Year: 2026

🦓 From a Past Blogging Challenge: Cushing’s Awareness Challenge ~ Danielle, Day 4

MaryO Cushing's Awareness Challenge, Other Bloggers

From Danielle’s Blog:  http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-4.html

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?

It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was. I wouldn’t be questioned by my boss when I called in sick. My friends and family would be more supportive. My doctors wouldn’t question my symptoms.

Maybe my life would be easier.

Read the rest of the post at http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-4.html

🦓 Day 4, Cushing’s Awareness Challenge

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This is one of the suggestions from the Cushing’s Awareness Challenge post:

“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”

Our “Official mascot” is the zebra.

Our mascot
Our mascot

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.

According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism ‘When you hear hoofbeats behind you, don’t expect to see a zebra’, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse.

zebra-mug
A zebra cup my DH bought me 🙂

By 1960, the aphorism was widely known in medical circles.”

Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist!  Cushing’s is too rare – you couldn’t possible have that.  Well… rare means some people get it.  Why couldn’t it be me?

Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots.

I posted this in 2010 in 40 Days of Thankfulness: Days Twenty-Two through Thirty

I have a special affinity for rainbows. To me, a rainbow is a sign that things are going to be ok.

Years ago, our little family was in Florida. I felt guilty about going because my dad was terminally ill with his second bout of colon cancer. I was worried about him and said a little prayer for him.

I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow. It was a perfectly clear, sunny afternoon. I even called the people out of the water, in case it was something I wanted to see that didn’t really exist. They saw it, too.

Where in the world did that rainbow come from, if it wasn’t a sign that everything would be ok?

Butterflies are something else again.  I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a big easier on the eye.

My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds.

From July, 2008

For as long as I can remember, I’ve loved butterflies for their beauty and what they stood for. I’ve always wanted to shed my cocoon and become someone else, someone beautiful, graceful.

One of my first memories as a kid was knocking on the back door of my house and when my mom answered, I’d pretend to somehow be an orphan, looking for some kind person to take me in. And I would try to be that different child, with new habits, in the hopes that my parents would somehow think better of me, love me more as this poor homeless kid than they did as their own.

The butterfly was trying to emerge but it never got too far. Somehow, I would slip into my original self and be a bother to my parents.

Hope springs eternal, though!

🦓 From a Past Blogging Challenge: Cushing’s Awareness Challenge – Danielle, Day 3

MaryO Cushing's Awareness Challenge, Other Bloggers

From Danielle’s Blog http://www.lifewithcushings.com/2017/04/cushings-awareness-challenge-day-3.html

 

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.

Usually, when a physician wants me to have imaging, they will schedule an appointment, usually the soonest available is a week or two out, sometimes more depending on the test. You usually have to arrive at the hospital 15-30 minutes before your scheduled appointment time, on top of that, there is typically a wait…

🦓 Day 3: Cushing’s Awareness Challenge

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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 🙁

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.

A few years ago 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 when I went.  I knew it was working and my knee got better for a while, but it’s such a time and energy sapper.  Neither of which I can really spare.

Maybe now that I’m nearly 19  years out from my kidney cancer (May 9, 2006) I’ve been back on Growth Hormone again.  My surgeon says he “thought” it’s ok.  I was sort of afraid to ask my endo about it, though but he gave me the go-ahead.  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 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.

Eventually, I did restart the GH, this time Omnitrope.

And tomorrow…

🦓 Day 2, Cushing’s Awareness Challenge

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The Seven Dwarves of Cushing's

So, these are 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 blood stream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!


         

🦓 Day 1: Cushing’s Awareness Challenge

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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!

📅 Rare Disease Day

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rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

Talking to anyone who will listen about Cushing’s.  I was delighted recently to meet a non-endo doctor at a clinic who actually knew about Cushing’s!

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat.

My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

Even after my successful surgery at the National Institutes of Health (NIH), a new doctor told me I had wasted my time.  Cushing’s wasn’t real.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency…

And growth hormone deficiency…

If you’re interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/

💉 Helpful Doctors: New York

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Michele M (Michele), added her Helpful Doctor, Toni Murphy, to the Cushing’s MemberMap

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Toni Murphy
Your Doctor’s Address Street Address: Harlem Road
City: West Seneca
State / Province: NY
Postal / Zip Code: 14224
What are your Doctor’s Specialties? Endocrinologist
What are your Doctor’s Hospital Affiliations? Mercy Hospital

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki 

ℹ️ Understanding Cortisol: The Stress Hormone Explained

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The Double-Edged Sword of Cortisol

Cortisol often receives negative attention, typically branded as the “stress hormone.” This steroid hormone plays a crucial role in the body’s ability to manage stress. However, many people remain unaware of the signs of elevated cortisol levels and what they might signify.

Recognising Elevated Cortisol Levels

You may have encountered social media trends that equate certain physical features, like facial puffiness, with high cortisol, often referred to as “cortisol face” or “moon face.” These viral portrayals have sparked curiosity and concern, but they may not paint the complete picture. Experts emphasize understanding cortisol’s broader role in health.

According to Dr. Jeannette M. Bennett, an associate professor in psychological science at the University of North Carolina at Charlotte, cortisol is vital for regulating inflammation and supporting immune function. It helps us fend off illnesses by managing the body’s responses to toxins and pathogens. This hormone also has significant effects on metabolism, blood pressure, blood sugar regulation, and the sleep-wake cycle.

As Dr. Nia Fogelman, associate research scientist at the Yale Stress Center, points out, cortisol enables the body to respond effectively to immediate dangers, providing the energy needed for fight-or-flight responses. However, certain medical conditions can lead to abnormal cortisol levels, either too high or too low, such as Cushing’s syndrome or Addison’s disease.

