The Conley Cushing's Disease Fund

While I don’t know exactly when my Cushing’s journey started, I can honestly say that I have mismanaged stress and trauma in my life going back to my childhood and I believe my body paid the price for that mismanagement. By the time I was 35, a single mother and working in middle corporate management, the effects of the stress were starting to be more apparent. I knew there was something wrong going on inside my body long before it showed physically.

Day in and day out, I felt things changing. But because I could not explain it, nor did I understand the changes, I hid them from others.

Shortly after the loss of my childhood best friend to suicide, my symptoms started in 2012 with anxiety, fatigue, body pain, and some days feeling like I couldn’t get out the bed. My levels of anxiety were building. Everything made me nervous and my emotions were out of control. The slightest things either angered me or made me cry. Most days, I was my “normal” strong self, but some days I just didn’t feel strong at all. I felt weak. I felt lost. I felt like I was losing my mind. Despite the many good things going on in my life, I felt sad most of the time. On any given day, I felt achy in different parts of my body, and sometimes, in every part of my body at the same time.

I didn’t understand what was happening because prior to this time, I was extremely active, healthy, and social. I spent a lot of time with friends and family and almost always showed up to anything I was invited to because I truly enjoyed being around people. As time progressed, and the symptoms increased, I became more depressed, frustrated, and wanting to avoid people. When the physical changes started to happen, I couldn’t explain them. I dreaded the shocked look on someone’s face if we hadn’t seen each other recently and they saw how much my physical appearance had changed. During all of this, I still tried to maintain my normal activities. I went to work every single day in pain and never said a word. I would work long hours in pain, then stay up most of the night because of pain only to wake up exhausted. This became the routine of my daily life.

My breaking point came when I started to see the change in my daughter who was about 8 years old at the time. She became afraid to leave my side and worried about me being alone. She was the only person whom I could not hide from because she experienced my episodes of uncontrollable crying and sadness many days and nights. I knew I had to figure out a way to pull myself together. I decided to stop feeling sorry for myself and to stop questioning “why” this was happening to me. I chose to change my mindset and to believe that there was a reason bigger than me for what I was experiencing.

Through prayer and faith in God, I believe I was purposed to have this experience so that I would be able to help someone else. That faith and change of mindset allowed me to be more transparent about what I was going through. It also pushed me to advocate for myself and take the lead in managing my health.

Over the course of two very long and painful years, I experienced anxiety, hypertension, diabetes, hair loss, extreme weight gain, blurred vision, memory fog, severe depression, joint pain, loss of my menstrual cycle, hot flashes, easily bruised skin, muscle weakness, and fatigue. I went back and forth to my primary care physician with no results. I spent those pain-filled years in therapy regularly, finally seeing a psychiatrist and began taking antidepressants.

My Rheumatologist was treating me for Fibromyalgia and trialed me on many different medications before I decided to stop them all because I was not getting any pain relief or rejuvenation of energy. Ultimately, after revealing to my Rheumatologist, the final symptom (my buffalo hump) that I had been hiding, he described Cushing’s disease and his suspicion that this disease might be the source of my problems. I went back to my primary care provider with this potential diagnosis, and after some reluctance, she wrote an order for my very first urine cortisol test. Due to the extremely high results, I was quickly referred to my amazing endocrinologist, Dr, Kharlip, whom, after a series of tests that resulted in more high cortisol levels, high ACTH levels, and an MRI that showed a tumor on my pituitary gland, confirmed a Cushing’s disease diagnosis. I had my first pituitary surgery on September 25th, 2014 and after a few months of recovery, I began to regain my health. I spent the next 2 and 1⁄2 years in the best health of my life. I regained my energy, the hypertension and diabetes resolved, my hair grew back, I lost 50 lbs, my menstrual cycle returned, and my skin cleared up.

However, in late 2016 I began to experience the symptoms of Cushing’s returning. After a series of odd health occurrences including a bout with severe anemia and iron deficiency, I developed a deep vein thrombosis in my left inner thigh. I was hospitalized and started on anticoagulants (blood thinners). Shortly after that hospitalization, my cortisol and ACTH were found to be high, and after another MRI, I was re-diagnosed, and another tumor was found. This second bout with Cushing’s has hit me hard emotionally because I wasn’t expecting to experience this debilitating disease again. I pushed hard on my faith and submerged myself even more in supportive communities such as the Conley Cushing’s Disease Fund as I prepared for my second pituitary surgery on September 22nd, 2017. This last bout with Cushing’s came with a 50 lb weight-gain in about 6 months. However, 6 months post-surgery, I was able to lose 45lbs and finally wean off Hydrocortisone. Yet, while I am tempted to celebrate the death of Cushing’s disease in my body, now 11 months post-op, I am currently retesting for another recurrence as my levels have peaked again.

I have come to realize that Cushing’s may always be a part of my life’s journey and challenges. I am not happy about this potential 3rd setback, but nor am I bitter or angry.

I will continue to fight with everything I have to overcome this disease, advocate for myself and others and, continue to live my best life on purpose.