From Size 8 to 18: The Disease That Stole My Body
P.S. I'm overweight because I have Cushing's Disease, not because I ate doughnuts for eight years
I went to my Peace Corps doctor, who chalked it up to situational depression (somewhat common for a volunteer in that stage of service) and Polycystic Ovarian Syndrome -- all without any actual testing. By April, I had completely withdrawn from my life. I stopped going to work and corresponding with my friends and family, including the host family I was living with. I was flown to Addis Ababa, Ethiopia's capital city, where doctors diagnosed me as severely depressed and shipped me to Sibley Memorial Hospital in Washington, D.C., for treatment.
I was in a haze -- totally shell-shocked. I had been immersed in a totally different culture for a year and a half, I hadn't slept in a week and the doctors had given me Valium. When I was told to sign my name on the dotted line for self-admittal, I did as I was told. And I was locked in a psychiatric ward for 28 days.
Over the course of my stay, I was treated like a lab rat. I had blood work done everyday, a spinal tap, five MRIs, an EKG -- if it's done in a hospital, it was done to me. I was also put on four potent psychotropic drugs -- none of which I responded to. At one point, my psychiatrist suggested I undergo electroconvulsive therapy (ECT). I saw people on my floor after an ECT session and they were zombies for 24 hours. Even though I was in a fog of drugs, I had the wherewithal to say no.
Because I wasn't talking to anyone and had shut down emotionally, my psychologist and psychiatrist assumed I had been raped in Ethiopia. They kept saying to me, "When you're ready to talk about it, we're ready to listen." But I wasn't raped, and I felt like they resented me for not being an interactive patient.
Meanwhile, I was packing on weight. In three months, I put on about 30 pounds and my face was completely blown up. A Peace Corps nurse saw my passport picture, noticed the difference in my face size, and said I should be checked for Cushing's Disease, a rare endocrine disorder that makes your body produce crazy amounts of the stress hormone cortisol.
Finally, a Diagnosis
I kept telling my doctors I wasn't crazy. Severely depressed? Yes. Did I need help? Yes. But not the kind I was getting. Finally, they told me (at 1 a.m., by shining a flashlight in my face) that I had Cushing's Disease -- my cortisol levels were off the charts -- and needed brain surgery. A nurse printed off some information from Wikipedia and said, "Here's a survivor story about someone who had this brain surgery and lived to tell about it." I was thinking, 'Is this really what my life is going to be like?'
The Source of My Sorrow: A Tumor
So that was my re-entry into America -- welcome home, right? My parents took me home, and I checked into Shands at the University of Florida. It took them one MRI (I had three at Sibley) to find a big ol' tumor on my pituitary gland. I had my first brain surgery in August 2011. By then, I had gained 50 pounds, I was covered in heinous purple and pink stretch marks and I had half a head of hair. Uneven weight distribution (skinny appendages with central obesity) is a symptom. My first endocrinologist gleefully remarked that it made me look like a giant lemon with toothpicks stuck in it. (Thanks, Dr. Asshole.) My new physical features didn't exactly help my depression (another side effect of Cushing's).
The surgery was unsuccessful, but I survived. The way my neurosurgeon described it to me, my tumor isn't like a raisin that you can just pluck out. It's a gooey blob stuck in and around my pituitary, which is at the base of the brain behind the eyes.
What Does It Mean When Brain Surgery is Unsuccessful?
It means that my body kept producing massive amounts of cortisol (it controls stress, metabolism and blood pressure, and for now, my life), which means I gained even more weight. My body retained fluid, and my legs got so swollen that the only shoe I could wear besides flip-flops were Uggs. In Florida. So that was ... sweaty. I also got acne, really red skin, and a hairy face -- I'm talking side burns that you could literally braid. I was 25 years old, obese, hairy and zitty. Not the image I had in mind of my mid-20s.
