Hoping for Experience

I have yet another endocrinologist appointment tomorrow and I am hoping this one has some experience with people who have had pituitary tumors. Apparently I should be tested at least monthly for cortisol levels according to my fellow pit tumor surgery friends - regardless of my steroids use to survive. I have more than 130 pages of medical history to review from the past year and I hope she is smart and kind enough to listen. It would be nice to know some medical professional gets that Cushing's is not over once you have surgery.

Cushing's is over once you get your life back. it's not okay with me to live on drugs to be healthy for the rest of my life...I know there are side effects. I am glad to have them but don't want to rely on them forever. Being chemically dependant was a risk of this disease and one I understand but to automatically assume that a patient needs drugs to survive is not practicing medicine! Eventually parts of me are supposed to return to normal and drug-free. I'm a fighter and don't plan on quitting until I get my life back. We need to try to get me off these drugs so that I can go back to work and start doing some of the things that used to occupy my time. I can't wait to go for my first run!

Don't get me wrong, these drugs have saved my life in more way than one. But, I hate the dopey feelings and side effects they cause. The need to take something for pain and then because that makes you have severe insomnia causing me to take yet another pill drives me insane. Half the pills I take are to combate the side effects of the pills I need. Sometimes I wonder if it would be worse to not take them. I know in reality I can't come off them and do need them, but a girl can dream. Swallowing a dozen pills every six hours isn't the most attractive thing. It grosses me out, I can't imagine being the people around me!

And I know many of you think it is vanity to worry about the weight I gained while on Cushing's but it is not! It is a matter of self identity. I can't wear the same style clothes or do many of the things I would in my old body. And while I am thankful to have a body at all to live in, I can't help but be saddened by the fact my brain still sees the old me and causes strange reactions when I look in the mirror. I look in the mirror and think sometimes I will see the old "me" but then my brain gets jolted when it sees the Cushie. I do a double-take. It's hard to explain but I still do not look like me in body or in clothing and won't until I can get off these drugs...damn steroids!

Anyway, I just hope she tries to do the right thing tomorrow...