MY JOURNEY TO DIAGNOSIS
It took about 4 years for me to be diagnosed with Cushing’s disease. The whole time, I knew something was wrong. I had body pain that I couldn’t explain. I couldn’t go a day without washing my hair because it felt so greasy. I had issues with digestion, high blood pressure, hair loss, insomnia, weight gain, memory, and fatigue (just to name a few).
I kept track of what felt “off,” and how I tried to address it. For example, I knew my doctor would want me to try changing my diet because of my weight gain, so I took it upon myself to do it first. That way I could tell her, “It’s not that. There’s something else going on.”
In 2020, I asked for my cortisol levels to be checked. They were high. That’s when things started moving. I was referred to an endocrinologist, who ordered an MRI. The MRI showed that I had a pituitary tumor. Finally, the reason for why I had been so miserable! I was diagnosed with Cushing’s disease and scheduled for brain surgery to remove the tumor.
I would soon find out that surgery isn’t a cure-all. My surgery was considered successful, but that didn’t mean that all my personal Cushing’s disease problems would disappear or that I would suddenly feel great. I couldn’t physically lift a glass of water without using 2 hands!
I wasn’t prepared for what surgery recovery would be like, or even what life would really be like afterward. That was probably the biggest challenge. Because Cushing’s disease is so rare, my doctors also faced challenges in guiding me through planning for surgery, and while tapering me off steroids after surgery. And of course, all of this was at the height of the COVID-19 pandemic.
It took months for my energy to come back. On the plus side, I have learned to be kind to myself, celebrate small accomplishments, and appreciate things on another level. My husband has been a huge support to me as well.
MY MESSAGE TO OTHERS
You have to help your doctor help you. I even had a nurse tell me that my diligence is what helped me get a diagnosis. Keep track of what you experience so you can paint an accurate picture of what’s going on. Ask questions. Do what you can to manage your expectations. Lastly, find the right endocrinologist. This will be someone you feel comfortable with, who listens to you, and who helps you with your Cushing’s disease journey.
Also, if you are diagnosed, do whatever you can to learn about Cushing’s disease. The more I learned about it, the more motivated I became to help myself and help others.
Remember, your journey might not be about getting back to normal—and that’s OK. It can be about finding a new normal that is completely fulfilling in ways that you may never have considered. For me, I became the Associate Director of the Cushing’s Support & Research Foundation (CSRF). Through my work, I hope I can help others.