I hate alligators. Alligators are terrifying and rather vicious animals. These large and menacing reptiles are fairly easy to spot in my native Louisiana. They are glorified in every way, on every restaurant menu and tourist attraction from Bourbon Street to Jefferson Square. If you go to the Audubon Aquarium, you can even see the extremely rare albino alligator. The description at the aquarium says the albino alligator is one of the rarest animals in the world, extremely dangerous, but unable to survive in the wild. I can empathize with the albino alligator. My journey with Cushing’s Disease has left me feeling like a rare being. The beauty in my journey comes from finding a community of these rare beings and seeing what they have been through and knowing there is comfort in suffering. There is comfort in knowing that, while rare, you are not alone.
Upon reflection, my life has been filled with a myriad of symptoms that sent me to several doctors and a confusing chain of “wrong answers”. My Cushing’s journey began in earnest over 10 years ago. I was living in San Francisco, with a great deal of responsibility in my young life. I was in my early 20s, managing a large global account for my company, and feeling hopelessly unprepared and overwhelmed. To the outside eye, even at that time, I looked out of place, like an albino alligator. I was successful but also cracking under the pressure. I suffered my first major manic phase followed by a major depressive episode. This episode was near deadly for me. This low point directed me to a psychiatrist, who diagnosed me with a mental illness. Ten years ago, no one talked about mental illness. It was yet another thing that made me feel rare. Dramatic mood changes are a symptom of Cushing’s. Unbeknownst to me, I had other Cushing’s symptoms at the time that I did not recognize. I had a fully rounded face (moon face), irritability, easy bruising, migraines, etc. Because the prevailing symptoms were mood changes, explained by mental illness, I never gave merit to the others. Eventually, I realized that fighting this on my own was tearing me apart and I needed the loving support of my family. I called my brother, bought him a plane ticket to the West Coast and we packed up my car and drove cross-country to Atlanta.
Fast forward from 2009 to 2015. I had close to eight years of successfully managing my mental illness and feeling like a healthy, upstanding professional again. Being near my family gave me the comfort and watchful eyes to help me navigate through the ups and downs. Little did I know, in my comfort, a perfect storm was brewing that would strip away any protection I had from the unforgiving wilderness of life. I was still the albino alligator; I just found a great disguise and support system.
In 2015 I experienced a major manic episode, a mixed mood episode, and a major depressive episode all in the course of a couple of weeks. This again proved almost fatal. Something had to give. Was I destined to experience this for the rest of my life, or was this something out of the ordinary? I was still unaware of Cushing’s. On top of the mood swings were weight gain and elevated blood pressure. Frustrated and confused, I went to the Mayo Clinic in Minnesota. Perhaps seeing a battery of doctors could make sense of all these disparate symptoms I was experiencing. I could no longer chalk it all up to a mood disorder.
Feeling exposed and desperate for some sense of cover, I sincerely thought going to the Mayo Clinic would make sense of all the horrible health effects I was experiencing. I saw many great doctors but unfortunately, these seemingly random symptoms I was experiencing just didn’t fit the coordinated puzzle they were used to seeing. I was rare and I didn’t fit into what was easily classifiable. “No one understands yourself more than you” my mother would say, and while true, I started to wonder if this was all in my head. Was I a hypochondriac?
I became desperate to change my lifestyle in hopes of seeing a positive effect. I exercised more and ate better because I can control those things. After returning from the diagnostic center, I became hyper focused on being an athlete. My family was a great support. My big brother, Warren, would go running with me regularly and my sister, Emily, did a triathlon with me in Chicago. All the intense exercise and sport amounted to no difference in my body. No matter what I did, I just could not lose weight. Not only could I not lose weight, but also I was gaining it at a rapid pace. I tried vegetarian and vegan diets, but the only way I could lose weight was just stop eating. I tried to blame the weight gain on all the traveling I was doing for work and that I was eating out a lot. These were all perfectly normal rationalizations IF I was perfectly normal.
