Dying to get well

When I worry about me, I am less useful to all of the other people in my life. Please forgive me, but for the moment, I am worried about me.
I have Cushings Disease. It's a bizarre little disease that affects about 15 out of every million people. From what I've read, the life expectancy of someone with untreated Cushings disease is about five years. I am being treated, but apparently not very well. January 20, 2004, I had pituitary surgery. There was a 1.5cm fluid-filled cyst on my pituitary gland. This fascinating little gland is right behind the bridge of your nose. An Ear-Nose-Throat doctor made an incision between my upper lip and gum, and a pathway to the pituitary gland up through my sinuses. Then, a neurosurgeon went in with a tiny little camera and drained the pituitary cyst. Apparently that didn't do what it was supposed to do. Your pituitary gland, among other things, produces ACTH. ACTH is a messenger that tells your adrenal glands (located on top of each kidney) to produce the steroid cortisol. If you've seen people who are being treated for various illnesses with cortisol, you'll notice they become quite puffy. I have passed puffy, and am just, uh, BOVINE. Try strapping a king-sized pillow around your middle with duct tape and go through an average day. It's difficult to drive, to tie your shoes, and even to make love.
Since the surgery didn't work, I went through five weeks of radiation on my head. Yep, every day for five weeks, I had a mask put over my face, they bolted the mask to a table, and for 10 minutes or so they zapped my pituitary with radiation.
Every few months I get to pee in a bottle for 24 hours, and have multiple blood draws for a variety of tests. My tests show that 16 months after surgery, and 12 months after radiation, I'm not getting any better. You might guess my bank account is less than healthy, too. Hmmm. No stress there.
My doctor now tells me I get to have another MRI. The open MRIs aren't great for head scans, so I get to fit this enormous body into that little tube again and let it take more pictures of my head. If the MRI doesn't show a change in the pituitary, she wants me to go to Chicago to go through the surgery again - this time to remove the pituitary completely.
Dangerous? I think so. It's damn close to my optic nerve. Damage to the optic nerve (what if my surgeon needs to sneeze while he's picking around in there) means I don't get to see any more. I hurt in every joint, I am constantly tired (because of the high cortisol I don't get much sleep, so it's understandable that I am so tired), I have no strength, I take eight prescription medications a day (yet more of a dent in my bank account), and on the off chance I live for another 22 years, I still won't be able to afford to retire. Ever.
And after sharing all of this, the only thing I can think about is how whiny this must sound. But if anyone sees this, it might help to offer up a prayer asking for ways to help me cope with this.