Sunday, April 1, 2012

Day One of Cushing's Awareness: Knowledge is power!

Here goes my first real post on my new Cushing's blog. I decided to do the challenge of writing about Cushing's Disease for the 30 days of April. April 8th is Cushing's Awareness day which also happens to be Dr. Harvey Cushing's birthday. He is the Neurosurgeon who first discovered Cushing's.  Enough of that for now, there is plenty to come about Cushing's.

First I'd like to introduce myself.  My name is Dawn, I'm a 36 year old female who was officially diagnosed with having Cyclical Cushing's Disease on October 2nd, 2011.  I was diagnosed by the most amazing Dr. Theodore Friedman who is located in Los Angeles, California.

I had brain surgery to remove three pituitary tumors on January 20th, 2012 at MD Anderson Cancer Center in Houston, Texas by the amazing Dr. Ian McCutcheon.  I am supposedly in remission, but I am not so sure.  I am still experiencing a lot of my symptoms, but I'm still holding out hope that I am indeed in remission.

It was not an easy road.  I have been to well over six different endocrinologists over the span of almost twelve years.  Yes, twelve years.  I have seen numerous specialists, Neurologists, Neurosurgeon's, Medical Internists, you name it.  I've pretty much been there.  My real problems started as a young child, but I wasn't aware they were a problem until more recently.  Looking back I am pretty sure I have had this disease since I was a small child.  My weight would fluctuate from normal then I would gain, lose, gain, lose, gain, rinse and repeat.  I remember my body hurting so badly as a kid.  Everyone told me it was growing pains, but in reality I am pretty sure what I was dealing with was adrenal insufficiency from my cycles.  Even as a child I had issues sleeping at night.  I would be up until 2 A.M. and then up at 6 A.M. to get ready for school.  I remember vividly crashing in the early afternoon.  I would literally lay my head on my desk and fall asleep.  It's so familiar to what I've been experiencing as an adult that I just assumed everyone functioned that way.

At the age of 17 things really started to change for me.  I started getting the worst headaches.  I never had an issue with headaches like this before.  I remember my first "migraine" so vividly.  I thought I had food poisoning from some grilled chicken breasts, but no one else got sick. The lights, the sounds, the smells, everything was just so overpowering.  I ended up getting sick repeatedly and crying myself to sleep on the bathroom floor.  After that day, they just kept coming.  I used to work at a fast food restaurant as a teen.  I was prepping some food when all of a sudden I completely lost my vision.  Everything went white.  I was petrified.  I called my dad to come get me and take me home.  Once again, the headache came and then the sensitivity to my own shampoo made me wretch repeatedly.  Thankfully my vision came back, but the headaches never really have gone away.  Also around that same time I started putting on weight.  There was nothing significant happening in my life to warrant this kind of weight gain.  I had recently moved out of my parents home, was working roughly 60-80 hours a week between two jobs.  I was constantly on the go.  There was no time for me to be gaining weight, yet I was. The migraines continued to get worse and I just continued to pack on the weight.  I looked in the mirror and didn't even recognize myself anymore.

Once again, I really didn't understand what was happening but somehow figured I was to blame for what was happening to me.  This was before the internet was in every house.  None of my doctor's suspected anything at the time.  I guess they just figured all eighteen year old kids pack on 100lbs in roughly six months.    Even with the weight gain I was still able to pretty much function like a normal person, but I still couldn't sleep at night.

My weight gain continued and the most alarming part was my face.  Why was my face so round?  Everyone else I saw that was overweight may have had a large body, but they always had a normal looking face.  Mine was like a ball.  My cheeks were always red and I was always so darn hot when everyone else was complaining of being cold.  The years went by and then around 1999, which was roughly five years after I started gaining weight I saw a picture of myself from the side.  What the heck was that thing on the back of my neck?  It was what they term a "Buffalo hump."  It's a deposit of fat that is seen on the back on someone who usually has Cushing's Disease.  Here is my not so lovely hump.

This hump is one of the things that started me on a quest to find out what was going wrong with me.  It was also around that time that I got my first computer and had access to the internet.  That in and of itself was a Godsend for me.  More to come tomorrow!


  1. This is so good, Dawn!!!! You really have some great information here!

  2. Thanks so much! I'm comparing your symptoms to mine. everything is common except being hot. I'm the opposite, always cold when others are hot.