I don’t know if you noticed, but I’ve been MIA for about the past year or so. I’ll tell you what happened, as it’s been a whirlwind of a year…or 2 years, really.
After graduating in December 2008 with a degree in Health Education from the University of Florida, I applied to join the US Peace Corps. It took months to get accepted. However, after everything was said and done, I received an invitation to serve in a health program in Ethiopia. I left for Ethiopia in October 2009 as a very young, healthy, and motivated individual, in hopes of changing a few lives.
I loved living in Ethiopia and being in the Peace Corps. However, in February 2011, I started withdrawing from life and things I enjoyed. Eventually, I stopped communicating with my family and friends, and quit going to work at the local health clinic where I was stationed. My parents started to worry; they got in touch with the Peace Corps medical staff in Ethiopia, who in turn flew me down to the capital city so I could be evaluated. This was on Easter Sunday, 2k11 (late April).
At first, the doctors thought I was severely depressed. I was medically evacuated from Ethiopia and sent to Washington DC, where I was evaluated by “mental health professionals”. From this encounter I was admitted to a psychiatric ward of a hospital and within a matter of days put on four pretty potent antidepressants. I kept getting worse. I rapidly gained weight, lost a lot of my hair, my period, and basically, all joy in life. So, being that I was in a hospital setting, the doctors started running all kinds of tests; lab work in the form of blood and urine tests, MRIs, a spinal tap, CT scans, etc…by the third week of my hospital stay it was determined that the cortisol in my body was being produced at a rate of 5x the normal limit. Cortisol is the body’s stress hormone, and it also controls your metabolism and blood pressure.
When the doctors took a collective look at all of my symptoms, I was the poster child for something called Cushing’s Disease. I literally had every single symptom of the disease. Cushing’s, a rare hormonal disorder that affects very few people worldwide was affecting me!. After 28 days of being locked up in the psych ward, Peace Corps signed me over to my parents and drove me back to Florida. Upon my return to Florida, I was seen by a team of specialists at Shands Hospital at the University of Florida. I started seeing an endocrinologist down there, and through more lab work, it was discovered that I had a small tumor on my pituitary gland, which was causing the Cushing’s. I had my first brain surgery on August 24, 2011. I had to take steroid medications after my surgery, so my cortisol levels couldn’t be measured until after being on the meds for 2.5 months.
While waiting to get off the steroids, I kept putting on weight, to the tune of about 2.5 pounds a week, even while participating in Weight Watchers. My blood pressure had gone up 40 points, and my feet were swollen to the point that I could only wear old stretched out flip flops and Ugg boots (in Florida when it’s 85 degrees!). I retained fluid like it was my job!
To make a long story short, I got a call from my endocrinologist a couple days before Thanksgiving, saying that the Cushing’s was still in my body and that the first brain surgery wasn’t 100% successful. My only option at this point was to have another operation, or I will ultimately die from heart failure due to all the secondary complications of Cushing’s. I had a second pituitary tumor removal on Thursday, December 22nd. Fortunately, I was released on Christmas Eve and was able to spend the holidays back in Tallahassee with my family!
All signs point to the second surgery as being a success, but I’ll know for sure when I go back to Shands next Friday, January 13th. Already my cortisol in the blood is down where my doctors want it, my BP is down like 25 points, and I have lost 5 lbs instead of gaining 2.5/week. Also, all of the swelling is out of my feet/legs, so I can FINALLY wear shoes again. Small victories, or baby steps, I call them!
Before I was diagnosed with Cushing’s, I was a size 8 and weighed 165 pounds. The last time I was weighed by my doctors, I weighed 239 pounds. I have gone from a size 8 to a size 18. Additionally, I’ve taken an extreme blow to my sense of self. Cushing’s is not necessarily a physically painful disease, but it’s taken so much of an emotional toll over my entire well being. Plus, there is really not a whole lot out there about Cushing’s Disease. I want to bring awareness to this Cushing’s situation and maybe be a source of inspiration for others out there facing the same problems. From what I’ve found out. I am indeed very fortunate. It only took me a matter of months to get diagnosed and treated. Too many individuals are only evaluated one symptom at a time and suffer needless self degradation for years and years. I’ve had an amazing support system of friends and family behind me the whole time, and everyone is just happy that I am in good hands with world renowned doctors at Shands.
I am trying my best to stay positive throughout this whole ordeal, and I have a feeling that everything will work out in the end. Nonetheless, I want to write a book about my experiences in Ethiopia, the mental ward of a community hospital, and my bout with Cushing’s Disease. How does one go about doing such a thing? I want part of the proceeds to go to my bank account so I can further my world travels, part to Cushing’s research and treatment, and part to a foundation I want to set up in my old village to do health related work in Ethiopia. I would also like to become a spokesperson for Cushing’s, as I am the face of this disease.
If you are interested in talking more or meeting with me to further discuss my crazy situation, please do not hesitate to contact me at 850.544.1614, or you can email me at CopelandLE@gmail.com. If you want to see pictures of my time in Ethiopia, I have a website:
, and I have 2 years worth of mass emails (highly entertaining), that I used to send as updates to my friends and family back home. I was medically separated from Peace Corps on June 29, 2011; I am still technically considered to be a “Returned Peace Corps Volunteer”, even though I was unable to complete my 27 month commitment.
With love and a brain tumor no longer in tow,