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Nancy H's Story

My name is Nancy and I decided to share my story as a way of acknowledging that all of "this" has been real. I am writing at 3 weeks post-op.

All my life I've had major obsessions with weight, diet, food and exercise. So in the beginning (of my illness) I was oblivious to all symptoms except the weight gain. I started gaining weight around the age of 36. The weight came on even though I had not changed my diet or exercise routine(I jogged regularly & ate hardily but also with care). The doctor checked my thyroid several times. All the tests were negative - and I was told to "diet." Over and over I was told to diet. I had no idea what was going on. I only knew I felt confused and betrayed by my body. If I starved my self, I gained weight... if I ate I gained weight. Other things didn't seem right; my husband and I wanted a family but I couldn't get pregnant (more tests and doctors). I became depressed and lethargic. I stopped working out and started drinking. A few (too many) beers in the evening helped me forget what I couldn't understand. I was so low, so sad and so confused about what was happening.

Soon my drinking escalated to the point of needing rehab and then recovery (another story). Recovery was difficult and scary - and it forced me pay attention to my feelings and what was going on with my body. I ached all over, I had no energy, I was depressed, I just kept getting fatter and fatter and I wasn't menstruating. I felt sick but I couldn't put words to it.

So, I started with the gynecologist. She ran tests. My Prolactin level was very high and she couldn't understand why. I believe she only sent me for an MRI because she was out of ideas. The MRI showed a small tumor on the pituitary. I had a quick appointment with an endocrinologist who said "we'll watch it" and "you don't look cushionoid." I had never heard that word before... but after a few hours on the Internet back at home I was shaking my head and feeling angry. My face was big and round. My back was humped. I was carrying a "new" unwanted 100 plus pounds, etc, etc... but I guess that I was dismissed because I wasn't sporting a beard! My gynecologist named my problem PCOD. I felt confused and defeated. Was this all in my head? Maybe al this is normal and I'm making a big deal out of nothing. So I accepted her diagnosis - she is the doctor.

My psychiatrist (who was treating me for depression) wouldn't let it go. He believed there were physical reasons for the depression. He listened to my stories of who I used to be; how I loved to hike and camp, how I worked to maintain a 130 pound body, how my energy never ceased. He said I (my story) reminded him of another patient he once had. And soon he became involved with my physical care. He challenged the endocrinologist about test not run. He advocated for me when paperwork was lost and progress was slow.

In March I stared a marathon of tests, everything from 24 hour urine to petrosal sinus sampling. According to my reading, I had every test. FINALLY the endo said "Cushing's" and referred me on to the Cleveland Clinic.

I had a transphenoidal adenomectomy June 16, 2003. The surgery was a success. The gland remained untouched and the entire tumor was removed. I came home to recover the day after surgery. I slept the entire first week - no pain or problems. By the end of the week I was ready to dance and sing...I had not paid attention to Recovery Phase 1 and 2. I thought I'd be different and skate through. Not so. It's been a painful 3 weeks. I've been to the emergency room and the doctor's office because of the pain.

It's a quiet time right now, as I recover. I sleep mostly, and read and journal. Prayer and the love of family and girlfriends is getting me through. When I feel alone in my pain, I imagine I am with Jesus and we talk.

I look forward to updating my story with good news. I wish you peace and renewed energy as you deal with your own Cushing situation. God Bless.

Update: February 4, 2004


Today I am 7 months post transphenoidal adenomectomy and I want everyone to know there is hope and recovery just around the corner.

After surgery in June (2003) I was a lump. I took 8 weeks off work. I couldn't do anything "normal" for the longest time - even grocery shopping was a HUGE ordeal.

The pain and sweating and restless nights were tiring... but I kept praying and resting and accepting the love from everyone around me. Everyone had an opinion during this time... some people thought I should be moving faster some worried that I was doing too much.
I had to listen to my body -really listen and trust in God.

Without realizing it, I started feeling better. I started taking less naps and sleeping through the night. I started cooking dinner again. The medicines -all of them- were stopped and 45 pounds disapeared.

The surgery is a memory now. I still have a ways to go to build up my endurance and loose about 100 pounds. BUT today I am free of all those crazy Cushings symptoms that haunted me for so many years..that made me desperate and crazy!

Today I have a freedom I never imagined and for this I thank my dear Lord!

Update: April 18, 2008

This summer will be 5 years since surgery and I FEEL GREAT. Walking and moving and just loving life. However, oddly our little pug Charlie was just diagnosed with a pituitary tumor and Cushings. it is heart breaking to see all the Cushings symptoms in a helpless animal.

Very weird to share this journey with my little buddy.

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