I am fairly sick right now, so I thought I would add a series of posts that I originally published on my personal blog. The posts were entitled "Redefining Myself" because that has had a lot to do with this journey. So far, I have had to deal with the emergency room twice with this disease/disorder and found that since it is a rare disease, I had to do a lot of advocacy and education. Luckily, CARES, which is the support organization for this sent me an emergency card that details my special needs. It has been 5 weeks since my diagnosis. Now, on to the original:
"According to the stim test results, you have a condition known as Congenital Adrenal Hyperplasia."
Delivered in my endocrinologist's lilting French-African accent, these words sounded so innocuous. She really didn't explain it, except in biological terms. I knew when I walked out what was happening in my body that told her the diagnosis, and the treatment course. Six weeks of dexamethasone and spironolactone, then after a blood test to confirm improvement, dropping the spironolactone and increasing the dexamethasone. This did not prepare me for what it actually meant. It did not prepare me for the changes that would come into my life, or the emotional maelstrom I would face.
Being a good patient and internet junkie, I came home and looked up the diagnosis. I read, and I read, and I read. When I was referred to the endocrinologist, I thought we were just going to treat my Polycystic Ovary Syndrome (PCOS). I was continuing to gain weight even though I ate normally and I am fairly active. I did not feel particularly sick.
When she ordered the ACTH Stimulation Test, I was complacent, not really sure what she was looking for, even though I did look it up. The test was an extremely painful experience, and made me feel sick the rest of the day. I was bruised and battered (I am a difficult blood draw) and wasn't sure if this all was really necessary.
Now, as I read through the material, I opened my eyes to what this really meant. I received a good education in the endocrine system that day. Words like 21-hydroxylase deficiency and 17OH-pregnenolone floated before my eyes.
Now what does this mean to me? That will be continued soon, because it is time to get children from school.
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