I will need to have a second surgery sometime in the near future, but before they will schedule it I need to prove that I still have Cushing's by testing some more. This means daily midnight salivary tests and a couple 24 hour urine tests. The salivary tests are nice because they are quick and easy, but they are NOT fun! You have to chew on a cotton tube for 3-5 minutes. I've probably done at least 50 by now and still can't do it without gagging the whole time! The urine tests are a pain, but for me they have been the best diagnostic test.
To make sure I test when my cortisol levels are highest, I've started tracking my symptoms the last few weeks. The week after surgery, when I felt like I had been cured, I realized what having low cortisol felt like. It's now crystal clear to me what my highs and lows are. I had cyclical cushing's for probably 10 years, and I realize NOW that I was always testing when I had low cortisol because I felt worse! I am pretty sure that I'm cycling again, which can make diagnosis difficult to say the last. Last time it took 4 years. Right now I've had a couple low days in a row, so I'm still waiting for a high to do some more tests and get this surgery on the books.
To make sure I test when my cortisol levels are highest, I've started tracking my symptoms the last few weeks. The week after surgery, when I felt like I had been cured, I realized what having low cortisol felt like. It's now crystal clear to me what my highs and lows are. I had cyclical cushing's for probably 10 years, and I realize NOW that I was always testing when I had low cortisol because I felt worse! I am pretty sure that I'm cycling again, which can make diagnosis difficult to say the last. Last time it took 4 years. Right now I've had a couple low days in a row, so I'm still waiting for a high to do some more tests and get this surgery on the books.
I'm really anxious to get it all over with at this point. I've kept busy the past month that I've been post-op and out of work, and the last week or so I've really had a hard time coming to terms with the fact that this isn't over yet. I was so relieved to finally get a diagnosis and remember saying right before they wheeled me into surgery "This seems too easy!" I must've jinxed myself :) Nothing is ever that easy when it comes to my health! I had such high hopes that by the end of January I would be back at work and on the way to feeling normal again, whatever that is. Unfortunately I am right back where we started. Waiting for test results!
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