September 5, 2001

Woke up this morning with a feeling of utter hopelessness and fear. I have decided that I need to get “more irons in the fire.” Lately I find myself experiencing fear. I am very very afraid that I will be undiagnosed for the remainder of my life. I am also very afraid that what ever is causing these symptoms will also cause permanent damage to my body.

I pulled my thoughts together at 2:30 AM this morning, which is a very difficult task at the best of times and emailed the National Institute of Health. I sent them a short history and my symptom list.

Imagine my surprise when I had a reply back by 8:15 AM my time. The note I got from the National Institutes of Health reads as follows: “Thank you for your inquiry. Your recent email message has reached the Patient Recruitment and Public Liaison Office of the National Institutes of Health Clinical Centre in Bethesda, M.D. Our office provides information about how to become a participant in the research studies conducted at the NIH Clinical Center in Bethesda, M.D. As it was suggested that you may have a form of Cushing’s (their words not mine!) we are forwarding this email to the investigators for that condition. Someone from their team will be in touch with you.”

It took me all morning to get over the shock of actually getting an email from them. You see by now I am a full-fledged pessimist.

At 12:35 PM today, I received an email from a nurse practitioner at NIH. This was almost too much good news in one day! The email reads as follows, “Hello, I am a nurse practitioner who works with several endocrine physicians at the National Institute of Health and we have received your inquiry from the patient recruitment office. In order to determine if you are eligible for an evaluation at NIH, please arrange to have a copy of the films of the adrenal CT scan as well as copies of lab results for the ACTH level and urine cortisol results sent to the address below. If you have a summary letter from the endocrinologist involved in your medical care, please forward that as well. We look forward to hearing from you.”

I will call the hospital today and have them forward my CT scans. I have grave concerns about sending copies of the summary letters from Blonde Bimbo, Leprechaun and Supercilious. As far as these three so called top endocrinologists are concerned there is nothing wrong but a little depression and a lot of fat. Oh yes, I forgot that they are also including menopause in the mix.

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