The Journey to My Cushing’s Diagnosis: The End Was Just the Beginning

Ellijahna Victoria. 27. Former journalist. Writer. Media adviser. Cushing’s survivor.

Wait, what?

Describing myself as a Cushing’s survivor still feels weird. This wasn’t how my story was supposed to go. But of course, that’s life — things don’t always go as planned.

My storm began in late 2015. Back then, I was a budding young journalist with dreams of becoming a TV reporter. I was once told that to make it in the industry, one had to look polished at all times. So I took care of myself. I cut my hair to a “professional” length like the female anchors I idolized, I always wore makeup outside the house, I always dressed nicely, and I followed a clean eating diet and exercised regularly to maintain my size 8 frame.

Life was on track — until one day I noticed I’d gained weight and lost muscle, despite my efforts at the gym. One kilogram (about 2.2 pounds) became 5, and then 10. Before I knew it, I had gained more than 35 kg, or about 77 pounds, within 18 months.

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My midsection blew up to the point where people were offering me their seats on the train because they thought I was heavily pregnant. I had dark purple stretch marks all over my body, my face took on a moon shape, and I was growing a “buffalo hump” on my upper back.

If that wasn’t bad enough, I also looked like a balding chipmunk. I was losing hair on my head but gaining (so much) hair on my face. I learned how to use a razor on my face because I had to shave every day. Some mornings, it would get to be too much, and after inspecting my chin and neck, I would burst into tears, annoyed at my hair follicles for pushing out those hairs so fast.

I became so self-conscious of how my body had changed that I avoided looking into mirrors. I hated the camera, and being on camera. As my self-confidence dwindled away, so did my dreams of ever going on TV.

Perhaps God was trying to teach me a lesson about vanity, I would ponder. By the end of 2016, I was at the peak of my Cushing’s, weighing in at 98 kg, or about 216 pounds. I was 23 years old and, unbeknownst to me at the time, had type 2 diabetes, stage 4 hypertension, a fatty liver that was twice the size it should have been, high cholesterol, and perimenopausal symptoms — no periods, hot flashes, the works.

A comparison of Ellijahna pre-Cushing’s, left, and during Cushing’s. She gained more than 35 kg, or about 77 pounds, in 18 months. (Courtesy of Ellijahna Victoria)

Before my diagnosis, I saw several doctors about the increasing facial hair and weight gain. I was eventually diagnosed with polycystic ovary syndrome; little did the doctors know it was a byproduct of Cushing’s.

My hormones raged and my symptoms grew worse, but it wasn’t until November 2016 that my doctor, by chance, discovered I had severe high blood pressure. I had gone to my general practitioner for a check-up, and during the consultation my hands started to tingle. He checked my blood pressure and nearly fell off his seat. It was 200/120 mm Hg — well above the normal range.

I was referred to a cardiologist, who then referred me to an endocrinologist. And after many, many tests, I finally got the answer I was looking for: I had Cushing’s disease. By this point, I was on a cocktail of eight pills a day to help me function.

When the day finally arrived to remove the 0.5-mm tumor from my pituitary gland, I remember thinking, “This is it.” I went to sleep, and surgeons went up my nose, drilled into my skull, and removed the tumor that had hidden itself so well.

Three hours later, I woke up only to be told my cortisol levels were still high. A few days later, doctors confirmed that the operation was unsuccessful and I’d likely need a second surgery. I felt betrayed by my body. I had to wait 18 months before I went under the knife again and finally heard the words, “The Cushing’s is gone. You are in remission.”

It has taken me the better part of seven years to see the silver lining of experiencing something so painful. Seven years of losing myself, finding myself, healing, and learning to embrace the battle scars I carry.

They say everything happens for a reason, but when you’re in the middle of a storm, it doesn’t feel that way. In retrospect, I know now that going through this was a gift. Cushing’s disease could have destroyed me, but it didn’t. It gave me the strength to help others in a similar boat make sense out of the senseless.

Never in my wildest dreams would I have imagined calling an online community of Cushing’s warriors family, but that’s life: unpredictable and unfair, but incredible, because I now have the opportunity to share this journey with you all.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.