My lumps... my lumps... my lovely Cushing’s hump... check it out!

On the left is the picture I kept showing the doctors who told me nothing was wrong with me. On the right was taken 12 days after my left adrenalectomy. So if nothing was wrong... why did removing the tumor(s) and the gland make it disappear?

Cushing’s can cause a dorsocervical fat pad. Mine started showing up years ago, back before I had ever even heard the word Cushing’s. It’s why I wore my hair down for my wedding. I was trying to hide my “Quasimodo hump,” which is a super cute bridal accessory, obviously.

That was also around the time my hormones started going completely feral and my seizures became debilitating. I was having them two, three, sometimes four times a week. My sleep went off the rails. I started developing anxiety and paranoia like I had never experienced before. I started gaining weight out of nowhere. I told my doctor my pee smelled like Fruity Pebbles. She chuckled. I now realize that was probably when my blood sugar started getting wonky, too. She checked my hormones, and they were all out of whack... as in, I basically had none. Not exactly shocking, since I’d had a partial hysterectomy at 34 and that one poor ovary left behind had probably shriveled up like a raisin years ago. She put me on hormone replacements and sent me on my way.

Then we moved cross-country, and my health kept sliding downhill like it had greased wheels. I had chest pain. More seizures. I became diabetic. I developed an enlarged liver from NASH. And I got depressed. Not “having a rough week” depressed. I mean deep, scary, what-is-happening-to-me depressed.

Doctor after doctor laughed at me — yes, literally laughed — told me it was “just menopause” (ummmm... excuse me, been there, done that), or told me to stop being lazy, lose weight, and get a therapist. I researched one of the “best” endocrinologists in the state, waited almost six months to see her, and that was basically her grand medical wisdom. Lose weight. Therapy. Menopause. Cool cool cool.

I went to the Cleveland Clinic because they’re supposed to be one of the best hospitals in the country. I spent thousands of dollars on travel and appointments just to be gaslit and told I was fine. I might have given up if it weren’t for Hannah, the absolutely AMAZING nurse practitioner — I think that’s what she was — who actually saw me and believed me. On that first visit, after we talked through my symptoms, she said, “It sounds like there is adrenal involvement.” So I started researching adrenal issues.

Then one night in the ER, when I thought I was having a heart attack, a CT scan found the adrenal adenoma. They weren’t even concerned about it. But Hannah’s words lit up in my brain like a neon sign. Adrenal involvement. For the first time in a long time, I had hope.

That’s when I went to the Cleveland Clinic... only to be ghosted by the surgeon and the endocrinologist I saw there. The surgeon said he had no reason to remove my tumor, and the endo said it was just menopause, even though my symptoms were NOTHING like menopause. And yes, they literally ghosted me. They still won’t even reply on MyChart.

So I found Dr. Carling.

And pathology proved them all wrong.

Not only does my post-surgery appearance point straight at Cushing’s, but the pathology showed the smaller adenomas they found were producing aldosterone. So, with every ounce of love and rage in my body, I am throwing both middle fingers up to everyone who laughed at me or told me nothing was wrong while I kept getting sicker. Because here I am now — improving every day.

I’m two weeks post-op as of today, and I’m not gonna lie: this second week has been a doozy. The ups and downs are insane. I want off this roller coaster. Yesterday, I cried because I heard the stray cats outside meowing and it made me sad. Then I couldn’t stop. I never cry, y’all. NEVER.

I’m itchy all over. I was sleeping great, but the last few nights have felt like pre-surgery insomnia. Today, my tinnitus is back, and I forgot how much that sucked. I had gotten so used to it before that I didn’t even mention it to doctors. Now I want to punch kittens in the teeth because of it. Not actual kittens. Calm down. Metaphorical tinnitus kittens.

I know this is just my body trying to readjust. My other adrenal gland is trying to remember how to do its job and produce things properly. I know it will probably be like this for months. Right this second, I’m okay with that. I feel optimistic. Later, when I’m crying over feral cats or a commercial or the way a sock touched my foot wrong, I probably won’t be.

But I’m trying to take my friend Rose’s advice. She told me to remember that I’m better today than I was six weeks ago. And you know what? She’s right. I have to keep that in my head.

I’m beyond thankful for that advice. I’m thankful for the people who believed me. I’m thankful for the proof. I’m thankful for the healing, even when it shows up itchy, sleep-deprived, ringing in both ears, and ugly-crying over street cats.

Because I’m still here. I was right about my body. And I’m getting better.

rewritingmytruth.com

Where honesty meets recovery

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H.L. Browning

Writer • Healing Advocate

Rewriting the stories I once survived