Most of my Cushing’s journey has circled around important milestones in my life. I guess that’s what happens when you start to get sick during your transition into college. This was the time I was supposed to be learning, growing, becoming independent and finding myself. In a way, I suppose all of these things were still a part of my college experience, however, I also had to balance regular doctor’s visits and 24-hour urine samplings all while starting a new life in a new city on a college campus that was 6 hours away from home.
Most of my Cushing’s journey has circled around important milestones in my life. I guess that’s what happens when you start to get sick during your transition into college. This was the time I was supposed to be learning, growing, becoming independent and finding myself. In a way, I suppose all of these things were still a part of my college experience, however, I also had to balance regular doctor’s visits and 24-hour urine samplings all while starting a new life in a new city on a college campus that was 6 hours away from home.
I was sick for about 3 years prior to being diagnosed with Cushing’s disease in winter of 2008. Finding out that I had a microadenoma on my pituitary gland was a pretty scary thing to process as a 19 year old. The first matter of concern for me was timing. I didn’t want anything to hold me back from graduating with my newfound friends and regularly wondered how Cushing’s would further impact this phase of my life. Thankfully, I was able to have a pituitary surgery the summer in between my sophomore and junior year of college on May 20, 2009 and maintain my schooling schedule, even if it was more than a full year after diagnosis.
I made it almost 5 years in remission, what doctor’s view as a sign of a true “cure”. I had found a full-time job with benefits and a serious boyfriend; I was excited for what the future would hold. But if we were to have a future together, I realized I had to tell him that my Cushing’s tumor was back. I knew I would need his support during this difficult time. He walked beside me through all the testing and scans. Together, we tackled my second pituitary surgery July 3, 2013 after dating for only 6 months.
Thankfully my little tumor friend did not scare this man away. He decided to ask me to be his forever in May 2015. Unfortunately, it wasn’t too long after the engagement that it was confirmed yet again that my Cushing’s disease was returning for a third time. I was in my final year of graduate school, planning a wedding, and now, planning another pituitary surgery around these important milestones. I was able to plan to have my surgery over my Christmas break, November 25, 2015.
My recovery in addition to wedding planning and finishing a full-time graduate program was not, by any means, an easy journey. It is by God’s grace that I got through that time, and it is by His grace that I continue to wake up each morning and battle the long-lasting effects of this disease, both mentally and physically.
I believe that milestones not only call us to celebrate, but also call us to reflect on how far we have come. I reflect on 18 year old, undiagnosed Alyssa. At that time, I was scared and I experienced a lot of self-hatred and a lot of self-inflicted guilt for symptoms that I hadn’t yet been able to identify as symptoms. My greatest milestone of all was on September 18, 2016; it was a celebration of love and marriage. I was in a place where I was marrying a man who could confidently say he would be with me “in sickness and in health.” A place where I could acknowledge and accept that this disease will most likely continue to be a part of me for the rest my life, but it does not mean it will define me or ever keep me from truly living.
