I was first diagnosed in 2006 with Sarcoidosis. I was told it was lung cancer and that I had 3 months to live. Then they removed the mass and said, “Good news, you don’t have cancer. You have sarcoidosis”. At the time, I was told, most people who have it are fine. It will go into remission, and there’s no treatment required.
What is Sarcoidosis, you ask? It’s a disease involving abnormal collections of inflammatory cells (granulomas) that can form as nodules in multiple organs. The granulomas are most often located in the lungs or its associated lymph nodes, but any organ can be affected. Sarcoidosis seems to be caused by an immune reaction to an infection or some other trigger (called an antigen, which may be from one’s environment) that continues even after the initial infection or other antigen is cleared from the body.
Now, here we are in 2014. It is in my lungs, spine, bone marrow, liver, eyes, hips, tail bone, skin and recently in my sinuses. They fear it is moving to the brain, so I am in the process of scheduling chemo infusions. Sarcoidosis is also called an “orphan disease.” They call it this because there is no cure, it’s not widely known about and research funding is limited, as there aren’t a lot of people diagnosed with this disease.
The hardest part of this disease is how it changes who you are. I am in chronic pain every single day. I feel like I have the flu on most days. I have gone through the scared phase, the angry phase, the sad phase, BUT I stay in the fighting phase! I am still working full time and singing in my band, and I hear people say, “Well you don’t look sick.” We fight so hard to hang on to our “normal,” and yet a disease fights just as hard to take our normal away and changes who we are.
I’ve learned it’s ok to let people know you are not strong every single day, that you have down days and sad days. I think it is ok also to know that we are not weak because we can no longer do it all. When anyone is fighting a chronic disease, you can lose who you are, and your family and close friends also lose you. It’s so important to fight the mental fight and hang on to your heart and soul and never, ever let the disease win, EVER!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.