🌝Day 3: Cushing’s Awareness Challenge 2020

 

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 I went.  I know it’s working and my knee is getting better, but it’s such a time and energy sapper.  Neither of which I can really spare.

Maybe now that I’m nearly 14  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’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…

 

🌝 Day 1: Cushing’s Awareness Challenge 2020

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!

🎬 Video: Pituitary tumors: Mayo Clinic Radio

 

This interview originally aired July 6, 2019.  Dr. William Young Jr., a Mayo Clinic endocrinologist, discussed pituitary gland tumors.

The pituitary gland is a hormone-producing gland at the base of the brain. Sometimes known as the “master gland,” the pituitary gland produces and regulates hormones that help the body function. Pituitary tumors are abnormal growths that develop in your pituitary gland.

Some pituitary tumors result in too many of the hormones that regulate important functions of your body. Some pituitary tumors can cause your pituitary gland to produce lower levels of hormones. Most pituitary tumors are noncancerous (benign) growths that remain in your pituitary gland or surrounding tissues, and don’t spread to other parts of your body. There are various options for treating pituitary tumors, including removing the tumor, controlling its growth and managing your hormone levels with medications. Your health care provider also may recommend a wait-and-see approach.

💉 Helpful Doctors: Texas

 

 

 

Meghan T added her Helpful Doctor, Sasan Mirfakhraee, to the Cushing’s MemberMap

 

How would you rate your Helpful Doctor? 4/5
Your Doctor’s Name Sasan Mirfakhraee
Your Doctor’s Address 2001 Inwood Rd
Dallas, TX 75390
Phone (214) 6452800
Email sasan.mirfakhraee@utsouthwestern.edu
What are your Doctor’s Specialties? Cushings Disease/Syndrome, type 1 and type 2 diabetes mellitus, as well as thyroid, pituitary, and bone remodeling disorders.

 

 

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💉 Helpful Doctors: Florida

 

Lili added her Helpful Doctor, Agustin Andrade, to the Cushing’s MemberMap

 

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Agustin Andrade
Your Doctor’s Address 4308 Alton Road
suite 310
Miami Beach, Florida 33140
Phone (305) 672-7560
Email
What are your Doctor’s Specialties? Thyroid Cancer
Thyroid Disease
Parathyroid
Pituitary
Hospital Mount Sinai Medical Center Miami Beach Florida

 

 

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🎤 Archived Interview: Heather S, Pituitary Cushing’s Survivor

 

Heather, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM

 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/06/05/interview-with-heather-s-pituitary-cushings-survivor

 

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🎤 Archived Interview: Jackie (samsmom) and Jordan

 

 

Jackie (samsmom) & Jordan: Cushing’s in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist. Jackie has appeared on Discovery Health discussing her fight for a cure for her younger daughter, as well. Later, the gene responsible for Sam’s illness was found. Her father carried the gene as did her two sisters. Jordan, Jackie’s oldest daughter, has recently had her adrenals removed.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/15/interview-with-jackie-samsmon-jordan

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