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I'm sure you are terrified. Don't worry about tyring to be supportive right now. You have given so much already and perhaps you'll never know how much your words have meant. NOW is the time for you to lean on everyone else. That is what this board is all about. When you feel up to it, post for support and I know without a doubt, you will find warm arms waiting to hug you. :)

I read in one of your posts (correct me if I'm wrong), but I think you are in mgmt. I know for myself, it's hard sometimes not to be the one in control and have to ask for help. Don't be afraid b/c you don't have to face this alone. You are in my mind & prayers and I know that goes for a lot of others as well.

Take it one day at a time! :)

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sniff sniff, no one's ever called me "Little C" before. Heck, the last time I was called "Little anything was when I was a Freshman in highschool...

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:update: Well, I thought I would bump this.

I've been testing like a fiend since I got back from OHSU in Portland, and I got a call lastweek from my Endo there. My cortisol level on 6/21 was 214, :( The normal range high is 50 to 80.

So, brain surgery looks like it is going to be in my near future!

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Vines I'm so sorry you will have to go through all this... I'm keeping you in my thoughts and prayers and wishing you through all this quickly!!! (((HUGS))) Better health is on its way... just hang in there and know that you can come here for suport anytime.. we miss you when your not here!!

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So, does the cortisol level indicate that Pitunia turned back on? She had shut down a few weeks ago and you dropped weight...yes? Do I have this right?

Brain surgery...ouch. You need to keep us posted on the details. I think you are going to be just FINE! You have a wonderful future ahead of you and getting rid of this tumor is just the hump you need to get over. You are doing this!!! You are smack dab in the middle of your journey toward a healthy body, mind, and spirit. I'm so happy you are sharing your journey with us. Picture us all just cheering you on! We line the road you are taking, yelling, cheering, crying, jumping with excitement when you need it! Yay Crystal!!!!!!!!! Go, go, go, go!!!!!!!

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WOW... well, if they can get in there and get Pitunia out, you should DEFINATELY have some relief!!

*hugs*

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Yes Kathy, that is exactly what happens! With cyclical Cushing's, also called intermitend, the tumor turns off and on. When it turns on, it puts out cortisol, and when it shuts off, it, well, doesn't.

Right now I seem to be in a two week off and on cycle. I feel myself starting to hit a low, I know, because I'm getting fatigued again and I can see in the dark again. When Pitunia is "on" I cannot see in the dark, to the point where I can't drive at night.

So, now it's turning off again. I just hope that I don't end up with my adrenals shut down, that is frightening indeed. The next few weeks will tell.

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Oh wow I'm sure surgery will go well. Technology is awesone now a days. Believe or not I just saw a segment on Mystery Diagnosis about Cushings, Monday, I think. It is such a rare disease that it is a blessing to just find the diagnosis. You are blessed in having found out what you have it. Good Luck in getting this corrected.

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Vines,

Hang in there! it's very good you're on top of it, always searching, reading and looking for answers. The answer will come and your knowledge and strenght will guide you through this hard path.

Thinking of you and wishing you the best :grouphug:

niki

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I *H A T E* searching for things on the web - toooooooo many choices.

Could you please explain to the weak ones (me!) what cortisol levels mean to the body?

Seems like it would be easy for the 'skilled' to find a brain tumor??

You know Crys., Im sorry that YOU are going though this, but it makes me wonder HOW many others are dealing with similear symptoms and have NO idea what is really going on in their body.

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Crystal~

Please know you're in my thoughts and prayers! And keep us posted on what's happening...we care about you. Don't worry about being supportive to anyone else...let us be supportive of you. What goes around comes around, and you've been there for so many of us...now let us give some of that support back.

Hugs...

Emily

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Picture us all just cheering you on! We line the road you are taking, yelling, cheering, crying, jumping with excitement when you need it! Yay Crystal!!!!!!!!! Go, go, go, go!!!!!!!
Wishing you the best and thinking about you a lot.

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Vines, I am so sorry to hear of this. I haven't been here alot since I moved and I was mostly on a pitty-potty when I was. And here you are worried about being supportive for everyone else.

Take the time you need for yourself and heal. I don't know where you are with school but it seems like you might be close to finishing. Don't overdo yourself.

Hang in there and let us know what we can do to provide you support. Celeste

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