Sunday, April 1, 2012

What is Cushing's Disease?

Cushing's Disease is caused from a tumor. The most common location for the tumor is in the pituitary gland. The next most common place is the adrenal glands. After that, the next most common place is in the lungs. The tumors can be anywhere, but those are the most common sources.

The tumor secretes a hormone called ACTH. The ACTH tells the adrenal glands to put out more cortisol. This causes an over abundance of cortisol in the person's body. What is cortisol? Cortisol is the natural steroid our bodies make. We have to have cortisol to live. However, too much cortisol causes major destruction in the body.

Throughout this month, I plan to talk about how Cushing's Disease has affected my life. It spares no part of our body or mind. It's a horrible disease!

I had a pituitary tumor. It was only half of a millimeter, but it was wrecking havoc on my entire body! That tumor was removed, and I had a brief remission of 3 months. My symptoms began to reappear, and I started testing for the disease again. I did not have new tumor growth showing on my pituitary, so we took out both of my adrenal glands. That surgery is called a Bilateral Adrenalectomy, or BLA for a shortened version.

I am suppose to be "cured", but when you take out your adrenals, you trade one disease for another. I will forever have Addison's Disease. However, I still have some symptoms of Cushing's Disease, and suspect that I have a bit of rest tissue where my adrenals use to be. Finding that is like finding a needle in a haystack.

I do not regret any of my surgeries. I am better off than I was before my surgeries! I really wondered if I would live long enough to get on the operating table, I was that bad! I felt really good for the first 7 months after my BLA, and made lots of progress. Then it all stopped, and I started gaining weight again. A lot of weight! I put back on 50 lbs. within 4 months! Then it stopped, and I've lost some of that. For quite a while now, I have not felt very good. Each day is a struggle. I don't know what I will feel like from day to day. Some days I feel half way decent, but it can change within hours. Most days I'm very tired, dragging, and no energy at all. I'm pretty sure I have Dysautonomia as well. That is dysfunction of the autonomic nervous system. The problem is, there are not a lot of doctors who diagnose it. The best in the state has a year waiting list to see him and they won't put me on the list until they have all of my records. That's a huge task! I also know that I have Fibromyalgia and Chronic Fatigue.

All in all, I'm still better than I was with Cushing's! I'm just not back to being healthy. I may never be. I've had Cushing's all my life. I believe my mother had it, and we are discovering that my children have it. It looks like it's genetic for us. I don't want my blog to see down and depressed, but I want to be realistic about how Cushing's makes us feel, and all of the aspects we have to deal with when having this disease.

Anyone reading the blog, feel free to ask about certain symptoms, and I'll answer! The whole idea of this is to bring more awareness to the public about this disease!

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