Not Quite the Big ‘R’, But Close
Thursday of last week was a big day for me. Actually, scratch that. It was a huge day. A milestone. That Thursday, every moment of pain and struggle over the last two years finally amounted to something wonderful. In revealing the results of a recent kidney biopsy, my nephrologist said a single, triumphant word that rocked my system like an earthquake: “inactive.”
In May 2016, ironically during both Lupus Awareness Month and that year’s Kidney Awareness Week, I was diagnosed with stage IV: lupus nephritis. This year, my story came full circle, and for the second time in my life, May brought a monumental revelation. Every tear, every sacrifice, and every moment of frustration became worthwhile upon hearing that I’m finally gaining distance from that monster of a wolf and am out of the woods.
Hearing that my lupus is for the most part inactive left me feeling the exact same way I did the day of my diagnosis: shocked. It was déjà vu. Once again, I found myself walking around in a cloudy daze and nearly bursting into tears when I finally wrapped my mind around the doctor’s words.
When it hit me, even the idea of telling my family and my boyfriend was enough to reduce me to a blubbering mess. The happiness was overwhelming — it literally overflowed and poured out of me, with tears streaming down my face and pooling on my lap. Even as I write this nearly a week later, the emotion is still so raw. The back of my throat aches and my eyes are dangerously watery for sitting in a university library. But it’s a testament to just how much of me has gone into battling this illness, how intensely it has taken a toll on my life, and how proud I am of myself for making it here.
It might not be remission, but it’s a start — and a damn good one at that. This is not the last time I will go through this cycle with lupus, and it’s unlikely to have been the most difficult encounter, either. I will spend my life going through the phases of flaring with active lupus, going through treatment, rendering it inactive, and coaxing it back into remission for the rest of my life. And every time I make it to a victory point like this one, I’ll cry shamelessly, as this is a moment of true triumph.
I never knew the word “inactive” could mean so much to me, but in the context of lupus, it means everything. It means that for the first time in two years, I feel lighter with the knowledge that my body isn’t under the constant attack of my immune system. It means that for the first time, my doctor has had enough confidence in the state of my health to look at incrementally weening me off corticosteroids completely. It means that for the first time since being diagnosed with lupus, I feel like I can breathe again!
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.