After a year of trying, I gave up. The diet and exercise felt like me trying to be something I wasn’t. I am not a gazelle. I am an albino alligator and a rather large one at that! In desperation, I started eating whatever I wanted. I gained more than 100lbs in 18 months. Little did I know then, my weight gain was a classic sign of Cushing’s disease. Rather than hide my problems or change my physical makeup, I embraced them in hopes that mentally I could accept what I was and at least find happiness in the symptoms.
Pride and ego are strong parts of every person’s personality, but the human body does not care if you feel empowered about your condition or adamant about who you are as a person. You can embrace weight gain in your mind, but your heart and brain could care less. I was not only gaining weight but my mental armor was doing nothing to protect against the rising blood pressure, bloat, bouts of sleeplessness, acid reflux and decreasing energy. I was tired all the time. Again, I blamed that on travelling. The different time zones, the long hours, the red eye flights.
I knew for my health I had to do something. I researched gastric bypass. If my body would not bend to lifestyle changes, then it was time to change my body physically in order to have a chance at survival. Unfortunately, my insurance would not pay for the surgery, but I thought it was my only option. I spent a small fortune in hopes that I could become a different person. I would have a Roll Royce of stomachs and in turn, the prestige would benefit the rest of my body.
Like buying a Porsche or a Rolex watch, I certainly looked different but it could not hide who I really was. After the surgery, I lost over 90 pounds, but my abdomen remained large. Conversely, my arms and legs became very thin. I had three people within three days ask me if I was pregnant. It was so humiliating. Even though it felt tragic, it was a key factor leading to my Cushing’s diagnosis. The round abdomen, but thin arms and legs are classic Cushing’s. Even the cosmetic change in my body would not make me a powerful lioness. I was just a distorted albino alligator and it seemed the world could tell.
The after effects of surgery put me through a physical hell. My body instinctively knew a new stomach was not the answer. Weeks later, I developed an ulcer in my duodenum that we thought was from the gastric bypass, but we now know was also because of Cushing’s. This ulcer caused me to vomit constantly. For months, I could not keep food down. The lack of nutrition resulted in critically low potassium levels, hospitalizing me for a week. It is an interesting thing to learn in life the people who care about you when you are at your lowest. Through all the earlier trials, I had supportive bosses who allowed me the flexibility to take care of my health. This was the first time I did not. It was devastating.
My blood pressure was sky high, sending me to the ER three times; once on our beach vacation, a response to the previous hell my body went through. On one of those visits, I showed up to the ER with high blood pressure, low potassium, blurred vision and a rash on my neck. I remember one of the doctors leaning up against the wall, perplexed. I could see in his eyes, this is unusual, this is….rare. What seemed obvious and routine, was too much to ignore. I wish I could find that ER doctor and tell him. I want to go back to all the doctors and tell them. Not because I wish they would have figured it out, but I know that if they knew, they would be looking for it in others. I have a current doctor who told me he always says, “I have never met a rare disease, but I am sure it has met me.” I hope as doctors learn more about rare diseases, they are on the lookout for them.
My symptoms seemed to multiply overnight. When I was hospitalized for malnutrition I had extremely swollen feet. The doctors didn’t pursue this further as they were focused on my malnutrition. My mother, a lifelong ER and cardiac nurse, was worried about renal artery stenosis and took me to a cardiologist. When he ruled it out, he sent me to an endocrinologist.
In addition to physical symptoms, I was having cognition problems too. I would walk into a room and not know which room I was in. I would start a sentence and not be able to finish it because I had already forgotten what I was going to say. This was very frightening. It’s hard to explain, but you know you are supposed to know something, but you just don’t. Like you are outside of your body screaming at yourself to just “spit it out,” but your mind will not form the words. This was possibly the scariest side effect. It got so bad I had to rely on my mother to make decisions for me. She would put my pills into packs for the day/time because I would get confused even on what to take and when. When we went out to do errands, the tremor in my hands was so prominent that I could not get a credit card out to pay for things. If I tried, I would invariably end up dropping it. I dropped and broke so many things during that time. There really are no words to accurately explain how hard this was for me. I was physically and mentally finished.
