It has officially been 7 years since I started my Lupus journey. Oct 2016 I started my series of hospital stays when I legitimately thought that was gonna be it. I had lost all strength to walk, I could barely say my name and DOB, and I negotiated all my meds bc I just couldn’t anymore. I just remember barely being able to keep my eyes open anymore, and when I could I would just see aunties crying, so why keep them open anyway? I was done, and I was just waiting for the final diagnosis to tell me so.
But of course, the Lord pulls through, sends me who I still believe is an angel in disguise to give me my Lupus Nephritis diagnosis, and while there have been some stumbling blocks along the way, it’s pretty much been uphill from there. I’ve said it before, but I feel like I have the best case scenario when it comes to Lupus. I have been blessed with the best, most attentive medical team who catches even the slightest changes in labs, which means we can start any sort of treatment asap and nip even the smallest flare in the bud before it gets too big. The ways Lupus has affected my life in a physical way are very minimal compared to your average Lupus warrior, and I do not take that for granted. I am incredibly blessed with good health considering everything that happened, and I am forever dumbfounded and grateful for it.
However, as I’ve also mentioned before, the way Lupus has mostly impacted my life is psychologically. For most of my adult life, the Fall Season has always been difficult for me. A lot of tough things just usually happen to me in the Fall, including my Lupus diagnosis. And ever since 2016, whenever October rolls around, without even prompting it or consciously thinking about it, I become super scared and super anxious.
*nerd alert moment* Our brains have this alarm system that goes off when we’re in danger. It lets you know a threat is coming so you can act accordingly to take care of yourself. However, when someone experiences trauma, that alarm system is on overdrive and the slightest thing will cause it to go off, even if there’s no real threat. It thinks it’s still in that traumatic event, even tho that danger is no longer there. It’s like having a fire alarm in the house that goes off with the slightest bit of smoke in the house, and you yell for the nth time, “Ugghh, I’m just cooking! There’s no fire!” You can imagine the frustration and the exhaustion living in that state of fear and anxiety. – This was my brain after Oct 2016. It lived on hyperdrive, always on guard because I always felt like the other shoe had yet to drop, the end I feared in the hospital was still to come. But in the Fall especially, it’s like my alarm system could never turn off. Everything in me told me that I was back in that hospital room, and once again, this is it. I lived on extra guard during the Fall, while at the same time fighting to tell myself, “Everything is fine! There’s no fire!”
So I hated the Fall, I hated October…except this year. This is the first year I’m not scared. While it’s still not my favorite thing to recount those days in the hospital, I’m no longer living on guard with my alarm system on overdrive because, for the first time since then, I am finally grounded in the truth that I am safe. That yes, those days were scary af, but my lupus isn’t like that anymore, my doctors are confident in my prognosis, and if things do turn south, I am surrounded by the most supportive and loving community that I’ll need to get through it. For the first time, I’m not scared of my lupus, and I feel like I can start to live peacefully with it, finally coming to full acceptance of it. Took 7 years, but whatever! haha
There are many things that brought me to this point – therapy, medication, prayer – but one thing that has been standing out to me lately is y’all’s steadfast love and support. When I hated my Lupus, when I hated that I had to go through all that, when I thought it was the end, it was y’all that kept pouring in hope and kept shining the light, reminding me, “You’re safe now, there’s no fire,” over and over and over again. And I am literally in tears right now, overwhelmed by gratitude, because I know I don’t deserve it, and yet here you are.
So this year I just wanna say, thank you. Thank you for always showing up and for always keeping the hope, especially when I couldn’t myself. Your constant presence reminds me that I am safe, I am not alone, and everything’s gonna be alright. And that is probably the greatest gift you could ever give me through this whole journey.
Please consider continuing your support as every dollar counts! For every $100 you (and your company matching) donate, we will give you a bottle of wine (bc you know we love our wine ;))
I love you all! And I hope to celebrate with yall again next year!!