HEALTH & BEAUTY
“Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity
Monday, April 21, 2014
Cushing's Awareness Month: It's Not our Fault
Cushing's Awareness Month: Why Doctors Don't Know
Why Doesn't My Endocrinologist
Know All of This?
Sunday, April 20, 2014
Cushing's Awareness Month: How do I partner with my doctor
5 Things to Do When Symptoms Are Not 'All in Your Head'
Saturday, April 19, 2014
Cushing's Awareness Month: Notes from a Neurosurgeon
Dr. McCutcheon is a wonderful neurosurgeon. He performed my second pituitary surgery.
Dr. McCutcheon has helped many Cushing's patients by understanding the disease and listening to his patients.
Dr. McCutcheon is a professor at world-renowned MD Anderson Cancer Center located in Houston, TX.
Friday, April 18, 2014
Cushing's Awareness Month: When the "gold standard" becomes tarnished
Robin, blogger at http://survivethejourney.blogspot.com, wrote the post that is true today as it was all those years ago (sadly.)
http://survivethejourney.blogspot.com/2012/04/day-24-of-cushings-challenge-when-gold.html?m=1
Cushing's Awareness Month: Diagnosis is not as easy as it seems
Cushing's Awareness Month: Pituitary & Adrenal Glands
The world's largest online library of high-resolution 3D scans using real human data—at your fingertips! TheVisualMD uses the most advanced 3D medical technologies to create its one-of-a-kind visualizations. You'll find accurate, detailed images of subjects ranging from angioplasty procedures to brain synapses to yoga positions.
Thursday, April 17, 2014
Wednesday, April 16, 2014
Cushing's Awareness Month: My Life is a Delicate Balance
"A call comes in to 9-1-1 dispatch. “Help” is all that’s spoken before the operator hears the phone hit the floor. The 9-1-1 dispatcher calls back only to get a busy signal. Police and EMS are dispatched for a well-being call. On arrival, the front door is found to be slightly ajar. The crew knocks, but there’s no reply. They find a young woman lying on the floor... in a pool of vomit."Before we get the article, let's be clear. This article is just another example of what we Cushies already know. Medical expertise about our conditions, Cushing's and adrenal insufficiency, is limited, even in the emergency rooms meant to save everyone. We know that doesn't apply to us. We are bombarded with weekly stories detailing horrible treatment at the hands of ER doctors and nurses. Even with an unhelpful doctor, a family member or friend can be the difference, the force that demands attention to our plight.
This is why I am so passionate about advocating for Cushing's Awareness and educating Cushies and their families about the dangers of adrenal crises. I do this as I struggle and because I struggle to deal with the complacency of my own.
I'm confounded as to why family and friends around me aren't too startled or concerned when I say I could die if I forget a dose of medication or if a physical or emotional stressor is more than the medication I consumed for the day.
Can we count on you to do that?
The patient shows no signs of waking. The crew clears the airway and administers oxygen. An IV is established, and the patient is readied for transport. As the crew leaves the scene, one of the medics turns to shut the door and sees a vial under a chair. He retrieves it and notes that the label says Solu-Cortef (a glucocorticoid). He bags it for the emergency department (ED). Following his instinct, he looks around the area for medications and finds two bottles. One is labeled dexamethosone and the other is labeled fludrocortisone. He takes his findings and rushes out the door into the awaiting ambulance. During transport, the patient continues to deteriorate.
On arrival to the ED, the medic hands over the loaded syringe containing 2mL of unidentified solution, as well as the empty vial of Solu-Cortef and the bottles of dexamethosone and fludrocortisone.
Cushing's Awareness Month: Thanks but No Thanks
Robin, the Cushie survivor who blogs at http://survivethejourney.blogspot.com, created all the graphics for us to share during Cushing's Awareness Month. Thanks Robin!
