Turn up the speakers and enjoy my friend Stephanie tell off Cushing's... in tune!
Forget You!
HEALTH & BEAUTY
Tuesday, February 25, 2014
Sunday, February 23, 2014
What is THE WORST DISEASE YOU CAN HAVE?
My blog got Cushing's listed as the 18th site listed, among this terrible list of ailments. At least it's on the radar :)
http://mrwhatis.net/the-worst-disease-you-can-have.html
http://mrwhatis.net/the-worst-disease-you-can-have.html
Radiation vs BLA
Many questions circle around a Cushie's head before undergoing a bilateral adrenalectomy (BLA). Many doctors convince the patient that BLA will kill them or they will die any second (well, unmanaged Addison's can cause death from adrenal crisis but we Cushies can take good care of us), refuse treatment and instead push the patient into radiation therapy or medication that should work but doesn't really cure a patient without causing so many side effects that they new state of health is just as bad.
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."
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
Fantastic! Adrenal Insufficiency United has its new shop up and running. Get yourself an emergency kit and other goodies.
Guest Blogger Blogger: Laura C.
My new friend Laura shared her battle with Cushing's. We all applaud her bravery and honesty. #lauraisscool
--im having trouble pasting this here. If it messes up, I'll be back when I have more battery. I'm at 4% and no cord in sight. Well, it is 3:10 am!
HEALTH & BEAUTY
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
If you had told me when I joined the Peace Corps that, in 18 months, I'd be medically evacuated out of Ethiopia after falling into a suicidal depression, I wouldn't have believed you. If you had said that I'd spend the next 28 days in a mental ward, trying to convince a team of doctors that I was not, in fact, crazy, I'd have thought thatyou were crazy. If you had told me that, three years later, I'd still be battling the disease that prevented me from completing my service, I would have wondered, 'What disease?' I'm a healthy, happy 23-year-old about to embark on a life-changing adventure.'
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.
Pre-Cushing's
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).
How many people can say their double chin is visible on an MRI? Hilarious.
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.
I don't think this is the 'Halo' Beyonce was referring to
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 mean, this man BELONGS on a medical drama
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.
Pre-Cushing's
At the height of my disease
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.
This is me -- for now
To read more about Laura's story, you can visit her blog.
If you had told me when I joined the Peace Corps that, in 18 months, I'd be medically evacuated out of Ethiopia after falling into a suicidal depression, I wouldn't have believed you. If you had said that I'd spend the next 28 days in a mental ward, trying to convince a team of doctors that I was not, in fact, crazy, I'd have thought thatyou were crazy. If you had told me that, three years later, I'd still be battling the disease that prevented me from completing my service, I would have wondered, 'What disease?' I'm a healthy, happy 23-year-old about to embark on a life-changing adventure.'
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.
Pre-Cushing's
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).
How many people can say their double chin is visible on an MRI? Hilarious.
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.
I don't think this is the 'Halo' Beyonce was referring to
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 mean, this man BELONGS on a medical drama
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.
Pre-Cushing's
At the height of my disease
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.
This is me -- for now
To read more about Laura's story, you can visit her blog.
Friday, February 21, 2014
7 week post op update
A family member, 2nd cousin, asked how I was doing. I decided to share it here for all to see.
"Thank you for asking! I'm seven weeks post op. I'm doing better. The surgical sites on my waistline on my back are finally healed up. The surgeon only made six small incisions to remove the adrenal glands. That part is really great. I'm happy about the surgery.
The challenge comes in finding a balance in all of the hormones produced by the pituitary gland (8 of them directly and 4-6 more indirectly through other organs) plus the 5-6 produced by the adrenal glands (cortisol, aldosterone, renin, Dheas). So I'm experimenting with medicine increases and decreases based on symptoms that prompt me to go get lab results. I'm tired with a headache across my eyebrows. Is that low thyroid? High thyroid? Low growth hormone measured through the liver in IGF-1? Maybe it's the renin. What's renin? I just got it straight last week! It's high so that means add more, not less! I just have to laugh about it. It's a funny little science project game I get to play. I'm scientist, doctor, pharmacist, and patient, all at the same time. It can be a long process -- many months --and overwhelming but I'm managing and hopeful now. Before the adrenals were removed, my body and mind were in constant battle; without it, I finally feel at peace. I can come up for air and return to doing things I really enjoy, like genealogy and learning about our family past and present.
So, to answer your original question, I'm doing quite well."
What Happens after Diagnosis
I wanted to share something I recently wrote to a mom asking questions about her 20-year-old son's future as an undiagnosed
Cushie. She said she has an appt to see the endo, but wanted to ask a group and me what we thought.
"I smiled when you said we know more than the docs. It's true. You'd never get 6 docs to respond in three short hours.
After seven active years of online searching and bonding, I've watched a lot of Cushies' journey. I met many in person, spoken to many on the phone, and corresponded with even more online. There is no board game that some follow here and some do this. Every Cushie has different symptoms, different presentation, different surgeries, reaction to meds, etc. Some are cured with one pit surgery; some five. Some pit tumors are inoperable so people try medication that rarely works. Many end up with a BLA like me and do very well. Sometimes these pesky tumors that have been hiding show up finally to wave hi. You will not know your son's until it happens, just like life :)."
Cushie. She said she has an appt to see the endo, but wanted to ask a group and me what we thought.
