Showing posts with label appearance. Show all posts
Showing posts with label appearance. Show all posts

Monday, April 16, 2012

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.

~ * ~ * ~ * ~ *

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.


Wednesday, June 4, 2008

Before and After Photos

Pulling together this timeline of photographs was the most difficult part of being sick for me. It's the toughest even while considering everything I have gone through to get diagnosed:
  • all the midnight and 4 am blood draws

  • the PICC line that aggravated by arm veins and made my arm go numb

  • lying on my bad back, being still in the MRI tubes for over an hour at a time, twice

  • having the IPSS while wide awake

  • all those doctors appointments where I would have to start telling my story from scratch in hope that this time, someone would believe me
  • all the uncomfortable moments when I felt people didn't believe that I was really sick (just fat).
Gathering my photos and posting them reminds me of a life interrrupted.

It reminds me of a life that was filled with insecurity and self-hatred over my body.

Even though I am smiling in these photographs--and probably was smiling when I saw friends and family, I know how much I have struggled with my weight since I was a teenager... How much I worked and worried trying to look 'presentable' and 'good enough' for every event I ever had to attend.
I'd gain weight and not really know why, but I continued to act like it didn't bother me. 
It bothered me.

As a feminist, I hated these negative thoughts. Even so, I could not stop them. I knew better than to think like that, and my friends never really knew that was happening in my head. These photos symbolized years of being insecure and wondering if being overweight meant being unlovable.
I endured the emotions that accompanied this project because I know it would help depict my struggles with weight in an undeniable way, and that with the right medical team, it would make a difference.
Now, despite my size, I know I didn't do this to myself.

I didn't let myself go.

I wasn't lazy.

I didn't eat too much.

More importantly, I trusted my instincts and I didn't give up.

I have much more forgiveness for myself than I could have ever found otherwise. I attribute that to my Cushing's diagnosis. And for that, I am thankful to this journey.

~Cushie Melissa

P.S. And for those of you going through the Cushing's diagnosis battle yourself, please know that I know how heartbreaking it is to see your former selves and compare them to your current self.
Do it anyway. You may be on your way to changing your life and finally feeling better.

******************************

1994


1996



















1999 (face gets fuller)






2000 (my highest weight up to that point)



2003  (after Atkins diet success)


2005  (fuller face, weight gain,
irregular periods, anxiety)

2006
truncal obesity









Feb 2007



April 2007 -  fuller face





May 2007