I knew I would think of other things that have improved since my bilateral adrenalectomy a year ago.  One thing I thought of today is that I can sit in a standard booth easily now.  I avoided boothes for many years because I couldn't fit in them. 

It's the little things that most folks don't realize which make life so much simpler/easier for me now that I can do them, too.

....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

Postlude:

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.

I saw my PCP this morning. I have a UTI and probable sinus infection; she is treating both. She rocks. She took my AI very seriously.  I called, she said, "How soon can you be here."  It's a thirty minute drive. I was there in 29 minutes.

I had many of the symptoms of adrenal insufficiency leading to a crisis.  Thanks again to my Cushie friends, I did stress dose.  If I had not, I would probably have had a crisis.  I didn't even realize the symptoms.  If I had not stress dosed (twice), I would not have been able to drive.  That means I would have had to call for help. 

It's hard to go from the mindset of "cortisol/hydrocortisone is bad" to "cortisol/hydrocortisone is good".

They finally got my air conditioning fixed at work.  However, it didn't hit 60 today and that thing ran non-stop all day. Since everyone was shivering and cold, I figured my shivering was due to that, too. In fact, I'm sure it was at first, at least.

I came home,... turned on the heat, covered in multiple polar fleece covers, and drank hot tea. But, since being home I cannot get warm. I'm shivering to beat the band. Now, I have a headache and my abdomen hurts . Can shivering cause AI? I did take extra hydro. It hasn't helped a whole lot. And now I have a fever of 101.3.

My Cushing's support group says I probably have an infection.  If I do, I don't know it.

 

My friend, Erella, is having a bilateral adrenalectomy today.  Erella lives in Toronto, Canada, and has had 3 Pituitary surgeries and radiation over a 12 year period. Those have not stopped her Cushing's.I met Erella through the Cushing's Facebook group.  She is amazing.

Erella is talented at too many things for me to cover, but her drawings about Cushing's are awesome.  This one seemed really pertinent today.

Erella, you are in my thoughts and prayers.  Hugs...

Visit Erella's blog where she shows some of her drawings. 

 I bought this a while back and it works great for my homemade drinks.  All  parts are dishwasher safe.

I was craving meatloaf.  Because of recent experiences, I was afraid to make it because I was afraid once I made it, I wouldn't eat it and it would go to waste.  My mother suggested using these pans that I have and freezing individual loaves after baking and cooling it.  She's smart.

I baked my meatloaf, and actually ate most of one loaf.  I wrapped and bagged the rest indiviually to eat when I want it. For some reason, meatloaf tastes good when other meats make me nauseous.  I suspect all the spices, onions, peppers, and oatmeal in it hide the flavor enough for me to eat it. 

I weighed. I hate weighing. Maybe not anymore. I've lost 32 pounds since surgery according to my scales. Did you hear that woo-hoo?

I want to proclaim this a "w00t" day. I had enough energy on a Friday late afternoon to go to the grocery store, bring everything in, and put it up. I am now going to go make shrimp primavera! I am craving it.  I hope I still want it when it's done.*

Pray with me this isn't the w00t before the fall. Last time I bragged, I ended up with adrenal insufficiency at 2 in the morning.

*I did want it, but not a big helping.  I hope it freezes well.

"Hi. Bye. Bed."  I posted this on Facebook to my friends/family when I got home from work.  I slept 6 hours before getting up to take meds and drink some homemade "gatorade". 

Then...back to bed.  Some days are hard.