Cushing's Info

Hi there, I'm Cookie the Cushie!

I am 62 years old and have acquired Cushing's from high dose Prednisone over an 8 year period trying to survive the ravages of Lupus SLE.  I kept getting fatter, and fatter, and sicker and sicker. All of which was blamed on the lupus and lack of activity.

Before lupus, I was a long distance runner, I always weight 108 pounds and on average ran 5 miles after work each day.  Boy, has my life changed and sadly also the opinions of my friends.

The first sign of trouble was 2 years ago when my Rheumatologist tried to wean me down and then off of 20 mg Prednisone a day.  She added Methotrexate to the mix and was slowly decreasing the pred.  However, when I hit around 10 MG prednisone per day.  The pain became unbearable, the fatigue was just too tired for words, brain fog, emotional roller coaster.  I thought the Lupus was flaring again so I got right in to see her.  She immediately took me right next door to the endocrinologist, who had my history along with my Rheumatologist standing there.

The Endo took one look at me and said: she has Cushing's.  She also ordered tests the one I remember most was the 8AM Cortisol test as I had to go to a specific hospital to have it done.  What confused me was that my 8 AM Cortisol was .4--barely enough to be alive--and yet I am a Cushie--I guess the damage had been done, as the endo later said that there is no adrenal activity left to speak of.  They tried to keep me at a maintenance dose of 10mg prednisone, and yet I still was having really scarey adrenal insufficiency periods of time(diarhhea, vomiting, weakness, on and on). I seem to be somewhat ok with a maintenance dose of 15 mg prednisone.Over the last two years, I have repeatedly tried to wean in hopes of losing the Cushingnoid features that are so very shameful to me(people think I have let myself go and should joine overeaters' anonymous, I have been told such things repeatedly, very hurtful)

Twice in 2010 I have been hospitalized with adrenal crisis, and I do know that this is one way that I would rather not die! If I have a choice that is.I have developed Diabetes II, HIgh Blood Pressure, very very thin skin that is constantly bruised up, and oh, boy what a moon face I have(even when I weighed 108lbs I had a little round face), but now the moon face with three chins is both embarassing and uncomfortable, I have gained over 100 pounds, all in my face, neck, breasts and waist.  It is difficvult to get up and down because of the big belly.  I have tried and continue to try to eat low carb, and at least walk every day.  Yet the scales continue to move higher.

The hardest part of this all is that there is such disbelief in the community as to what Cushing's is.  I was very active in the community and am now bed ridden and cushie fat. The looks of disgust are hard to take.  If only people could understand that I spend most all day in bed because of aching joints and weak muscles and those days that I can go out a little are a small part of a big big plan--just so I can live a little.  It seems to me with steroid induced Cushings, that the only solution is to wean down only to find that an adrenal crisis is scarey and not understood in most ER rooms.  One ER Doctor said how can you need a prednisone shot and be low when you are already so fat. Well, that's it for me for now.

I pray that somehow, just identifying with my story gives someone out there a little understanding. As we all need love and understanding especially with this "ugly" disease.

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