Was I Crazy? Could I Really Be One of 3 in a Million?

We introduced Patient Worthy’s newest and first Contributor living with Cushing’s Disease in, On a Mission to be Fit and Fabulous, Meet Liz. This is Part 1 of Liz’s official interview.

Part 1 is focused on the symptoms Liz experienced and her feelings during her pre-diagnosis journey.  

” I LOVE TO WORKOUT! That is my biggest hobby- to take care of myself mentally and physically.”

Liz is from Watchung, NJ. She is currently a Personal Trainer and Nutrition Coach, applying to dietetic internships for Fall 2017. Liz loves to workout, and summertime. When describing working out as her hobby Liz said, “I also love to research and read different things related to health and fitness, particularly on the biochemical side.”

Liz, tell us how your journey to diagnosis with Cushing’s Disease began… 

“I didn’t feel right on birth control (started becoming depressed and not sleeping) in the fall of 2012. When I came off BC in April 2013, I didn’t get my period regularly for 1 year, and I gained 25 lbs!

Liz went to her chiropractor for a cortisol and neurotransmitter test in July of 2013. Following seeing two gynecologists towards the end of 2013, Liz was told that she had PCOS. PCOS is Polycystic Ovarian Syndrome, also known as Stein-Leventhal Syndrome, and is one of the most common hormonal endocrine disorders in women with varying symptoms, so it truly didn’t seem that crazy of a diagnosis. Although she was referred to an endocrinologist, she never went because she finally got her period a week before her scheduled appointment.

She was referred to an endocrinologist to rule out hypothalamic causes of her symptoms. Liz was off of birth control, seeing a counselor and began acupuncture therapy. Bi-weekly therapy greatly reduced her symptoms.

As time passed, Liz knew that she was just off

“…Fatigue, sugar cravings, irritability, weight gain particularly in my stomach. Other symptoms were easy bruising and poor wound healing, feeling “tired and wired” at night, having a hard time waking up in the morning, and sweating out BUCKETS during exercise. 50 lbs over my pre-symptom weight, I did another cortisol test through my work at Lifetime Athletic in July 2014, and when I went back to my primary doctor in June of 2015,  

I said, HELP! I AM NOT OKAY!!!

It was like a switch went off. All of a sudden, I was sad all the time.

It took too much effort to get dressed and go to work. 

I worked out because it was my habit, not because I wanted to. 

I couldn’t sleep straight through the night- I would wake up at least twice and was up for hours. I was eating any sugary/carby food that I could get my hands on late at night- it was like my drug to be able to sleep.  

Here I was binging on bad food, having trouble sleeping, no energy, depressed, difficulty exercising– and I was in the middle of a career change from teaching High School, to going back to school for a Nutrition and Dietetics degree and personal training.

I was confused on top of it all, if this was a good idea- I KNEW that in my journey to complete my 2nd BS degree, I would figure myself out. I believe that I had this disease at this particular time for a reason, so that I could not only learn about the body biochemically, but also EXPERIENCE it for myself, so that I can really understand it more, relate to others, and have a unique story.” 

Liz was Living the Blues

Liz felt clueless and frustrated everyday. Out of no where she would lash out at her friends and family. “No one understood what I was going through and I couldn’t explain it. I just wanted to be alone.” No matter how much she prayed, or accepted support, or read, all of her horrible symptoms remained front and center. Liz recalled people actually thinking that she was gaining weight from working out too much. She shut her friends and family out and fell into what she called, “a negative rut that I have never experienced before and couldn’t pull myself out of.” Even at the gym, the place that brought her great memories and happiness, her sanctuary of positive ju-ju, she didn’t feel right.

“Everyone at the gym thought I was a total bitch.”

Liz did plenty of late night reading in bed on her cell. She NEVER EVER thought that she actually had one of these rare diseases she was reading about.  She asked herself though, could I have a brain tumor, and be one of 3 in a million with this disease? No- she told herself. She thought she was CRAZY, and just going through a quarter-life crisis. I mean who doesn’t?

Stay tuned for Part 2 of Liz’s interview, same time tomorrow!

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