Cushing’s Recovery: Here We Go Again

I recently moved up to Seattle and you know what goes along with moving to a new place - finding a new doctor. UUGGGGG.

The doctor I met today will be my primary care physician - not my endocrinologist. My endo is still in Portland and I wouldn’t trade her for ANYTHING. Yes, I’m going to drive 2 1/2 hours for monthly check-ups. You know how it goes when you meet a new doctor - ‘Excuse me, can you fill out your medical history on these forms’ . Once you look at the forms, you see that there’s only one teeny tiny line for previous illness or surgery. And you think to yourself, crap, I’m going to have to explain my history ALL OVER again. Bring on the questions and scrutiny.

Have you ever felt like you’ve had to convince a doctor of your symptoms to justify why this and why that? Story of my life. Today I was lucky to meet a doctor who openly admitted she didn’t have any experience with Cushing’s beyond her textbook years ago. I thought, Ok points for honesty.

We went thru my history of Cushing’s, starting with when I began noticing symptoms to my current state of recovery. At at a couple of points during our conversation, I felt a little defensive - like I had to justify my symptoms. Those of you who have had a serious illness know what I’m talking about.

I think the most frustrating is that my body has changed all that much yet. I’ve starting loosing the hump on the back of my neck and my face has slimmed down quite a bit (but still has a little way to go). I’m still on a small does of prednisone and for what ever reason, the rest of my body just won’t let go of the weight. Steroids - I’m telling you, they’re a curse.

So I get the laundry list of questions Are you exercising? Are you eating well? What are you eating? All the while, looking at me with this look that says, sure ya do honey. And I just want to scream YES I AM. Well, actually I have a king size Snickers bar in my purse that I’m going to devour when you leave the room and guess what, I have a whole bag of cookies waiting for me in my car. RARRR Did you know that if I didn’t eat anything, I mean NOTHING, I’d STILL look this way? How’s about you try that one on for size. Well, such is life.

Good news is this doctor is only my primary physician, not my endocrinologist.

We Cushies are not alone in these struggles to be understood. Robin who is also a Cushing’s survivor, shared a video on her blog today about getting the word out about the symptoms of Cushing’s. Thanks Robin and let’s keep talking about Cushing’s.

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