Skip to main content

Tests, tests, and more tests

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.

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!


Comments

Post a Comment

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood.

Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post.

To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer.

In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after return…
Post a Comment
Read more

Cushing's Awareness Day

Over the past 8 years, I have spent a few Aprils blogging every day for Cushing's awareness.  I will not be blogging daily this year, but don't want to let the month go by without spreading some awareness!


April 8th is Cushing's Awareness Day because it is Harvey Cushing's Birthday.  Harvey Cushing is the father of modern neurosurgery, and he also was the first to discover Cushing's Disease in one of his patients.  You can see a drawing of his patient (Minnie G) in many text book articles about Cushing's.

Post a Comment
Read more

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…
4 comments
Read more