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Laura's Story

This is a whole new experience for me. I never heard of the word cushings until I walked into my endocringologist office and he asked me if I had been taken steriods. No, I haven't. With just a blood work up, he told me I had cushings. I am not sure what gave him this idea, was it the buffalo humps on my neck, shoulders, back, legs, arms and yes, even on my face? Yes, at times I look like gargoyle. Was it my feet were turning purple from extreme edema? He explained to me what it was and I told him about my growth on my adrenal gland. My first cortisol test was 50, the second 47 and the third was 48. You would think this would be straight forward. Nope, I had an MRI of the pituitary gland which showed no tumor, but my ATCH levels indicated quiet differently. This mixed up person now is waiting for what to do next.

I have been through alot in my life time. I am a breast cancer survivor who is about to approach my 5 year anniversary of being cancer free and about to come off of tamoxifin. In retrospect, dealing with the side affects of chemo and radiation was tough, but I knew there was a pot of gold at the end of the rainbow. I never let my chemo or radiation therapy interfer with my lifestyle. Having cushings, has totally limited me. I have gained 150 pounds at a remarkable rate. Omar, the tent maker, is going to move in to be my fashion designer because i don't even fit in fat clothes. A simple trip to the store leaves me whipped. The only place that offers me comfort is swimming in an ice cold ocean or jumping into a cold pool. It takes the swelling down significantly. But, this is not practical, nor is it as solution. My fortune has been with all the weight that I have gained, I don't have diabetes, heart disease, or other life threatening conditions which can come as a result of the weight. But, one day, if there is no resolution to my cushings, someone will be peeling me off the floor.

At times, I don't think I can last another day. I stay on top of my endocrinologist to make sure there is a next step forward. Until the ATCH blood work came back, I was in with the surgeon who was going to remove my adrenal gland. Now, that there is a monkey wrench thrown into mix, there is a need to find out what to do next. So, I sit and wait until I get called for another test. I am not sure what is the delay.

So what makes me dealing with cushings so difficult. I am a happy go lucky type person, always on the go, lives life to the fullest and use to enjoy being active from walking 5 miles a day, kayacking , swimming, dancing, and a social butterfly. Now, I don't even want to go outside but unfortunately, I do have to work, so, I do what I have to do and that is it. This is like an 180 degree turn around in personality for me and I don't like it.. Hopefully, there is another pot of gold at the end of the rainbow for me. I don't see the rainbow as yet but I know its there just not visible right now.

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