My mother, a nurse with more than 30 years of experience, was determined to get to the bottom of this. There had to be an answer. Without her persistence and pushiness, I might still be sitting here today without a diagnosis. It is probably a common story for those with rare diseases; you need an advocate, you need someone who relentlessly pushes until there is an answer. With Cushing’s, there are so many seemingly random symptoms that you need someone who sees them holistically to advocate. Had any one of those doctors been with me in my daily life, I know they would have figured it out.
I remember exactly where I was when I found out I had Cushing’s. I was on my way to Florida with my family when Dr. Reyes, an Emory (Atlanta, GA) endocrinologist, called me after receiving test results. He is such a kind man, working on a Saturday, he said, “I am so sorry, but this is Cushing’s.” He said it as if I should be sad, but I was happy! There would be no crocodile tears because now we had something to work with. We had an answer! I was completely oblivious to how much that diagnosis would impact my life. I had no idea how important cortisol was and how complex the endocrine system is. I have learned so much about how our bodies work. I am still amazed at how much the pituitary (the size of a pea) controls in our body.
Cortisol affects everything in our bodies, but because of the complexity of the symptoms many people are not diagnosed for 8 years or more. High levels of cortisol put our bodies into “fight or flight” mode, which destroys our bodies. In fight or flight, your body tries to perform only essential functions. Many of Cushing’s patients have bad side effects like liver damage, diabetes, lung issues, etc. I lucked out and just got osteoporosis and kyphosis (curvature of the spine). I say “just”, but I took a minor fall at Thanksgiving and broke 5 ribs. I also broke 2 vertebrae in my back- without even falling. I have the bones of an 80-year-old. One orthopedist described them as “mush”!
Osteoporosis is the “side effect” that has affected my life the most since recovery. I am in physical therapy three times a week and do suffer from a lot of pain. Aquatic therapy has done wonders, but I still do have many days of significant pain. The medicine my doctors recommended was Forteo, the only one on the market that creates new bone rather than strengthening existing bone. Unfortunately this is a relatively new medicine that may cause deformities in children, and there are not enough studies to know how long it stays in your body. For those reasons, carrying my own child is no longer an option for me. Osteoporosis and my broken back have kept me from doing long trips to Africa. I have been going there at least once a year for the past 8 years. Not being able to see my kids for almost two years is devastating. There are so many new realities to face when you have Cushing’s, now I understand why Dr. Reyes said, “I’m sorry.”
Looking back now, I was so blessed. I was diagnosed in September and had surgery in November. God blessed me even more because the world’s best pituitary surgeon happens to be in Atlanta at Emory Hospital. Dr. Oyesiku was able to successfully remove my tumor and gave me excellent odds of success. While my recovery has been extremely difficult, I no longer feel like my demise is imminent. As Dr. Oyesiku left my hospital room, he said, “Welcome to your new life.” I remember thinking at that time, I didn’t want a new life, I wanted my old one back. I can say with confidence that I am happier now than I have ever been. I was successfully rescued from the wild before I could perish. I was the albino alligator that was finally recognized and was going to survive.
Like most alligators, I am pretty headstrong and driven. I usually power through any problem that presents itself. It is how I have survived and thrived. Unfortunately, Cushing’s disease is like the genetic mutation of the albino alligator; its symptoms are painfully obvious yet so rare that my disease was hiding in plain sight. I am not sure how long I would have survived in this wilderness of life if I did not advocate for myself and more importantly, let those who care be advocates also. Cushing’s Disease erased all my strengths and forced me to rely on the help of others, particularly my family, friends, and others who are still suffering today. I might be an albino alligator, rare and endangered, but at least I am something that will not passively perish. I am far too special to let that happen.
Editor’s Note: To read more about the work Laura does, visit rejoicezimbabwe.com.
Fall, 2018
