I will be turning 50 this October. I am a paralegal by day and a singer/songwriter, living my dream on the weekends, in a band I’ve been blessed to be a part of since 1999. We are a busy band that gives back to the community and are blessed to be able to.
I was diagnosed in 2006 (although I know I’ve had the disease long before then) with sarcoidosis. This disease is called an orphan disease, as there is no cure and there are not enough people (like in the hundreds of thousands) that have the disease, so research and funding is slow to find. Doctors try their best, but there’s not much that can be done if you are not one of the lucky ones that go into remission.
I am stage 3 in this disease. It is in my lungs, my spine (lots of lesions), bone marrow, hips and tail bone, blood and liver. I have had one lung surgery to remove a large mass and two spine surgeries to prevent paralysis. Treatment of steroids and chemo and antidepressants are offered, but they seem to do more harm than good.
It’s hard to breath at times. When I sing (which is my release to all stress and such a part of my soul), at times it makes me cry. My chest will spasm, feel like one big charlie-horse, but I try and fight through them as best I can. I wake every morning numb in my arms and legs as I have damage to my spinal cord from the disease.
I have been told to stop working, stop singing, go on disability and stop trying to still do it all. I refuse. I continue the fight. As long as I am able, I will work full time, I will sing in my band, and do the many benefits to help others. I will continue to pray and fight for a cure for this orphan disease that tries its best to ruin me. I will continue to Fight Like A Girl!
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 article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.