I've had more brain surgeries than menstrual cycles in the last three years. Each time, there has been initial hope that the surgery was successful. Going into my second surgery, I was thinking about all of the things I still want to do with my life. The first read of my scan checked out. I was celebrating the news at Harry Potter Land when my doctor called again ... with bad news. They found residual tumor. I told him, "I have to finish my butterbeer. It's melting." I might have a brain tumor, but that doesn't mean I'll let a butterbeer go to waste.
My fourth brain surgery was an intense dose of radiation that zaps the pituitary in the hopes that the tumor will die in a laser battle between good and evil. The surgery was performed by an amazing neurosurgeon (my very own Dr. McDreamy -- no joke), but the procedure did nothing.
I've re-gained 30 pounds since my fourth surgery, even while seeing a nutritionist and trainer and eating rabbit food. When I first started gaining weight, before my first surgery, I hid. I was living in my hometown and put on 50 pounds in three months -- it was incredibly embarrassing. I would run into people I hadn't seen since high school, and I wouldn't have the energy to explain that I have a brain tumor. I wanted to wear a sign that said, "I'm overweight because I have Cushing's, not because I ate donuts everyday for eight years."
Before Cushing's, I was a size eight with a healthy BMI. Back then, I hated what I saw in the mirror. If I could go back in time, I would slap that girl silly. Now, I look in the mirror and think, 'Who is that monster?' Cushing's takes away your attractiveness and femininity and makes you feel absolutely disgusting about yourself. It makes you feel like you're not the person you used to be. I'm overweight because I have a brain tumor. But, to the outside world, it just looks like I'm a very fat person who doesn't take care of herself.
Is There a Silver Lining?
If there is, I haven't found it yet. But there have been some positives.
Staying in touch with my friends and family and keeping people around who like me for who I am is how I've coped with this disease. A disease like this makes you realize what's important. It's not job security or how you look. It's what makes me happy, which for me is being in touch with friends and family. It's really cliché and silly to say, but it's what's on the inside that matters. I'm living proof of that.
I put more effort into my appearance now. I used to go shopping for clothes when I felt bad, but I avoid that now. Instead, I go to Sephora. Before, I was living in Ethiopia and heating my own water to take a bucket bath -- that's the only effort I put into my looks. It's weird, but I feel like I'm finally becoming a lady in my late 20s -- I do my hair and wear red lipstick and sparkly eye shadow.
I've also come to terms with the fact that this is not my fault. For a long time, I thought this was karma -- punishment for not completing my Peace Corps assignment (which I know is crazy talk, because I got the tumor in Ethiopia. But tumors make you think crazy, people). I did everything I could do to be healthy and I was still gaining weight, so I know it's not something I can control. This disease came out of nowhere, and happened to an intelligent and healthy 24-year-old. It's not genetic or environmental, it just happened. While I spent most of 2011 and 2012 ducking out of photos, I've finally learned not to be ashamed of my body, my disease or my bouts with mental illness, because it's Not. My. Fault.
My humor has been my saving grace. I'd rather laugh than cry about this, so I try to have fun with it. Laughing about things like being able to see my double chin on an MRI or trying to eat with a steel halo screwed into my head helps me to keep from going crazy.
I was referred to an endocrinologist at Emory in Atlanta, who told me my case was too specialized. That was heartbreaking. If this disease isn't treated, it will eventually kill me, so I have some decisions to make. Removal of my adrenal glands is my only option left, but that means I'll stop producing cortisol altogether and I would have to take artificial cortisol to keep me from, uh, dying. Since cortisol keeps your fight-or-flight response intact, I asked my doctor, "If a bear is standing over there, will I have the ability to be like, 'F***! IT'S A BEAR', or will I be like, 'Heyyyyy, it's a bear! Neat!' My sense of humor is definitely getting me through this. The doctor reassured me that I should be able to run in that situation ... after telling me I'm weird and no one had ever asked him that.
To read more about Laura's story, you can visit her blog.
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