Welcome
Welcome to Should Have Seen It. This is a place where I can come and talk. A place where I can share my journey. I want people to know that even when things aren't always going right in your life, there is still good to been seen and experienced.
I have been living with Cushing's Disease for years. It is a tumor, in the brain in my case, that wrecks the systems of the body. It is a curable disease, in most cases. The problem is that the cure is as hard to get as the diagnosis is. Sometimes it takes drastic surgeries and more than one. I had the brain tumor removed in late 2007. I had a few months remission and it came back.
This Friday, on January 30th, I am headed once again out of state to surgery. This time, they will remove my adrenals also known as a BLA. The BLA is a way to cure Cushing's, but in an extreme way. I am not a candidate for gamma knife because the brain tumor has spread like the roots of a tree. I did Keto (its a dual use drug that has antifungal/chemotherapy uses) that helped keep it in check. It looked like it might have started damaging the liver, which is totally reversible if it did.
I will trade Cushing's Disease for Addison's Disease. Cushing's is not manageable. Addison's, we are told, is no picnic, but it is manageable with medication. I can live a long full active life with it. The surgery is the cure for Cushing's for my case. The recovery will take years and we realize that I may not get back to 100% of what I was. That is ok, we accept that. I look forward to a life that is Cushing's free.
I have been living with Cushing's Disease for years. It is a tumor, in the brain in my case, that wrecks the systems of the body. It is a curable disease, in most cases. The problem is that the cure is as hard to get as the diagnosis is. Sometimes it takes drastic surgeries and more than one. I had the brain tumor removed in late 2007. I had a few months remission and it came back.
This Friday, on January 30th, I am headed once again out of state to surgery. This time, they will remove my adrenals also known as a BLA. The BLA is a way to cure Cushing's, but in an extreme way. I am not a candidate for gamma knife because the brain tumor has spread like the roots of a tree. I did Keto (its a dual use drug that has antifungal/chemotherapy uses) that helped keep it in check. It looked like it might have started damaging the liver, which is totally reversible if it did.
I will trade Cushing's Disease for Addison's Disease. Cushing's is not manageable. Addison's, we are told, is no picnic, but it is manageable with medication. I can live a long full active life with it. The surgery is the cure for Cushing's for my case. The recovery will take years and we realize that I may not get back to 100% of what I was. That is ok, we accept that. I look forward to a life that is Cushing's free.
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