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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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    • LeighaTR

      I am new here today... and only two weeks out from my sleeve surgery on the 23rd. I am amazed I have kept my calories down to 467 today so far... that leaves me almost 750 left for dinner and maybe a snack. This is going to be tough for two weeks... but I have to believe I can do it!
      · 0 replies
      1. This update has no replies.
    • Doughgurl

      Hey everyone. I'm new here so I thought I should introduce myself. I am 53y/o and am scheduled for Gastric Bypass on June 25th, 2025. I'm located in San Antonio, Texas. I will be having my surgery in Tiajuana Mexico. I've wanted this for years, but I always had insurance where bariatric procedures were excluded. Finally I am able to afford to pay out of pocket.  I can't wait to get started, and I hope I'm prepared for the initial period of "hell". I know what I have signed up for, but I'm sure the good to come will out way the temporary period of discomfort and feelings of regret. I'd love to find people to talk to who have been through the same procedure or experience before. So I look forward to meeting you all. Hope you have a great week!
      · 2 replies
      1. Selina333

        I'm so happy for you! You are about to change your life. I was so glad to get the sleeve done in Dec. I didn't have feelings of regret overall. And I'm down almost 60 lbs. I do feel a little sad at restaurants. I can barely eat half a kid's meal. I get adults meals often because kid ones don't have the same offerings at times. Then I feel obligated to eat on that until it's gone and that can be days. So the restaurant thing isn't great for me. All the rest is fine by me! I love feeling full with very little. I do wish I could drink when eating. And will sip at the end. Just a strong habit to stop. But I'm working on it! You will do fine! Just keep focused on your desire to be different. Not better or worse. But different. I am happy both ways but my low back doesn't like me that heavy. So I listened (also my feet!). LOL! Update us on your journey! I'm not far from you. I'm in Houston. Good luck and I hope it all goes smoothly! Would love to see pics of the town you go to for this. I've never been there. Neat you will be traveling for this! Enjoy the journey. Take it one day at a time. Sometimes a few hours at a time. Follow all recommendations as best you can. 💗

      2. Doughgurl

        Thank you so much for your well wishes. I am hoping that everything goes easy for me as well. We don't eat out much as it is, so it wont be too bad in that department. Thankfully. Also, I hear you regarding your back and feet!! I'd like to add knees to the list. Killing me as we speak! I'm only 5' so the weight has to go. Too short to carry all this weight. Menopause really did a doosey on me. (😶lol) My daughter also lives in Houston. with her Husband and my 5 grand-littles. I grew up in Beaumont, so I know Houston well, I will be sure to keep in touch and update you on my journey. I may need some advice in the future, or just motivation. Thank You so much for reaching out, I was hoping to connect with someone in the community. I really appreciate it. 💜

    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. LeighaTR

        I hope your surgery on Wednesday goes well. You will be able to do all sorts of new things as you find your new normal after surgery. I don't know this from experience yet, but I am seeing a lot of positive things from people who have had it done. Best of luck!

    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

        Now I have a whole new big, bigger, biggest, best days ever. I am out there with those skinny people doing stuff i could never have dreamt of. Food is now an after thought. It doesn't consume my day. I still enjoy the good home cooked food but I eat smaller portions. I leave food on my plate when I am full. I can no longer hear my mother's voice saying eat it all up, ther are starving children in Africa who would want that!

        I still cook for family feasts, I love cooking. I still do holidays but I have changed from the All inclusive drinking and eating everything everyday kind to Self catering accommodation. This gives me the choice of cooking or eating out as I choose. I rarely drink anymore as I usually travel alone now and I feel I need to keep aware of my surroundings.

        I don't know at what point my life expanded, was it when I lost 100 pounds? Was it when I left my walking stick at home ? Was it when I said yes to an outing instead of finding an excuse to stay home ? i look back at my last five years and wonder how loosing weight has made such a difference. Be ready to amaze yourself.

        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

    • CaseyP1011

      Officially here for a long time, not just a good time💪
      · 0 replies
      1. This update has no replies.
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