And It's About Time There Was Some Support For Cushing's!
Way back when, I was a decent shaped person. Not too skinny, not too fat. I had curves where they belonged. I had energy. I didn't have to shave twice a day. I could bump into things and not bruise. I could squat or screw in a lightbulb. Of course, that all seems like a distant past.
Here is my Cushing's journey.
In 1994 I had my first child, Hunter. He is a delight, just a beautiful, wonderful, kind boy. Shortly after having him, I went back to my normal weight - around 140 pounds. Then I started to gain weight. But, that's easy to attribute to a new lifestyle. I was a stay at home mom who had recently given birth. Of course, now that I pull out the pictures you can see such a difference. After he was born, I looked normal. Then you go to the picture of his first birthday and it looks like I swallowed his old mom. I was so puffy and big. I think I gained around 80 pounds in under a year. At least back then all I had as far as symptoms was the weight gain. The rest of the yucky stuff was still to come.
I distinctly remember moving into our new house in 1997 and looking in the mirror and seeing facial hair. I'd gotten used to the weight and figured that was what my body was meant to be. Being heavy (at this time I was weighing around 180-200) was my lot in life, and there are certainly worse things than being fat. The facial hair freaked me out!
A neighbor suggested PCOS to me. Looked good, so I asked my gynecologist. She said sure, that could be it. So, without any tests, I went on spirolactone (however it's spelled) and birth control pills. Nothing got better.
One day in 1998 I was searching the web for info on PCOS. A link within the article said something about PCOS being just like Cushing's Syndrome. Well, I went to the description of Cushing's and just started shaking. That was ME. More than PCOS ever was.
I found my way to an online support group. I went to doctors. I asked about Cushing's. They all laughed and said one or more of the following:
You're not heavy enough.
You don't look Cushingoid.
You don't have the buffalo hump.
You don't have the stretch marks.
You have strength in your legs (back then I could still squat).
So, I packed away the idea of Cushing's, but still stayed on the board as a silent, albeit feeling fraudulent, reader. I still had it in my head that I had Cushing's, but that must've been the hypochondriac side of me.
Fast forward to May, 2001. I finally was sick and tired of feeling like I did. I was ALWAYS tired, always weak, always shaving, always bruising, always sick. I sent an e-mail to Sue (Suziq on our boards, president of CUSH) and attached a picture and said, "Do I look Cushie?" She sent the e-mail on to several other diagnosed Cushies. They all agreed I did.
So I decided, one last try. At this point I'd seen three endocrinologists, and about seven other doctors.
I got in with a doctor that is pretty well known for ordering any test you want. I got the whole shebang.
Well, as is what always happens, he said everything looked normal. WRONG. I got copies of the tests. My cortisol was moderately high (77). My 17 hydroxysteroids and 17 ketosteroids were very high.
I decided to try and get in with the best doctor in the northwest, Dr. David Cook at OHSU, in Oregon. Through another Cushie, I got in within a week.
Dr. Cook said he was doubtful that I had Cushing's, but it could be. He ran a dex/crh test that showed I *did* have Cushing's.
Told you so.
So, in less than two months I went from no diagnosis to transphenoidal pituitary surgery.
But the story doesn't end there. Turns out that I have a very rare, unusual form of Cushing's. Instead of a tumor, I have ACTH hyperplasia. Instead of a neat little tumor, my ACTH cells are spread all over my pituitary.
Then I had to make another decision. The only ways to treat my form of Cushing's was to either have my entire pituitary removed, have radiation or have both adrenal glands removed.
After six months of soul searching, asking others for help, and praying like I've never prayed before, I decided to have my adrenals out.
Having your adrenals removed is a decision that nobody should ever have to make. The thought of it turns my stomach, to be honest. You are on hormone replacement for life. However, it beat the alternatives. I was lucky to have Lorrie go ahead of me, so I could see if she turned out okay. She did, and with her helpful guidance, I decided to go for it.
On February 5, 2002 (my mom's birthday), I had my adrenals out in a six hour operation. I ended up with 11 tiny little holes to show for it. I had the surgery done laprascopically by Dr. Brett Shepard at OHSU. He is a genius when it comes to this surgery. I woke up in little to no pain. I was released from the hospital in 24 hours. I was on vacation 10 days later.
Since my adrenals have been removed, I've had a few twists and turns.
Learning what dose of medication is right for you and when/how to take it is
part of the learning curve. I had one adrenal crisis that scared me to
death (you can learn about it by clicking the triangle on the bottom of any page that says, "Adrenal crisis?"). Yet every day I feel better and better. Baby steps are what I concentrate on.
I now sleep through the night, I can bump into something without bruising, my face has lost the puffy look. I have lost weight (right now I'm at 140 pounds). My highest Cushing's weight was 222, and I was at 209 when I went into surgery.
If anyone is considering a bilateral adrenalectomy, I would tell them that I'd do it again tomorrow. I have horrible days but I also have extremely wonderful days. And the horrible days are still not as bad as how I felt when I had Cushing's. In fact, I never knew how bad I felt with Cushing's until I was on this side of it. Life has never been better, and I appreciate good health now much more than I ever would have without having Cushing's.
I'm glad I went through Cushing's, when it's all said and done. It made me a more compassionate, caring person. Some of us don't learn life's lessons until we're smacked upside the head with them. I've learned. I will never take for granted a day that God has given me. I will always value, respect, and love my family and friends. Without them and the support from this board, I wouldn't have made it though to be the new person I am now. Some of us are very lucky people in this life, and I credit my experience with Cushing's for shaping me into the person I am now.
Shauna's photos. Click any thumbnail to view the larger image.
With family (mom, grandma and Carley) December 2001, two months before BLA [Photographer: Shauna's family]