Day 16: Awareness in Action

I tweeted and tagged Ashley Judd. She replied.



This one below is easier to read.

Day 14: My Tumors = Your Pills: Ashley Judd & the Cushing's Connection

Over the years with Cushing’s, I have become increasingly more isolated. A long time ago, I used to be out making the news. I have seen all my interests wane. I hardly turn on the TV anymore.  I don’t watch any movies, news programs, MSNBC, election coverage. I frankly cannot handle all the noise, talking, and distraction. It is the ultimate assault on my silence that is the only thing that keeps my brain from racing. If it is happening in the news, I usually hear about it from my husband or facebook.

So imagine my surprise when I was reading an article online this weekend, and I just happened to see something entitled, Ashley Judd explains Puffy Face. Instantly, I knew she had to be on steroids. I clicked through to read the article Ashley Judd Slaps Media And Critics in the Daily Beast. I scanned the article.  Ah, she said it.  STEROIDS… ‘multiple rounds of steroids.’

The story goes like this: Ashley Judd took steroids to fight a sinus infection and the flu. Since then, the media has covered this -- extensively and insensitively – as people hiding behind their computer screens and smart phones jumped on the hateful band wagon.  The collective internet went nuts with speculation about what was wrong, what did she do to herself, what in the H-E-Double Hockey Sticks has happened to her. 

Ashley 'crime.'  What America thinks is hideous. What must they think of us tumored-Cushies?

In the category Best Slap Back by a Celebrity, Ashley Judd responds with honesty, integrity, compassion, passion, and disgust. She gives all the critics with not only a shame-on-you-for-how-you-treated-me, but a shame-on-all-of-you-for-treating-each-other-this-way.

To paraphrase, Judd asks how this society has managed to let criticism of women’s appearance go unchecked and why do women partake in criticism that entraps them inside their own world of trying to keep up with and never measuring up to the woman (friend or foe) sitting next to them.  Judd writes,

“The Conversation about women’s bodies exists largely outside of us, while it is also directed at (and marketed to) us, and used to define and control us. The Conversation about women happens everywhere, publicly and privately. We are described and detailed, our faces and bodies analyzed and picked apart, our worth ascertained and ascribed based on the reduction of personhood to simple physical objectification. Our voices, our personhood, our potential, and our accomplishments are regularly minimized and muted.”

Bravo Ashley Judd.  Bravo.

It would have been so easy to send a publicist to explain her medical issue and exit stage left. In fact, the actress tried that. The clamoring did not stop.  Ashley earns my respect for not backing down, for doing what a strong smart woman does: she chastised in order to make people think.  I just hope people take the time to understand the message.  I certainly applaud you, Ashley Judd.  I applaud your passion, fortitude, and overall I’ve-Had-Enough. After fighting a disease as devastating as Cushing’s, my smarts and strength are all I have left.

Is there hope for the rest of us, if they treat the gorgeous Ashley Judd this way?

What’s that you say?  So, how does this relate to Cushing’s? Why does this all make me so giddy? Because, you see, Ashley Judd’s unfortunate media circus brings attention to Cushing’s. Yes, it is true.  Let me explain.

When people say steroids in the medical sense, they usually mean a hydrocortisone replacement.  You see, hydrocortisone and prednisone are synthetic corticosteroids meant to mimic the natural hormone cortisol produced by the adrenal glands. Both natural cortisol and these synthetic cousins relieve inflammation (swelling, heat, redness, and pain) and are used to treat certain forms of arthritis; disorders of the skin, blood, kidney, eye, thyroid, and intestinal (e.g., colitis); severe allergic reactions; multiple sclerosis, and asthma. They work to treat other conditions by reducing swelling and redness and by changing the way the immune system works.

What most people don’t realize is that steroids and Cushing’s are related. While this section on Wikipedia details the distinction, I’ll share my simple version.

Her medication = my tumors

There are two kinds of Cushing’s:  endogenous Cushing’s and exogenous Cushing’s.

endo (internal, “within”): endogenous Cushing’s originates from tumors in the body

exo (“outside,” “external”):  exogenous Cushing’s originates from medication

While the names are different, the symptoms are the same. So, whether a person takes steroids or has a tumor, we are all in the same boat when it comes to the suffering from the physical, mental, and psychological damage.

So, to Ashley Judd, I want to say, Welcome to the Cushie Club.  I hope you are not here long.  I appreciate your voice and social activism. As we say to each other on the Cushings-Help.com: we are sorry you have to be here, but we are glad you found us.

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ADDITIONAL READING:

Ashley Judd talks to Access Hollywood about the response of her op-ed.

Folks responding to Ashley Judd’s article share their own puffy face moments.

Author responds to Ashley Judd with her own puffy face moment, discusses using prednisone to fight lupus

Scott Hamilton: Pituitary Patient & Advocate

Ice Skater Scott Hamilton Undergoes Brain Surgery, People.com

Olympic champ Scott Hamilton underwent brain surgery Wednesday to remove the recurrence of a benign tumor near his pituitary gland, which first appeared in 2004. "They're happy with the progress of the entry process, and now [doctors] can begin to get rid of the tumor," the figure skater's rep, Michelle Thornbury, tells PEOPLE of the procedure, which was completed late Wednesday.