"I smiled when you said we know more than the docs. It's true. You'd never get 6 docs to respond in three short hours.
After seven active years of online searching and bonding, I've watched a lot of Cushies' journey. I met many in person, spoken to many on the phone, and corresponded with even more online. There is no board game that some follow here and some do this. Every Cushie has different symptoms, different presentation, different surgeries, reaction to meds, etc. Some are cured with one pit surgery; some five. Some pit tumors are inoperable so people try medication that rarely works. Many end up with a BLA like me and do very well. Sometimes these pesky tumors that have been hiding show up finally to wave hi. You will not know your son's until it happens, just like life :)."
Thursday, February 20, 2014
Tuesday, February 18, 2014
Cushing's Changes You
Monday, February 17, 2014
Happy Presidents Day!
Today, I share a special Presidents Day treat. It brings a smile to my face to know what is possible for me.
BLAers and pre-BLAers.
We can manage our daily stress. If JFK could do it running campaigns and being president, we can manage our family and lives. Kid's science fair project/ birthday party or Bay of Pigs/ Cuban missile crisis? "The only thing to fear itself."
http://www.nytimes.com/2002/11/17/us/in-jfk-file-hidden-illness-pain-and-pills.html
Here is another post I made about JFK's frail health in June 2009:
http://cushingsmoxie.blogspot.com/2009/06/jfk-had-adrenal-trouble-too.html?m=1
and November 2013
http://cushingsmoxie.blogspot.com/2013/11/character-above-all-john-f-kennedy.html?m=1
Friday, February 14, 2014
You are the Medical Expert
I hear this question among Cushies and non Cushies alike:
Should we change our cortisol dose on our own or wait to speak to a doctor first?
This is my very strong and firm opinion, as a Cushie/Addie who had lived with a type 1 diabetic.
Make no mistake.
A doctor would NEVER tell a diabetic to call them in a low or high and NOT adjust his/her insulin dose without talking to the doc or nurse first. A diabetic would die waiting for a doc's reply. A BLAer could, too.
BLAers, you must adjust your dose as needed. We have no cortisol meter like diabetics have glucometers. We must trust ourselves. We must trust our bodies and symptoms that tell a story. We must base every decision regarding cortisol dose on how we feel and compare/contrast that to what other BLAers feel. Then make the decisions for ourselves.
Doctors are there to check in with regularly, to order tests, to give us a big picture perspective. The collective knowledge that this group of 83 Cushies has is greater than 99% of the doctors who give us instructions. They have never done it! They will give us the textbook version that, in reality, has taken years to write, edit and publish. A Cushie's knowledge is current, fresh and open to new ideas. We all want to feel better and we will fight to get better.
Do what you can to be your own medical expert. The truth, you are already.
Thursday, February 13, 2014
National Organization of Rare Diseases Supports Cushies with Grants for Medical Expenses
APPLY NOW:
NORD ANNOUNCES NEW CUSHING'S SYNDROME PATIENT ASSISTANCE PROGRAM
In partnership with Corcept Therapeutics Inc., the National Organization for Rare Disorders (NORD) has established a Cushing's Syndrome Patient Assistance Program for patients with endogenous Cushing's syndrome who need financial assistance with certain costs related to their medical diagnosis and/or care.
Endogenous Cushing's syndrome is a serious and debilitating rare disorder caused by over-production of cortisol, a steroid hormone that increases blood sugar levels, by the adrenal glands. The syndrome most commonly affects adults between the ages of 25 and 40.
"It is especially appropriate that we are making this announcement just before Cushing's Awareness Day, which will be observed on Sunday," noted NORD President and CEO Peter L. Saltonstall. "The Cushing's Support and Research Foundation (CSRF), a non-profit organization for patients and families affected by Cushing's syndrome, is a member of NORD. We are pleasd to join CSRF and the entire Cushing's community in promoting awareness of Cushing's syndrome at this time."
The new program, which launches on April 11, will provide assistance with deductible and/or co-pay expenses to ensure patient access to Korlym, a drug developed by Corcept and approved by the Food and Drug Administration earlier this year.
The program will also provide financial assistance to eligible uninsured and underinsured patients for reasonable expenses required for diagnosis, direct treatment, and care that are not covered by insurance. These would include incidental medical expenses such as lab and diagnostic tests, as well as related expenses such as travel for a medical consultation.
Patients seeking information about the program, or to apply, may contact NORD through a toll free phone number (800 999-6673 Ext. 326) or by email (cushings@rarediseases.org).
Prior to FDA's approval of Korlym on Feb. 17, 2012, there were no approved medical therapies for the treatment of endogenous Cushing's syndrome. Korlym is approved for use in patients with endogenous Cushing's syndrome who have type 2 diabetes or glucose intolerance and are not candidates for surgery or have not responded to prior surgery.
NORD is a nonprofit organization, established in 1983, that represents the 30 million Americans with rare diseases. In addition to patient assistance programs, NORD provides programs of advocacy, education, awareness, and research.
There are other programs that NORD lists on its webpage here:
http://www.rarediseases.org/patients-and-families/patient-assistance
http://www.rarediseases.org/patients-and-families/patient-assistance
Saturday, February 8, 2014
Laparoscopic Right Adrenalectomy
http://emedicine.medscape.com/article/1894961-overview
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