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MaryO

~Chief Cushie~
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Status Replies posted by MaryO

  1. Still over weight  but doing ok.... Can't control my sweating nor my weight. Very tired in the morning. Good to see everyone! 

    1. MaryO

      MaryO

      Good to see you, too :)

      I still have some of my pre-op symptoms, too, but I'm still way better than before.

      Slowly but surely, I guess.

       

  2. Mary,

    i am trying to do the bio.

    how do i amend it or update it...i am diagnosed and i did get tests back that it says i didn't.

    i'm having trouble doing this and also posting any pics.

    I want to get this all organized and i also don't see my drs name that i put in the bio.

    thanks,

    Lili

    1. MaryO

      MaryO

      I have your doctor's info for the Helpful Doctor's list but haven't had a chance to format it yet for the list.  Sorry :(

      You can amend or update your bio by using the same form - https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/ - and checking the box  "Is this an update to a past bio?"

      When you check yes, a box will pop up to enter the URL of your bio.  In your case, you'd enter https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

  3. I'm having to rebuild the Cushing's Member Map from old info and the newer bios that are coming in.  Find the new MemberMap here

    Add your information - or your doctor's - at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/

    1. MaryO

      MaryO

      I think I'm nearly half done with the rebuild :)

      New entries always welcome!

  4. HI EVERYONE I AM NEW HERE. BUT I AM NOT NEW TO CUSHING,S. BEEN SICK FOR MANY MANY YEASRS. I CAN NOT GET HELP HERE WHER I LIVE IN SMALL TOWN NOVA SCOTIA CANADA. THANKS FOR BEING HERE FOR ME.

     

    1. MaryO

      MaryO

      Manship, why don't you ask on the actual message boards for help with finding a doctor in Nova Scotia?  

      Canadian doctors are listed here: http://cushings.invisionzone.com/forum/237-canada/

  5. Yes, You Need a Medical Alert Bracelet!

     

    #3 DO NOT MAKE IT “PRETTY” OR “NOT SO OBVIOUS”. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them… THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isn’t obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.

    Read more at https://cushieblog.com/2017/07/18/yes-you-need-a-medical-alert-bracelet/

    1. MaryO

      MaryO

      How scary!  I'll have to remember to take a letter with me if I go out of the country again.

      I also have a letter for my growth hormone to be able to travel with needles and such.  I should probably get that translated, as well.

      Thanks - I'm glad your situation worked out ok in the end!

    2. (See 1 other reply to this status update)

  6. I have not been on these boards in a few years. My status is stable and now on daily Cortef replacement due to stressful divorce, hypothyroid, hypopituitary....God Bless Dr F. who keeps me living my best quality of life. I never thought every day would be a new science experiment....but.....at least I'm 18 years post adrenalectomy / coma and 10 years post thyroidectomy and still enjoying life and family! Thank you Mary for these boards which back in 2000 were the only source of support and education there was for a patient like me. I joined them in 2000 and again in 2004. I will always be grateful for the sense of normalcy and belonging I found on this web site. I work from home now and have a great life! To all of you just starting the journey......DONT GIVE UP....LIFE IS WORTH LIVING AND YOU MATTER...With the right Drs on your team and these boards you can live your best life. Educate yourself and be proactive. Be strong and please don't be afraid to ask questions or ask for help......Blessings Lynn in Oregon 

    1. MaryO

      MaryO

      Thanks so much for sharing your success story, Lynn!  These are always so good to hear :)

  7. Just a personal update to keep track of things.

    As far as testing for PCOS goes I had an ultrasound of my pelvic area yesterday, and some blood tests (various ovarian/pituitary hormones plus vitamin D) this morning. Will wait for results and see what my GP says soon hopefully!

    1. MaryO

      MaryO

      That's great!  

      I hope you get some good answers.  Cushing's can (often, but not always) be such a waiting game :( 

    2. (See 3 other replies to this status update)

  8. Just a personal update to keep track of things.

    As far as testing for PCOS goes I had an ultrasound of my pelvic area yesterday, and some blood tests (various ovarian/pituitary hormones plus vitamin D) this morning. Will wait for results and see what my GP says soon hopefully!

  9. Just a personal update to keep track of things.

    As far as testing for PCOS goes I had an ultrasound of my pelvic area yesterday, and some blood tests (various ovarian/pituitary hormones plus vitamin D) this morning. Will wait for results and see what my GP says soon hopefully!

    1. MaryO

      MaryO

      Hopefully, there will be good news for you!

    2. (See 3 other replies to this status update)

  10. I'm very new to this site, but one of the first things I did was read through your story. It's inspiring to see how many people's lives you touched, and heartbreaking to read through what happened during your last few months. I hope you are at peace, and I wish you a very happy birthday!

    1. MaryO

      MaryO

      Thank you for this, Jasminesky.  Sue was indeed a very special person who touched everyone she met.  I miss her all the time.

  11. I would like to set up a date to speak with you on your show and perhaps doctors as welk

    1. MaryO

      MaryO

      I'm so sorry - I just saw this, Crystal.

  12. Not sure how this profil feed works, but I thought I would make a post... I am post 5 months post pit surgery and 1month post gamma knife radiation. I had 7mm residual tumor in my cavernous sinus cavity. Still having all symptoms but, they told me it would be slow. Slow is ok just as long as its a cure.

    1. MaryO

      MaryO

      Congratulations! The gamma knife can take up to a year before you see any changes, so you need to be patient. Hope you feel better sooner than that!

  13. Hello All! Feeling great today just the darn bloody nose, but March is approaching and I will hit my 1 Year Post Op!

    1. MaryO

      MaryO

      Happy upcoming 1 year anniversary, Sofia :)

  14. is feeling very rough today

    1. MaryO

      MaryO

      I hope you're feeling MUCH better by now, Michelle. (((Hugs)))

  15. New endo today...des test tonight...hm...

  16. Stop with the bikini pics. It's nice to love yourself, but this is ridiculous. @KimKardashian

    1. MaryO

      MaryO

      Gee, I'm glad I didn't see those! LOL

  17. Neuro surgeon says my girl is in full remission ...*tears of joy :)

  18. Getting back into the swing today. Cardiac rehab, Ryan has school, and then swimming lessons. Should be a busy, busy day, which is a good thing. I feel better than yesterday thank goodness!

    1. MaryO

      MaryO

      Sounds tiring - I hope it's going well!

  19. Nap time and then it's Easter Egg Hunt time!!

  20. I now lost 22 lbs and Growth Hormone is wonderful for me. I feel so much better.

  21. Merry Christmas to my family here on the site. Thank you to all of you and I hope we all continue to endure together.

    1. MaryO

      MaryO

      Thanks, Mae. I hope you had a merry Christmas, too.

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