Saturday, March 31, 2012

236,892 Page Views & Counting

April is my favorite month of all. I think about it all year!

It's Cushing's Awareness Month.  On April 8th, we honor Dr Harvey Cushing's, the father of modern neurosurgery and the namesake to this terrible disease I have. We don't blame you, Harvey. We like you!
I wanted to let you in on a project I've got going. In appreciation of where I am in my journey and all the close friends I've made along the way, I plan to blog every day through the month of April. Maybe, just maybe, a few patients suspecting Cushing's will see enough information to reach out and stand up to the MDs that are blocking their way to treatment, cures, and ultimately, reclaiming their lives.

Now, back to the writing and daily blogging for a sec. For someone so scatterbrained, exhausted, and unreliable as someone with Cushing's, even agreeing to a challenge strikes fear in me. Eek. That's a lot of commitment, and Cushing's makes us so flaky, I really hate that part. All I can do is try, right?!

This blog has been an important part of my life since its inception in May 2008. It was a special place that I created where I could talk about Cushing's in any way I wanted, any time I wanted. For the past three years, I have shared as much and as often as I could of myself, my experiences, and tidbits of knowledge I accumulate along the way. Bringing more awareness to others is critical to how I have made sense of and come to accept this haunting disease.

So for me, this challenge is very personal.

As a pre-disease perfectionist, I always wish I could do more here.  I wish I could blog every day. I have so much to say Cushing's and how it changes the trajectory of my life each day.  However, I struggle to maintain the energy for myself and my family. For this one month of April, I really want to work to balance my focus on Cushing's and my focus forgetting Cushing's enough so I can be present with my family.  I hope I can hold it all together. I can only do my best.


I always wish this body and mind would let me do more or not hold me back.  I feel so trapped in this body.  It is also so important to my self-identity to combat this reality of me being stuck inside the house all day.  I realize I can be sick with Cushing's and still contribute something to this world. With this blog and these numbers, I sorta kinda maybe see the impact I have already made in my little corner of the Cushing's world.  

I think of all the Cushing's patients -- fearful, lost, defeated -- that have come to me by way of this blog, and I am thankful that something I have done could help another kind soul in this world. I always wish I could spend more time with each person who writes me--four people last week!--but I am without a doubt always rooting for them. That's what I see in this counter, and it always makes me smile. 
Seeing that graph below makes me feel pretty, pretty, pretty, pretty, pretty certain that there are many more undiagnosed Cushies in this world than any doctor would ever care to admit.  That’s fine by me.  While I can’t control the doctor side, I can do my part to educate and advocate for the patient side.
Hope you stick around in April for a fun month, as we learn more about facing Cushing’s with Moxie.

Bye for now.  Melissa

Monday, March 26, 2012

Korlym Release Ahead of Schedule

A birdie in the know told me that the big release of Korlym is ahead of schedule.  Initially set to be released some time in May 2012, it now seems that Korlym is set for April 11, 2012. 
Korlym is the first FDA drug approved for Cushing's patients who have undergone unsuccessful surgery (-ies). It is expected to help patients just like me.

Sunday, March 18, 2012

Rest in Peace, Liz. Cushing's Steals Another

It is with great sadness that I report that Death took another friend with Cushing's today.

Liz R was only 46 years old and leaves behind a 16 year old daughter in London, England. Liz was very active on the message boards during my tenure there.

This marks the 3rd Cushie sister lost in 8 months. Who will be next? Me? Another of my friends? When will we get the help we deserve? When will doctors see that disease is destroying our bodies day after day?! What a devastatingly sad day, folks. 

Rest in peace, dear Liz. May your body, soul, and spirit fly high now without the burden of Cushing's.

Monday, March 12, 2012

Cushing's Help blogtalkradio program

Thank you, as always, to MaryO and RobinS for making this chat with Dr Friedman, the wonderfully knowledgeable and compassionate diagnostician, possible. This is truly for the betterment of all those suffering with Cushing's as well as any friends or family who care to take a listen. 
Have questions about the new Korlym? How about Korlym vs ketoconazole? About medical vs surgical treatment for Cushing's.   Ask Dr. Theodore Friedman.

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Listen live at
Call in to ask your question at 
(646) 200-0162
This interview will be archived afterwards at the same link and on iTunes Cushie Podcasts.

Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushing's disease and syndrome.

Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.

Catch up on all the Cushing's information Dr Friedman has shared with this community through the years.