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Kristin's Story

After nearly a month of tests & waiting, I received a formal diagnosis from my doctor on 12/20/07- I have ACTH Independent Cushing’s Syndrome. Ok…so what does this mean?

A tumor developed on one of my adrenal glands, causing it to produce too much cortisol and caused the other gland to stop producing all together. Good news is that it can be treated by the removal of the over active gland. I’ll have to be on hormone replacement therapy until the other gland can function normally on it own (long-term, short-term? don’t know yet).

Apart of me wanted to scream with joy, “Yes, I finally have an answer to this hell!” Now I know what’s wrong (and it’s not all in my head). This has to be the best Christmas present EVER - I get my body back.

Another part said, “Damn, more than 4 years of feeling like I’ve been trapped in someone else’s body.”

I'm only 30, have a beautiful 4 1/2 year old son, a wonderful husband and my career is just starting to take off. Plus, I'm a fitness instructor in my spare time. I'm suppost to be the "face" of health & fitness. This isn't suppost to happen. I'm suppost to be in my prime with lots of energy. Wrong. I look back over the last 4 years...

More than 4 years of killing myself in the gym with no results, 4 years of watching my once youthful, fit body become one that looked abused by overeating & lack of exercise, reluctantly buying the next size up in clothing (making sure to cut the tags out so I wouldn’t be reminded of the “new” size I’d become), 4 years of trying “alternative” eating regimens (only to become more obsessed with what I ate or didn’t eat).

Before Cushings set in, I was in the best shape of my life and extremely fit, weighing in at 130 lbs. Then I got pregnant and initially lost some of the pregnancy weight. About six months after I had my son, the weight loss completely stalled and I slowly started to balloon. The last 6 months has been the worst & my weight has ballooned to 180 lbs.

Before I was diagnosed with Cushings Syndrome, I had begun to accept the fact that this is the way my body is going to look. Fine, I can deal with that. What I feel most saddened by is the decrease & down right lack of energy I’ve had. Plus, my body just f*&^ing hurt (joints, back, racing heart, hot sweats, swelling & bloating ALL the time). The list goes on & on…

Based on what my doctor has said & the information I’ve read so far, it appears that the surgery has a high success rate and my body should return to “normal” once the tumor is removed.

I have surgery scheduled for Jan. 29. I'm anxious, excited and terrified all at the same time. From what I've read in patient testimonials, recovery can be long & frustrating. I'm hopeful and will be grateful for any relief at this point.

It has been a tremendous comfort to read the stories of others affected by this terrible disease. Most of the time, I feel like I'm losing my mind & helplessly watching my body deteriorate. But I know I'm not alone - thank you.

I've been sharing my Cushings journey on my personal blog, so others can learn about this rare disease & also find comfort in the fact that they too are not alone. Please feel free to visit, read, share or comment.

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