Tuesday, December 2, 2008

Almost 15 weeks post op update

I'm going to be 15 weeks post op tomorrow. I went to the ENT and got my scar tissue shaved out of my nose. It wasn't bad, but I'm glad it's behind me!

I called my PCP's office today, and talked to the nurse. I told her I wanted some orders to do some midnight blood draws and some 24 hr. UFC's with 17-OHCS in them. She said unless they called back and told me otherwise, the orders would be sent over to the hospital where I get the draws done. I never heard back, so I'm assuming they are there. Back to testing for me!

Hearing that others have lost 30 lbs. while still on 20 mg. of hydro, and I'm totally off of hydro and not losing anything, makes me think I'm not cured. I'm not jealous at all. I'm thrilled for them! We all have such a battle with this rotten disease, and any good news from any of us is something to celebrate about. I quit the hydro shortly after my 13 week mark. According to my doctor, and I've seen the labs too, all of my hormones are good.

The return of symptoms just keeps adding up. At first, they were more subtle and not very worrisome. Now, they are things I just can't ignore. More symptoms started popping up just in the last few days. My brown spots are getting very dark again. That tells me that my ACTH is high. They had pretty much faded after surgery. I had not really noticd them for a while, and yesterday when I looked in the mirror I about flipped! The one on my lip stood out like a sore thumb!

I hate Cushing's! I had high hopes that I was cured after surgery when I crashed so low. The lack of progress has sunk those hopes. I suppose there is still a slight chance that I do have a cure, but I'm not seeing it right now. I feel like I'm slipping back in time and I want out of this time warp! I really felt cured for a while! It was great while it lasted. I want to feel that again. So, I'll keep pressing on. Maybe my tests will be low, but I have a feeling I will see something otherwise. Time will tell. If I still have Cushing's, I hope I get highs off the bat!

1 comment:

judycolby said...

Oh, Gracie, I feel for you. But you're right - just meet it head on. You sound so much like Jess. I really hope you're wrong but our instincts are usually right.