Hi my name is Stacy. If I could sum up my journey in two words I would say it was the PERFECT STORM… yes; it wreaked havoc on my body and was debilitating at times but it taught me patience, the benefits of persistence, the power of knowledge and the power of God.
Before Cushing’s disease I was a healthy, vivacious young adult with aspirations to travel the world and open a Victorian tea room. Before being laid-off, I regularly worked 80-90 hour weeks.
My journey with Cushing’s disease began in 1996 when I was a stay at home mom and a student. While my daughter was in school I worked out regularly usually running, weight lifting or swimming. While running, I noticed that my calves burned with exhaustion after just a minute; I felt like I had run a marathon. I thought maybe I’d take it easy for a couple of days, but days turned into weeks and weeks into months. Finally, with much resistance on my part, I scheduled a doctor’s appointment and explained the general feeling of fatigue, unusual exhaustion (while running) and minimal weight gain. My doctor ran some blood tests and told me to, “…come back when I was sick!”
A couple of years passed and I was steadily gaining weight. By this time I was working again, continued to exercise and tried every diet regimen possible to lose those unwanted pounds, all to no avail. Imagine at this point, I had gained so much weight that I didn’t recognize myself in the mirror. Imagine the stares of those who knew me before, the degrading remarks, and my silent frustration of not being able to do what I used to. I continued running but now, not only are my calves burning, but I’m totally out of breath. I’ve been running since I was 14; I’m now 30. What is happening?
I turned to an herbalist who suggested a raw food diet for 3 months. I tried it and gained more weight than I did in the years prior! Totally frustrated, but not willing to give up, I adopted the eating habits recommended in Traditional Chinese medicine and practiced Qi gong. These were helpful, but I was getting weaker and weaker; daily tasks were harder and harder. Several months went by as I contemplated what to do.
In 2005, in further decline, I worked with an attorney whose office was located directly across from a Primary Care physician, Dr. Norman McKoy. Every morning and every evening for one year, I waved and smiled at Dr. McKoy, wondering if I should speak with him. I had heard wonderful things about him, but I was hesitant because of previous experience. Finally, I make the appointment. I explained my symptoms, did more blood work, came back for the results and he said, “You may have Cushing’s disease.” It was music to my ears. I had never heard of Cushing’s disease, but finally I knew what was wrong and I could be cured. Dr. McKoy was wonderful and connected me to an endocrinologist, a cardiologist and a neurologist to confirm his results. Contrary to his prognosis, the diagnosis: Insulin Resistance!
Frustrated and not yet understanding that Cushing’s disease is a progressive disease, I waited several months to see yet another physician only to be told “my triglycerides were high,” and perhaps I should consider gastric by-pass surgery. Heartbroken; but, determined not to give up, in 2008 I sought out a gastroenterologist because of stomach issues who, after an in-depth evaluation, referred me to a Weight Management Specialist, who then referred me to Johns Hopkins for a Sleep study. The results were that I had Sleep Apnea. So now, not only am I a hot air balloon, but; I have to wear this pretty little mask to help me sleep.
At a progressing 316 lbs., I headed off to yet another Primary Care Physician, Dr. Teri Richardson with my medical history, my story and my food journal. After careful review of my history and recent blood work, my doctor assured me that I’d be fine, but she wanted to do additional tests. At this point, not only was my blood pressure out of control but I was referred to an Oncologist. The Oncologist suggested that I might have leukemia and ordered a bone marrow aspiration and biopsy. Thankfully, I was not positive for Leukemia; but, I still felt something was wrong. I was totally exhausted! A typical day for me (like many others) was filled with doctor’s appointments and a myriad of mixed emotions: I was alternately happy, sad, frustrated, overwhelmed, and tired.
I just want to add, it is lovely, so lovely, to have someone who listens to you and is working on your behalf to make you feel better. Dr. Richardson was PARAMOUNT in my healing and shortly thereafter referred me to yet another endocrinologist! Drum Roll please: and the winner is: Yes! This was it! After many tests, too many MRIs of my brain to count, much prayer, 14 years, five doctors and weighing a whopping 365 pounds, my endocrinologist, Dr. Asha Thomas, finally diagnosed me with Cushing’s disease in September, 2010. Like most Cushies, I was ecstatic with a diagnosis!
Unfortunately, treatment was delayed. I tumbled down a few steps breaking my tibia and fibula which required emergency surgery that included a plate and several screws to repair. While recovering, I received an urgent call from my endocrinologist, requesting yet another MRI as perhaps my fall could be attributed to Cushing’s disease.
After 4 months on non-weight bearing status and 3 months of physical therapy, I was released and referred to Johns Hopkins Hospital for another MRI and many other tests. This is where I met the DREAM team: neuro-endocrinologist, Dr. Roberto Salvatori, my soon-to-be Neurosurgeon, Dr. Gary Gallia as well as my ENT Surgeon, Dr. Masaru Ishii who identified that I had a tumor on my pituitary gland and determined that I needed surgery.
I was scared, but ready to be cured! On Nov 18th, 2011 during an 8-hour surgery, Dr. Gallia and Dr. Ishii, operated on me through my nose, an endoscopic approach, to remove the tumor from my pituitary gland. After a day in the Neuroscience Critical Care Unit, my cortisol levels didn’t drop, causing the team to suspect that not all of the tumor had been removed. They asked if they could do another surgery to try and remove it. Once again, trusting their expertise, 4 days later I rolled into surgery for another 8 hours, during which three additional tumors were removed.
Recovery was very challenging, necessitating several trips to the emergency room, but there is light at the end of the tunnel. Aside from some memory challenges and loss of the majority of my peripheral vision, 3 years post-op, I feel absolutely wonderful! I am steroid and medication free, my blood pressure is normal, I’m stronger and I’m continuing to lose weight, almost 100 pounds so far!
There are 3 things I’d like to share with anyone suffering from Cushing’s disease:
- See the end at the beginning and don’t get discouraged: know there is a light at the end of the tunnel.
- Educate yourself so you can be a self-advocate. Make sure the information you find on the internet is reliable and always discuss any information you find with your doctor
- Please be kind and gentle to yourself. Also, be extremely patient with yourself and persistent with what ails you! This will definitely move you forward.
What I found helpful was to pray, meditate, sing and laugh often! God bless you. Please contact me if I can be of help to you.
Newsletter: Winter, 2014