Life with Chronic Illness

I had my post op appointment with my endocrinologist today.  We pretty much got no news.  My 8am cortisol levels for the first 4 days after surgery were a little bit higher than she'd like to see them, but then I had two 24 hr urine tests later in the week that had low cortisol levels.  I had low levels after the first surgery too, so we're going to do some more tests and wait and see.  We discussed what my options were if this surgery turns out to not be a cure for me.  They're a little bit better than I had originally thought, but not ideal.  I would rather not rely on medication and wait for radiation to work or have an adrenalectomy and also be dependent on medication forever.

As far as how I'm feeling, I feel pretty good.  I'm not sleeping well, which could be due to the medication I'm on or because of the Cushing's, it's hard to tell.  I never felt the immediate weight off my shoulders like I did with the last surgery.  I felt so different even a …

No news yet, but I just wanted to thank everyone for all the calls, emails, and texts.  It really means a lot to know how many people out there are rooting for me!  Hopefully things continue to get better and this will be the end of Cushing's for me.  I'm so grateful to have such a great support system.  Happy Valentine's Day everyone!

I had my pituitary surgery Thursday.  We went in at 11 and I was in the PACU by 3.  Total surgery time - 2.5/3 hours.  I was in a different PACU this time, and what a difference!  After the last surgery, I was wheeled into a huge room lined with patients who had just come out of surgery.  No curtains, bright lights, very noisy, and there didn't seem to be enough nurses to go around.  Not the kind of thing that's helpful after someone goes digging around in your head.  I was there for way too long and it was the worst part of the last surgery.

This time, I woke up in a private room, with the lights dimmed, and one nurse who seemed to only have me to worry about.  My bed on the neuro floor wasn't ready, so they brought my parents back to see me here and said I would be there for a while.  It was fine with me!  THe two nurses that took care of me were great, and let me get up to go to the bathroom (which was a nice change from the other PACU).  I quickly realized that I had d…

On February 11th, my tiny tumor will finally be served an eviction notice. No extensions this time :)

I have not been sleeping at night the past couple weeks.  My body has decided to become nocturnal.  That leaves me many hours with nothing to do!  Cushing's causes a loss or disruption of your circadian rhythm, so the excess cortisol at night is keeping me awake, and the lower levels during the day make me tired.

I've been listening to a lot of the interviews on Cushing's Blogtalk Radio, they're all on iTunes.  It's been really interesting to hear other people's stories and doctor's opinions.  Listening to one of the interviews with Kate, who is also has Pituitary Cushing's, she brought up the idea that Cushing's patients are zebras and that makes getting a diagnosis so difficult.

One of the things that people always say in medicine is when you hear hoofbeats, look for horses, not zebras.  Cushing's disease is a zebra.  The symptoms can be explained by any number of other conditions, including diet, lack of exercise, polycystic ovarian disease, th…