Friday, April 11, 2014
Cushing's Awareness Month: Degree of Difficulty
Wednesday, April 2, 2014
Cushing's Awareness Day 2: Depression Cloud Follows Cushies
I logged onto my online Cushing's group tonight.
to another day of sickening thoughts and silent criesMy mind awakes once more to realizeI must face yet another day of struggling to surviveThe pain sets in and the unrealistic, realistic thoughts pour inI cannot concentrate, focus, just sit and wonder how to beginTo get back the life I once had, so normal and trueLoving family surrounding, yet none with a clueFilled with disease my body began to failTo disintegrate, fall apart and become frailAway from reality, family and friendsIts taken me to hell without any endI've lost my life, my friends are fewFamily doesn't understand, as white trash I am viewedI don't want to go on, each night I lay my headI pray I'll just sink into the ground because I feel I am already dead.
Tuesday, April 1, 2014
Post #1: Chronic Pain and Incertainty
Cushies are tormented as we struggle with the medical community and face our own bodies and changing identities every day. It just shouldn't be this way. Cushing's Awareness Month
One of my favorite times of the year.
Although many celebrate one day of Cushing's awareness centered upon Harvey Cushing's birthday on April 8th, it is my goal to see April celebrated as Cushing's Awareness Month.
We need the chance to educate and advocate.
We need the support of those who surround us every day.
We need to reach all of the undiagnosed souls seeking answers in uncertain times.
We need the chance to stand up as survivors, hold hands, and say, Yes! We made it through another year.
April has become a very important time of the year for me, as a Cushing's survivor, and I hope you enjoy what's pops up this month. It will be a surprise to all of us, since even I don't know what I will say in 30 posts in April. ;)
Stick around. It will be fun for all of us.
- Melissa
PS Special thanks to Robin for designing the Cushing's Awareness logo. She blogs at http://survivethejourney.blogspot.com/
PS2 Look how honest I am. I'm
Not even gonna count this as my first real post. I'll do 31 posts in April, and I will like it! So will you. :)
Monday, March 31, 2014
Actors faking ailments to help doctors improve
How ca I get a job doing this full time? No need to write up a script. I'll just use my real-life experiences. Easy peasy.
http://m.bbc.com/news/magazine-26723617
Thursday, March 27, 2014
Cortisol Clock?
http://www.thevisualmd.com/panel/?c=07.3
Monday, March 24, 2014
Patience
People have no patients. We must find it. It's essential to reducing stress.
Not a Weight Loss Story
After a wonderful massage, my chiropractor told me that she didn't even recognize me sitting in the waiting room. I was truly surprised. I told her that I don't see much of a physical difference. She said it was there, and we often don't see it in ourselves because we see it every day. She said I look totally different. She could see it in my face and body shape.
I haven't seen her since my BLA surgery on 12/31/13 and showed her my six little scars on my back. I will continue with massage therapy once a month and restart acupuncture therapy every other week to help balance hormones and for overall well-being.
This isn't just a weight loss story, because I haven't lost any weight since BLA. My body shape has changed and my face is much slimmer. I still don't understand where everything has moved or shifted since my weight is the same. My stomach isn't distended anymore. Was that just filled with air? Really. Where did it go? Should I even bother to figure it out? Naaaaah.
For me, this story means cortisol no longer has me in a vice grip. That means I am getting better. That means I feel like this:
Wednesday, March 19, 2014
Adrenal Crisis Pathway
http://www.cahisus.co.uk/pdf/Adrenal%20Crisis%20Pathway%20Professor%20Peter%20Hindmarsh.pdf
Friday, March 14, 2014
Thursday, March 13, 2014
Cushing's overview
http://www.pituitarysociety.org/public/specific/cushing/cushings.pdf
Tuesday, March 11, 2014
Cushing Syndrome: Maybe Not So Uncommon of an Endocrine Disease
I heard Dr Salvatori at the Johns Hopkins School of Medicine at the Magic conference in July 2012.
Saturday, March 8, 2014
Tuesday, February 25, 2014
Must Watch Song!
