Day 2: Cushing’s Awareness Challenge 2015



Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be.  I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, starting all over again.

It’s been like this since I was being diagnosed with Cushing’s in the mid-1980’s.  You’d think  things would be improved in the last 28 years.  But, no.

My mind wants things to have improved, so I’ve taken on more challenges, and my DH has provided some for me (see one of my other blogs, MaryOMedical).

Thank goodness, I have only part-time jobs (4 0f them!), that I can mostly do from home.  I don’t know how anyone post-Cushing’s could manage a full-time job!

I can see this post morphing into the topic “My Dream Day“…

I’d wake up refreshed and really awake at about 7:00AM and take the dog out for a brisk run.

Get home about 8:00AM and start on my website work.

Later in the morning, I’d get some bills paid – and there would be enough money to do so!

After lunch, out with the dog again, then practice the piano some, read a bit, finish up the website work, teach a few piano students, work on my church job, then dinner.

After dinner, check email, out with the dog, maybe handbell or choir practice, a bit of TV, then bed about 10PM

Nothing fancy but NO NAPS.  Work would be getting done, time for hobbies, the dog, 3 healthy meals.

Just a normal life that so many take for granted. Or, do they?



Plan C: A local oncologist specializing in GI NETs

a tale of two tumors

Last week, I had an appointment with an oncologist specializing in NETs.  I was my usual nightmare patient self, walking into the appointment with a stack of symptoms and labs as long as my arm.  I tried my best to keep the list short and to the point, but the more questions she asked, the more messy it got.

I got a good first impression of this doctor.  She spent a lot of time with me and M.  She was happy to look at the pictures I brought with me and we discussed my labs at length.   I even ran my crazy somatostatinoma theory past her and showed her my suppressed TSH, IGF-1, gastrin and glucagon labs that were indirect evidence supporting this theory.  She didn’t laugh at me, which other doctors undoubtably would have.  Instead, she peppered me with questions about pituitary function post pituitary surgery (as this is…

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Next-Generation Compounds and Support Commercialization of Korlym(R)

Corcept markets Korlym® for the treatment of Cushing’s syndrome, a severe orphan illness that afflicts 20,000 people in the United States, approximately half of whom are cured by surgery. Corcept believes that revenue from the sale of Korlym, combined with the company’s cash reserves, will allow it to reach cash flow breakeven while fully supporting its development activities.

via Warrant Exercises Generate $17.2 Million; Proceeds to Advance Next-Generation Compounds and Support Commercialization of Korlym(R).

Cushing’s syndrome vs simple obesity. How can a needle be found in the haystack?

Endocrinology Today 02/2015; 4(1):30-35.

Clinical recognition of Cushing’s syndrome should generally follow from the observation of a constellation of compatible clinical features that progress over time. Screening for Cushing’s syndrome in patients with individual features of the metabolic syndrome, such as obesity, hypertension and hyperglycaemia, is not recommended.

Early diagnosis reduces unnecessary suffering and the ultimate lifetime sequelae of Cushing’s syndrome. Confirmation involves the demonstration of biochemical hypercortisolism, and the extent of diagnostic testing needs to be based on the degree of clinical suspicion.
Read the whole article here, in PDF format

What are you thinking?! Cushing’s Disease is never part time or on the side!

Some of you may wonder why I have named this blog “zebraontheside.” First of all, Cushing’s Disease is a huge part of my life and it has impacted every aspect of my life in some way or another. Not only has it impacted my life but it also impacts those who continue to support me…

via What are you thinking?! Cushing’s Disease is never part time or on the side!.


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