Hamilton, 51, had the surgery in Boston, where he is surrounded by family, including his wife Tracie, their friends and his brother Steve. "They're all feeling the love coming from all of us," the rep says. After the surgery was complete, Hamilton's rep told PEOPLE, "Scott is resting comfortably and expected to make a full recovery. He and his family are so thankful to the doctors and surgical team for taking such good care of him and grateful to everyone for their thoughts and prayers."

He will remain in ICU for a couple days and is expected to return home next week.

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Scott Hamilton undergoes surgery for recurrent brain tumor, CelebrityDiagnosis.com

Craniopharyngiomas are tumors derived from pituitary gland tissues, and typically form in area above the pituitary gland. It is most common in children between 5 to 10 years old, and again in individuals over 50. It is fairly uncommon, only occurring in 2 per 100,000 people.

Craniopharyngioma causes symptoms in one of three ways:

1. Increasing the pressure on the brain (increased intracranial pressure). This causes symptoms of headache, nausea and vomiting, and decreased balance.

2. Disrupting the function of the pituitary gland. This leads to hormone imbalances which can cause growth failure and delayed puberty in children, loss of normal menstrual function or sex drive, increased sensitivity to cold,fatigue, constipation, dry skin, nausea, low blood pressure, and depression. Pituitary stalk compression can lead to diabetes insipidus(DI)- causing increased thirst and urination, and may increase prolactin levels- causing a milky discharge from the breast(galactorhea).

3. Damaging the optic nerve causing visual disturbances, and even blindness.

Treatment of craniopharyngioma is either surgical or with radiation, depending on the size and location of the tumor.

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Not Again: First, Scott Hamilton Fought Off Cancer. Now the Popular Skater Is Battling a Rare Brain Tumor, People.com, March 2005

Now Hamilton, 46, must battle craniopharyngioma, a rare, noncancerous tumor near his pituitary gland that, if left untreated, could leave him blind.

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Scott is a member and advocate for the Pituitary Network Association. He appears in a short but important video on the PNA website.

SUSPICIOUS MINDS: The King of Rock & Roll had Cushing's?

What if we could sing this to our doctors:

"Why can't you see
What you're doing to me
When you don't believe a word I say."
~ Elvis' Suspicious Minds


In an article release today, Elvis Presley's personal physician details the medical health of the legendary rock star. Up to this point, Dr. Nick was held accountable for the King's death, even losing his medical license in Tennessee for the over-prescription of drugs that led to Elvis' death.

I read the article with a fan's fascination. I was struck by the simple word included in the article: Cushing's.

Perhaps Elvis had what I have: Cushing's disease.

The article mentions Cushing's syndrome from excess steroid usage. However, in general, the symptoms Elvis sought to medicate heavily are things I have wished someone could help me with. Perhaps Elvis had Cushing's disease as an underlying cause to all of his symptoms? The article says Elvis' hospital test results showed Cushing's syndrome. What if it was the other way around? Perhaps Elvis had severe pain from Cushing's disease (pituitary tumor could be the cause of the eye pain), and the docs gave him additional steroids to help the symptom of pain. It is possible!

He couldn't fall asleep at night.
He gained weight and lose weight.
He was irritable and impatient and volatile (at times).
He had headaches and eye pain.
He had to stop what he was doing and sit down to take a break.
He had diarrhea and colon problems.

And the list goes on and on.

Elvis was found dead at the toilet after vomiting. Perhaps he vomited from low blood pressure caused by low cortisol. Perhaps adrenal insufficiency.

What does it do to our reality if Elvis was not just an eccentric celebrity with money? What if he was a sick man, miserable and in pain, trying to keep up with a daily schedule that is maxxed out beyond what any of us with Cushing's (or without Cushing's) could imagine??

If you are a Cushing's patient, did you find yourself nodding in understanding when reading this story??

Elvis had the money and the means. He got the prescriptions that he felt he needed. He was treating the symptoms, not the disease. Most physicians didn't know any better. Most physicians don't know any better now.

The photos include in the article show an Elvis whose weight came on fast and suddently. I remember the Elvis of the 70s, and I remember being among the millions that wondered how that handsome legend's appearance could change so drastically.

Stars-doctor-finally-reveals-true-madness of final days.

This makes me so sad. I hope the medical community wakes up and figures out how to treat this disease. What other promising lives are lost too early to this RARE disease called Cushing's??


-Melissa

P.S. Remember, celebrities do not always disclose their medical struggles to the public. This is a relatively new phenom. Remember my post about JFK having Addison's?

JFK HAD ADRENAL TROUBLE, TOO!

During our research for Cushing's disease and its post-op counterpart Addison's disease, Jonathan and I have turned the internet upside looking for stuff. Reading reading reading. This was one very interesting historical fact I didn't know.

President John F. Kennedy suffered from Addison's disease, or adrenal insufficiency. The John F. Kennedy Presidential Library includes a four-page summary of his condition and how he handled it as he ran several campaigns.

As an aside, we have been doing family research on ancestry.com. I found a fourth cousin who traced our shared side of the family to the Kennedys. My grandmother and Rose Fitzgerald Kennedy are 8th cousins, and JFK Jr. and I are/were 10th cousins.

Perhaps adrenal issues run in our family....?