Friday, March 21, 2008

I'm a big weaner

I've managed to wean from 60mg of hydrocortisone to 5mg in less than 7 days! Yay! Yippee. Actually I think I could have skipped the 5mg today, but I took it just for the hell of it. One tiny ping in my adrenals and I dropped 5mg, you know, just in case.

Ok, honestly? That isn't good news in the Cushing's world. My body shouldn't be able to compensate for that rapid of a drop in steroids in such a short time. I suppose it means that the source of my Cushing's is finding a way to come back to life. *fingers in ears* LA LA LA LA LA

I saw my primary doctor's assistant today to see if they could order a radiological test to find the source of my leaky brain. They were pretty stumped. I don't want to bug them, but they haven't called me yet. They said they would. I'm afraid he'll drop me as a patient if I keep 'coming down' with questions and problems that they can't deal with. I really like him and his staff; I try to send them goodies for the office whenever they help me through situations like the one I am dealing with. He must really like people with strep or UTIs after my visits. ;)

I made an appointment with an ENT surgeon for Monday, just to cover my bases. Once again, I hope I don't scare the bejeezus out of him and have him send me packing. It was already suggested that I go back to Houston for the leak repair. No. Freaking. Way. is my non-verbalized response.

I know a neurosurgeon in Los Angeles, but I don't think a neurosurgeon is needed for this - more an ENT problem. I think. I don't know. Which brings me to my most recent thought: wouldn't it be nice to just have NORMAL PROBLEMS? How about that osteoarthritis I have in all of my left-side joints. Couldn't that be my only cross to bear? Wouldn't that be nice?!? I try not to talk about my medical issues out loud to normal people any more. I scare them. *ducking*

Wednesday, March 19, 2008

I've had it. Up to my neck, err - brain.

My brain is still leaking. Dammit.

"My brain is leaking! My brain is leaking!"

Friday will mark four weeks since surgery and I am spitting mad that they didn't believe me when I told them I had a leak at the hospital. Sorry, dear city of Houston, I don't think we have a future together. We don't seem to mesh well. ;)

I've tried laying flat on my back every night when I sleep and it isn't helping. Can I just say I deserve a medal for even sleeping like that for one night, let alone four or five? Yes, I do. I've had to resort to sleeping on the couch so that the width of sleeping area discourages my sleeping self from turning.

I'm trying to arrange for the radiological tests to determine the exact location of the drip, and have an appointment with an ENT/surgeon on Monday. There is no way I am going under without them knowing exactly where to stick in a plug. *sigh*

I started the daily growth hormone shots seven days ago. It is really starting to help. Now I can almost actually lift my feet when I walk. Yeehaw!

I'm making an effort to get off of the steroids so that I can start testing again soon. I managed to drop from 60mg of cortef to 20mg in less than five days. *blowing on knuckles, rubbing on chest* Holy wean, Batman! :)

Sunday, March 02, 2008

Life Is But A Dream, Sweetheart

I've had a perfect weekend, and perfect day today. Everything is going so well that I am afraid I'm going to die in my sleep tonight. *blink* Just kidding!

Husband came home last night and cleaned the whole house! He mopped and did other stuff I can't do right now. :)

My mother-in-law came over this morning and watched the girls while I napped. Then our babysitter came over this afternoon and I went out to do my stockpiling. I know I should rest, but honestly being home listening to screeching children tends to be more stressful to me.

I cleaned up at CVS and Ralphs, with free razors and toothpaste and I found lint rollers for freeeeee (after the coupons I happened to have on me) on clearance at Ralphs. My second trip to the grocery store did me in though, as I forgot to get the rabbits their food and veggies and I started bleeding out of my nose. Oopsy. Ok, ok, ok - I'll slow down.

I'm just afraid that this "feeling good" won't last and I want to spend every minute "doing" and "going", because it has been so long since I could. I'll rest tomorrow.

My growth hormone starter kit should be here tomorrow or the next day. I can't wait to start!

Life is rolling along!