I’ll probably just muddle through without it.  I always laugh when I see that commercial online for something called Serovital.  I saw it in Costco the other day and it mentions pituitary right on the package.  I wish I could take the people buying this, sit them down and tell them not to mess with their pituitary glands.  But I won’t.  I’ll take a nap instead because I’m feeling so old and weary today, and yesterday.

And tomorrow…

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

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

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🦓 Day 1: Cushing’s Awareness Challenge 2018

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

30-posts

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.


April Fool's Day

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!

📞 Webinar: Delays in Diagnosis of Pituitary Tumors: Why They Happen and Steps to Prevent Them

Presented by

Kenneth M. De Los Reyes MD, MSc
Assistant Professor
Co-director of Skull Base Surgery
Director of Quality Assurance
Department of Neurosurgery
Loma Linda University Medical Center

Register Now!

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: Wednesday, December 13, 2017
Time: 10:00 AM – 11:00 AM Pacific Standard Time 1:00 PM – 2:00 PM Eastern Standard Time

Webinar Description

Learning Objectives:

Building Patient and Medical Provider Awareness

  1. To build awareness among patients and medical providers of early signs and symptoms of pituitary and pituitary related tumors
  2. To understand the consequences of delays in diagnosis of pituitary tumors
  3. To outline steps for patients and medical providers to take to prevent delays in diagnosis of pituitary tumors.