Life with Chronic Illness

This isn't fair has been the theme of the week.  I had a high 24hr urine, which is great because I still feel like I have Cushing's, but it also sucks, because it means I still have Cushing's.  I thought by now I would be done with everything, but instead we are starting all over again.  The past week has been interesting.  My body has rejected a semi-normal sleeping pattern in favor of staying up until 6 or 7 in the morning and sleeping all day.  I've been trying not to make the cycle worse by making myself get up at 11 or 12, but I definitely need more sleep than that!  I've been exhausted but unable to sleep. So because I still have Cushing's, I have some options.  I'm not really a huge fan of any of them though. 1. Radiation.  I could elect to have radiation to try and "kill" the tumor.  This risks damaging the normal pituitary gland and could take up to a year to work, if it works at all.  I can't wait a whole year for something to work, I

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 pret

Today I saw my neuroendocrinologist and my neurosurgeon.  After going over my test results for the last 3 weeks, we decided that a second surgery is probably the way to go at this point.  I am overwhelmed by all of this, but a little bit relieved too.  I have noticed the last week especially that I feel worse than I did before the surgery as far as my Cushing's symptoms go.  I have had high blood pressure, more weight gain, swelling, and I haven't been sleeping at night.  All of these symptoms seemed to be enough information for the doctors to go ahead with the surgery before we get the next results.  It's nice to know that I'm not fighting for a diagnosis anymore! My surgery is set for January 28th as of right now, and as soon as we have an updated MRI and some more test results we'll be good to go.

So I had my first post-op appointment today with my Neuroendocrinologist. I went in expecting bad news - I've had a bad feeling that something isn't right the last few days. I had a dream last week that the pathology of the tumor came back negative, meaning they didn't take the tumor out. I brushed it off, because I tend to think worst case scenario, but it turns out I was onto something. My endocrinologist said that the neurosurgeon was very pessimistic about the first surgery being a cure. He had trouble seeing a defined tumor in the gland, and he took out a piece of questionable tissue that turned out to be nothing significant, so that means the tumor is still there. The weight loss after surgery was probably due to disturbing the tumor enough so that it shut off, but now the tumor is recovering from the trauma of surgery and is working again. My legs are swollen, my face is puffy, and I've put back on 7 of the 11 lbs I had lost. My blood pressure was high and