Day For Night

Do you see what time I am posting this? Yes, I am up that late. My heart is pounding, my chest hurts and I am WIDE AWAKE! The last week, I probably have slept less than 10 hrs. I cycle really hard, and seem to do it randomly, although I am just starting to figure all this out. When I THOUGHT I had figured this out, I was awake at night, starting about 8pm, until 2am or so, and tired all day. This week? It was like my adernals said, "HOLD UP! Lets throw him for a loop!" This week, I have been at least fairly wired durring the day (and except for the brain fog and innatentiveness, it was mostly great. One day was really painful, but ok otherwise), then would go into a lull around 6pm until close to 9pm. Then the high started until 2am! Couldnt sleep well from 2am-6am then it was time to get up. I probably got up every hour each night.

Then today, I got to sleep in (well, I mean Saturday)!

I was able to fall asleep around 3am, and slept preaty badly until 5:30am. Then it was nightmares (not usual for me to dream) until I woke in a panic at 9:45! My chest already hurt, pulse was high, and I was already angry. I was ticked off all teh way until 1:30pm, when my low started. I had to run errands till 3:00 pm, at which point, I passed out for a few hours.

Now Im up again. I *LOVE* not sleeping! At least I had something construtive to do earliler. And the rest of my time has been spent wondering why my ice machine hates me! I cant function in this world like this anymore! I need to get a diagnosis soon.

Speaking of: I got my first UFC back early Friday morning (yep, was up when I got the email at 3am). It shows I have Cushing's. I emailed the endocrinologist I saw, since I dont have his number, and have not heard from him yet. And I called the Swedish institute and am waiting on a call from them and a couple of studys. Not if we can my wife on the same road to a DX! Getting sleepy finally so G-Night!


Anonymous said...

Hi Weary Zebra,
I just found your blog and have begun to read it. I'm trying to read all the posts in order, but I wanted to stop here to thank you for taking the time to make this blog for others to read and to learn about Cushing's. I just got my diagnosis last month. I've been sick for ten years. The doctors didn't find what was wrong with me, I did. I live in Mexico and so I'm able to walk into a lab and order any test I want without having to beg a doctor to order it for me. I got the Urine Free Cortisol (too high), and a morning ACTH test (too high), messed up thyroid hormones (all too low), and then I finally got an MRI that showed a 5mm by 6mm tumor on the pituitary. I'm thinking of also getting a CT scan of the adrenals. I'm trying to find a neurosurgeon in the US to do my surgery and it's a little complicated to get surgery there since I don't live in the US, but I am a US citizen so at least I can travel there for surgery, but my husband can't because he can't get a visa (he's Mexican). I am really glad I found your blog. I cry to read of what you have been going through all your life. I also believe that my son has Cushing's, probably since he was about 15. He's 34 now and looks just like you. You remind me of him a lot. I tried to tell him that he has Cushing's but he doesn't want to believe it. All his life his father has told him he was fat and lazy but I know he's not. He has the purple stretch marks on his stomach and he weighs 310 now. My heart breaks for him, for you, and for your wife, and all the people who don't even know they have this disease and have had to endure all the physical pain and the mean ugly way the world treats them for the way they look. Thank you Weary Zebra. I've also been looking at your videos on youtube. God bless you and your wife.

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