Day Eighteen, Cushing’s Awareness Challenge 2015

Posted on April 18, 2015 by MaryO

 

I have seen this image several places online and it never ceases to crack me up. Sometimes, we really have strange things going on inside our bodies.

Usually, unlike Kermit, we ourselves know that something isn’t quite right, even before the doctors know. Keep in touch with your own body so you’ll know, even before the MRI.

I asked doctors for several years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. “It’s too rare. You couldn’t have Cushing’s.” I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

Finally, someone did.

These days, there’s no excuse to keep you from learning all you can about what’s going on with you. There’s your computer and the internet. Keep reading and learning all you can. You have a vested interest in what’s going on inside, not your doctor.

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Day Sixteen, Cushing’s Awareness Challenge 2015

Posted on April 16, 2015 by MaryO

This is one of the suggestions from the Cushing’s Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.

If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.  Make a calendar showing which days you had what symptoms.  Google calendars are great for this.

This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

 

7a4e4-maryoonerose

Filed under: Cancer, Cushing's, Rare Diseases | Tagged: , , , , , , , , , , | Leave a comment »

Helpful Doctors are Returning!

Posted on February 13, 2015 by MaryO

harvey-surgery

We’ve done this in the past and I’d like to do it again.

Our earlier database was hacked and I didn’t feel it was worth rebuilding because so much of the info became outdated.

If you are happy with your team of doctors and feel like you have gotten good care please list them, their specialty, where they are located and anything else you’d like to say.

If you don’t want to list them here, you may use the form at http://www.cushings-help.com/forms/doctor.htm

I’m making a continually updating database so you can watch it unfold here: https://www.obvibase.com/p/dbz5EouPMSME

The Non-US doctors will be listed here: https://www.obvibase.com/p/opDSfNQ13ZHX

I can tell it’s going to be a wide page so you’ll have to scroll across the bottom. As more entries (besides my test one!) are added, you can sort by state, country, etc.

Thank you in advance! A good doctor can change a life…but not every good doctor is good for every patient.

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40 Days of Thankfulness: Day Twelve

Posted on October 23, 2010 by MaryO

Today, I am thankful for Saturdays.  It’ the one day of the week I don’t have to be anywhere, do anything.  I can do webwork, if I want, but I don’t have any deadlines.

I never have doctor appointments on Saturdays, no medical testing.

No piano students.  I don’t even talk to prospective students on Saturdays.

It’s a day for maybe brunch, a trip to the farm, maybe a little TV, maybe (most assuredly!)  a nap.

Saturdays are family days, even though our family is smaller than it was.

Saturdays are always full of promise.

Off to see what today’s promise is…

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