Identifying Symptoms of High Cortisol

Elevated cortisol levels don’t manifest through a single, obvious symptom, making them tricky to pinpoint. Nonetheless, there are several signs to watch for, including:

Sleep Disturbances**: Difficulty falling asleep or frequent awakenings can be indicative of high cortisol levels, though the relationship remains unclear.

Physical Changes**: Symptoms such as weight gain around the face and abdomen, increased hair growth, fat accumulation between the shoulders, and the appearance of purplish stretch marks may occur.

Mood Swings**: Increased irritability or overreacting to minor annoyances can signal high cortisol levels.

Food Cravings**: A strong desire for sugary, salty, and fatty foods can be a coping mechanism for underlying stress.

Persistent Fatigue**: Increased fatigue, headaches, and muscle weakness may also hint at elevated cortisol levels, particularly in the arms and thighs.

Hidden Issues**: High blood pressure, elevated blood sugar, and bone fragility are silent symptoms that require medical diagnosis.

 Understanding the Root Causes of High Cortisol

Several factors can lead to heightened cortisol levels:

Chronic Stress**: Unlike temporary stress, chronic stress can keep cortisol levels elevated long after a stressor has passed. Chronic stress may result from traumatic events or ongoing pressures in one’s personal or professional life.

*Mental Health Issues**: Conditions such as chronic alcohol abuse, depression, and anxiety can similarly elevate cortisol levels.

Cushing’s Syndrome**: This rare condition results from prolonged high cortisol levels and can lead to serious complications, including diabetes and bone loss. It may arise from high doses of corticosteroid medications or specific tumors that induce excess hormone production.

When and How to Test Cortisol Levels

Cortisol testing is not routinely done during medical check-ups, and there currently aren’t any at-home tests available to assess cortisol levels. Most healthcare providers only recommend testing for cortisol if there are symptoms indicative of conditions like Cushing’s syndrome.

If you experience symptoms linked to high cortisol, your doctor may suggest conducting tests to investigate further. Keeping track of your stressors and observable symptoms can help guide this conversation. Noticing that your symptoms worsen with increased stressors might indicate you’re not dealing with chronically elevated cortisol.

Several methods exist for testing cortisol levels, and they often involve multiple assessments due to natural fluctuations in cortisol throughout the day. These methods include:

Blood Tests**: Useful for diagnosing adrenal insufficiency and Cushing’s syndrome, but the timing of tests is crucial.

ACTH Stimulation Test**: Measures how well the adrenal glands respond to ACTH, requiring blood samples before and after an injection.

Urine Tests**: A 24-hour urine collection can be used to screen for Cushing’s syndrome.

Saliva Tests**: These are often done at home and can help identify risk for Cushing’s syndrome.

What Constitutes Normal Cortisol Levels?

Cortisol levels are typically highest in the morning and decline throughout the day, reaching their lowest point around midnight. The interpretation of cortisol levels depends on the specific tests performed.

It is essential to discuss test results with your doctor, who can help determine if your levels fall within a healthy range or indicate potential health issues.

The Importance of Awareness

Cortisol is integral to our body’s response to stress and various essential functions. However, persistently high levels can lead to multiple health concerns, including fatigue, weight gain, and mood fluctuations. If you suspect your cortisol levels may be elevated, it is advisable to consult your physician for evaluation and possible testing.

From https://aseannow.com/topic/1347298-understanding-cortisol-the-stress-hormone-explained/

 

Dr. Friedman Has Partnered With Ulta Lab Tests to Offer Affordable, Hassle-Free Lab Testing at About One-Tenth the Cost of Going Through Insurance

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Ulta Lab Tests Overview for Dr. Friedman’s ​​​​​​​patients.

Ø  Tired of dealing with insurance or the Quest/Labcorp bureaucracy to get your labs done.

Ø  Frustrated at the slow turnaround times at Quest/Labcorp.

Ø  Dr. Friedman understands your concerns and has partnered with Ulta Lab Tests to offer affordable, hassle-free lab testing—typically at about one-tenth the cost of going through insurance, with fast turnaround times.

Ø  The Ulta Lab Tests platform is especially helpful if you are uninsured, underinsured, or have a high deductible.

Ø  Both you and Dr. Friedman will get the results in a few days.

Ø  Please note that Ulta Lab Tests does not work with insurance or handle any insurance billing or reimbursements; all services are self-pay. The only exception is that HSA and FSA cards may be used at checkout.

Patient Instructions 

1.         Change your preference for labs to Ulta Lab in Acuity and/or let Dr. Friedman know at the time of appointment you want to use Ulta Lab

2.         Go to https://www.ultalabtests.com and sign up for an account.

3.         Open the Ulta Lab Tests email from Dr. Friedman’s staff and click the link to your pre-filled cart. This will display the corresponding prices for the selected tests.

4.         Activate your patient account by entering the required demographic information.

5.         Choose a patient service center based on your ZIP code (Quest charges $12.95; “Premium Draw” fees vary).

6.         Complete payment for your order.

7.         Check your email for your order confirmation. Click the embedded link to access your Patient Portal, where you can view and download your Patient Service Center Requisition Form.

6.         Schedule your blood draw (Quest and other appointment optionscan be made through your patient portal).

7.         Review your patient instructions listed on your requisition form to view fasting and testing requirements.

8.         You will receive an email notification once your results are available. From there, you can access them in your patient portal. Dr. Friedman will also have access to your results once they are available.

9.         If you are a new patient, wait for Dr. Friedman to send you a summary of your labs. If you don’t hear from him, send us an email. If you are a follow-up patient, discuss the labs with Dr. Friedman at your next appointment