I have told my Cushing's story many times, to many people, in many different ways, and yet I am still finding out how little people know about how Cushing's has affected my life. That is just one of the reasons why I love the 30 day blogger challenge. Getting the word out about Cushing's is so important to me, because if someone had not shared their information with me I may not be here today.
So here is my story: I started to believe something was wrong when I was a junior in college, although in hindsight, looking back some subtle symptoms may have started as early as junior high for me. However, in college my symptoms became blatant. I started having problems with depression, low energy, and a severe inability to sleep and anxiety. I had some trouble in school, was sent home and told I could not return until I saw a psychiatrist. Which for me was just crazy because I have always been very positive and upbeat about life, I loved school, and all the activities I was involved in, but something was just wrong. I was wrongly misdiagnosed as Bipolar at the time, and for the next few years all of the symptoms I brought up to various practitioners were written off because of the mental health diagnosis. By the time I finished college I had gained about 60lbs from when I started, I suffered from insomnia, muscle weakness, and was very susceptible to infections. My plan had been to go to medical school after college but I was not doing well physically or mentally so I moved back home to Arizona and began a graduate school program in social work.
I actually did fairly well for a few years, my mental health improved, but I continued to gain weight and become weaker, and I was constantly plagued by infections. I sought out help from multiple medical practitioners. I was tested for everything from lupus to HIV to no avail. I had no answers, and more often than not was told that all of my symptoms were just in my head and due to me being mentally ill.
After I finished my graduate work I went to work as a social worker at a children's hospital, and after a few years I realized how much I missed medicine and I decided to try to get into medical school. In 2005 I was admitted to the University of Arizona as a new medical student, and things started off great. I thrived in school and loved living in Tucson. I was at my highest weight ever, but I seemed to be handling both going to school and working part time. But less than a year into school I came down with meningitis and after battling that infection things went downhill rather quickly. I was plagued with severe migraines that kept me from attending class. I had a very difficult time focusing and my memory was failing. For the first time in my life I was having difficulty with my academics. By halfway though my second year I was sick all of the time, amazingly fatigued, in constant pain, and drowning academically. However, something good did come out of all this. During a class one day on endocrinology we discussed Cushing's disease. I sat there with my jaw on the floor as the professor ticked off the signs and symptoms and I realized I met nearly every single one.
Around the same time my mom read an article in Reader's Digest about the 5 most misdiagnosed diseases and she told me she thought I had one of them. These incidents led me on the path to diagnosis. It was a very difficult, winding, and painful (both physically and emotionally) path, but I eventually found a doctor who would listen and actively worked to help me find answers. In 2009 I was officially diagnosed with Cushing's disease, and in 2010 I underwent an endonasal transsphenoidal surgery to remove a tumor from my pituitary gland at the base of my brain. After surgery I had about 6 months of feeling great, almost normal, but it was soon apparent that I had not received a cure from the surgery to remove my pituitary tumor.
I have spent the last 2 years re-testing, having MRIs, trying medications to mitigate my symptoms, and analyzing and weighing the risks and benefits of different treatment options. Finally, there is a light at the end of the tunnel for me, as I was recently cleared to have a bilateral adrenalectomy; a surgery where my adrenal glands will be removed. I will be trading Cushing's disease for Addison's disease, likely death for life long dependence on hormones, and hopefully pain and suffering for a new chance at life!
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