Susan G

It’s Cushing’s Awareness Day. You want to know why I’m so passionate about this rare disease? For those who don’t know my story, I’ll try to give you the Reader’s Digest version.

In 1997 or so, while living the busy life of an expat in Japan, I started having very strange symptoms. I developed tachycardia, with a normal resting heart rate of about 120. I started having severe panic attacks. I was so fatigued that I would get tears in my eyes just looking at a set of stairs (not good when you are riding the subways everywhere). I’d wake up 4 to 5 times a night, usually saying that I couldn’t sleep because the bed was shaking due to my heart pounding so hard. I became virtually anorexic for a while (I lived on Cream of Wheat for months). I developed kidney stones. When we came back to the U.S. I started seeing doctors. I got pills for insulin resistance, high BP, high cholesterol, anti-depressants, anti-anxiety, PCOS (most of which were never properly diagnosed). My face stayed bright red all of the time — I quit wearing blusher. I started gaining weight, but mostly in my neck, face, and abdomen. Then my feet and legs started giving out. I shuffled when I walked, like I was 100 years old. I couldn’t dry my hair without lying down halfway through because my arms hurt too much to hold up the dryer. A shower totally exhausted me. And hot? Oh my goodness. My thermometer was broken — simply trying to change the sheets would leave me drenched in sweat. I was dying … I knew it … but the doctors said “as we age…” or “exercise more, eat less” and threw pills at me.

One day, I was watching Medical Mysteries, and this woman came on describing a battery of symptoms that sounded eerily familiar. As I listened closer, I realized her life sounded just like mine! Her name is Sharmyn Mcgraw, and her courage in telling her story made me realize I wasn’t crazy, or lazy and fat. I had a mission now … and that was to get my health back. I found cushing’ (thank you, Mary Kelly O’Connor), and from there found Dr. Theodore Friedman (endocrinologist) and Dr. Ian McCutcheon (neurosurgeon). My pituitary tumor was removed in 2007 (brain surgery through the sinuses … fun) and I started a road to recovery. I have some residual issues, and there is always the possibility my tumor will return, but my life is so much better than it was before. Those four people helped save my life, and I will forever be grateful to them. I hope that I can be instrumental in helping another patient in their fight with this rarely diagnosed (but not rare) disease!

(On Facebook)