Sunday, February 23, 2014
What is THE WORST DISEASE YOU CAN HAVE?
http://mrwhatis.net/the-worst-disease-you-can-have.html
Radiation vs BLA
This is what I have to say about that:
"From what I have seen in others, just limited to those I see online who may still be sick and hunting for answers, there sure are quite a few folks who are never the same after radiation. Five years to wait for a cure is a long time to be sick especially after the many years Cushies wait for diagnosis and between treatments and surgery. For me, I'd rather live for 4.5 years with a BLA-- really LiVe with hope and joy again-- and take my chances on what I will face in five years. I want to live for the now, and with my BLA, I have that chance."
Saturday, February 22, 2014
Shop.AIunited.org
Guest Blogger Blogger: Laura C.
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
Ironically, the biggest "adventure" in my life wasn't joining the Peace Corps and working in Ethiopia, but it did start there. In January 2011, I stopped getting my period, my hair started falling out, I was gaining weight and I was feeling depressed -- out of character for me, since I usually laugh as much as I breathe.
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).
When I went into surgery to remove the tumor, I secretly hoped I wouldn't make it out. I didn't tell anyone this, because when you actually want to die, you don't want to make other people sad about it or have them try to save you.
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.
Third time's the charm, right? Nope. After my third brain surgery, I got depressed again. After going to the doctor, they confirmed that my levels were insane, and gave me one other option to try before removing my adrenal glands (which would "cure" Cushing's, but give me another life-long disease).
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.
Four Unsuccessful Brain Surgeries Later ...
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.
Do I want people to know I have a brain tumor? Yeah, because, let's face it, overweight people get a bad rap. But if I tell people, the pity party starts. It's kind of hilarious, but when I tell someone I have a rare endocrine disorder, they say, "Oh, I never would have known!" It leaves me wondering, so ... are you going to treat me differently now? People are overweight because of things they can't control, and I'm one of those people. Trust me, 85 extra pounds is no joke. Essentially, I have a fifth grader strapped to my stomach. It keeps me from doing a lot of things I used to do.
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.
What's Next?
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.
I'm not there yet, but the end is in sight. It's been three years since I started having symptoms. Three years, four brain surgeries, a lot of medication later, and I still have the biggest journey ahead of me. I never planned for this to happen, but it did, and there's nothing I can do about it. I just have to roll with the punches. In the meantime, I've learned to be comfortable in the skin I'm in.
To read more about Laura's story, you can visit her blog.
JANUARY 30, 2014 | by LAURA COPELAND,AS TOLD TO EMILY WOODRUFF
Ironically, the biggest "adventure" in my life wasn't joining the Peace Corps and working in Ethiopia, but it did start there. In January 2011, I stopped getting my period, my hair started falling out, I was gaining weight and I was feeling depressed -- out of character for me, since I usually laugh as much as I breathe.
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).
When I went into surgery to remove the tumor, I secretly hoped I wouldn't make it out. I didn't tell anyone this, because when you actually want to die, you don't want to make other people sad about it or have them try to save you.
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.
Third time's the charm, right? Nope. After my third brain surgery, I got depressed again. After going to the doctor, they confirmed that my levels were insane, and gave me one other option to try before removing my adrenal glands (which would "cure" Cushing's, but give me another life-long disease).
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.
Four Unsuccessful Brain Surgeries Later ...
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.
Do I want people to know I have a brain tumor? Yeah, because, let's face it, overweight people get a bad rap. But if I tell people, the pity party starts. It's kind of hilarious, but when I tell someone I have a rare endocrine disorder, they say, "Oh, I never would have known!" It leaves me wondering, so ... are you going to treat me differently now? People are overweight because of things they can't control, and I'm one of those people. Trust me, 85 extra pounds is no joke. Essentially, I have a fifth grader strapped to my stomach. It keeps me from doing a lot of things I used to do.
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.
What's Next?
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.
I'm not there yet, but the end is in sight. It's been three years since I started having symptoms. Three years, four brain surgeries, a lot of medication later, and I still have the biggest journey ahead of me. I never planned for this to happen, but it did, and there's nothing I can do about it. I just have to roll with the punches. In the meantime, I've learned to be comfortable in the skin I'm in.
To read more about Laura's story, you can visit her blog.





















