Saturday, June 18, 2011

My BLAnniversary

....or my "ReBirthday" as my friend, Nancy, says, was a few days ago on June 16th.  It has been a year since I had both of my adrenal glands removed to control my Cushing's Disease.

How am I?  Perhaps I'll give you a clue by saying I've been too busy to write this post.  In fact, I'm having trouble finding time to blog at all!  So, I am good.  No, I am great!!  I will always have to deal with some of the ravages of Cushing's Disease, but in comparison to what life was like prior to my BLA (bilateral adrenalectomy), I'm SUPERTASTIC!!  

Some of the good things which have happened:
  • I now go up steps most of the time without even thinking about it.  (Going down is still a problem due to a former broken ankle and a bad knee on the same side.)
  • I've lost almost 80 pounds without even trying.
  • Instead of parking in handicapped parking and using a scooter in stores, I can now park in Timbuktoo and walk all over a store.  Wait...I can even tag along with my daughters and walk through multiple parking lots and multiple stores.
  • I have great hopes now of living to be a decent mother and grandmother.  Shoot, maybe even awesome sometimes!  (My first grandchild is due in July!)
  • I don't mind traveling/driving all by myself and do it often.  I've made more trips to see my girls (and hubby/boyfriend) in the past few months than I have in the previous 8 years. 
  • My mental state is beyond awesome.
  • I find myself smiling and singing all the time.
  • I'm umpteen sizes smaller.  (The bad part is all the sagging skin and eyelids.  Maybe that can be fixed in the future.)  I still have quite a bit of weight to lose.
  • I don't dread things anymore. I used to dread getting up, walking, and so much more.
  • I can see my ears when I look into the mirror.
  • I have skinny ankles. Pretty shoes fit again. 
  • I sleep all night, every night.  I go to bed at a normal hour and get up at a normal hour.
I'm sure there are a zillion other things I can write, and I'll think of them later.  There is so much improvement and I notice something every day!

Are there any "cons"?  No, not in my book.  I wouldn't trade my BLA for anything!  Sure, I have to take medication every day to live, but I get to control how much "cortisol" my body gets instead of it controlling me.  I have been fortunate and haven't had a crisis at all.  I haven't had one visit to the emergency department anywhere.   Sure, infections throw me into insufficiency pretty quickly, but the high side of that is I know I have an infection way before most folks would. 

They say a picture is worth a thousand words. I'm going to let these pictures say the rest for me about the cyclic nature of my Cushing's Disease and how long I had it:

Don't I look like a grandma in that last one??? ;)  I don't know what I was thinking with some of those hair styles.

Read more about episodic/cyclic Cushing's: 
High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing ’ s Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing ’ s Syndrome Requires Multiple Testing


Thank you, Dr. M. for finally realizing in 2005 that what I had was endocrine and for sticking with me.  Thank you, Dr. Friedman, for believing me and listening to me, for making me a partner in my health, and for testing me.  You saved my life.  Thank you, Dr. Chiang, for trusting Dr. Friedman and for being the most caring doctor/surgeon I've ever met.  And most of all, thank you Mary O'Connor, for all you do to spread awareness of Cushing's Disease/Syndrome.  You helped me find my life again.  I love you.   I hope all of you see this so you can see what a wonderous work you do.

This would not be complete without thanking my family. My daughters have been my lifeline.  They took two weeks out of their lives and lost vacation time just to take me to surgery and stay with me.  Prior to that, they were here with me when I needed them, helped me do so many things, went with me on trips to see Dr. F, and so much more.  I love you dearly, my daughters, and love the women you are. 

My parents took care of me after surgery, finding any treat they could, cooking anything they could to help me find something I could eat.  They took me for labwork, helped me find DHEA, went to the store at odd hours to get me some gatorade, and so much more.  I love you, Mother and Dad.  And I thank you.

Thanks to all my Cushie folks who support each other.  I'm sorry you have Cushing's, too, but I'm proud to have met you, shared the triumphs and the pain with you, laughed and cried with you.  Hugs.


  1. i Love this so much mom!! I'm so excited that this day is here and you can write this!

  2. Thank you, honey! I am, too! Love you!

  3. I *SO* love a happy ending!

    XO SLF

  4. Dear SLF (I know who you are, but I won't tell!), me, too! XO back!

  5. Seeing all those pictures documenting cyclic Cushing's put tears in my eyes. Reading your "thanks yous" put tears on my cheeks. And I'd like to add one more. Thank, YOU, Robin for passing on the support and information that Mary O'Connor made possible. Your encouragement and example at strategic moments in my journey made all the difference in getting me to recovery. You are one of my heros.

  6. Thank you Robin, this is wonderful. You need to know that in my journey with this same disease, that I would be lost without you. I love you.
    Phil Butler

  7. Nancy, I just paid it forward as I see you doing day after day now. XOXO

    Phil, love you,too. You always make me smile no matter how bad your day and/or how bad mine.

  8. Robin, I'm so glad you're doing SO much better now.

    I remember that picture from 2006, just before your surgery, when me met for the first time.

    I'm also proud to be a small part of your recovery and delighted that you're paying it forward. Others need to see that there is life after Cushing's and you found the way to get there.

    I am so impressed with you and how you willingly share your info and help to others.


  9. I'm so happy you are feeling so well, Robin. It couldn't happen to a nicer person! I'd also like to thank you for all the information, love and support you have given me while we were on this journey together. xoxo

  10. What a wonderful post! Your voice on the Cushing's site was one that early on I felt I could trust for valid, helpful information and as we were traveling the road at approximately the same time, I felt as though I had found a friend and a mentor. Although I don't trust my voice to post as much as some, I follow what is written and want you to know that I have so enjoyed having you to follow in my journey.

  11. Way to go Robin....You are awesome and deserve to be the most wonderful Grandmother!!!

    Thank you for caring so much about many people you have never met outside of cyberspace.

    Love you!!

  12. Whahoooo! This was beautifully written by an equally beautiful lady!....a soon to be foxy grandma too!
    Love ya!

  13. You all are great!!! Melly, I'm so excited about being a grandma!

    Love to all of you!

  14. After my 3rd pituitary surgery wasn't the charm I was hoping for it is looking like a BLA is my way out of Cushing's. To be honest it frightens me. Reading this is like a balm over that fear. Could this really be true? I need to believe it.
    Thank you for this blog and all the information you have put out there throughout the years.

  15. Robin -- thank you for this blog's exactly what i needed to read today ((hugs))



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