As I was writing the title I started humming Adele’s song but soon realized the fire started in her heart. Also, to be more accurate the fire started in my left eye years ago, and now transferred to my bones. After nearly two months of back and forths in different hospitals and five doctors…I finally have a diagnosis!!! Who would’ve thought that my eye and back problems were connected 🙈
(Also quick side note I’m quite heartbroken but still happy for Harry if he were really dating Olivia but it admittedly sucks that the news came out a few days before my first treatment but I’ll maybe write about that in another blog.) (Maybe.)
So, drumroll please….I have Ankylosing Spondylitis! A rare auto immune disorder for a woman as young as I am but here I am, continually going against the norm. I pat my 17 year old indie-music-loving self on the back for being such a rebel. To those who don’t know what auto immune disorders are, please look it up 😂 but to put it simply, my immune system is now attacking my body. Specifically my eyes and my bones.
I did a series of tests in December and tested positive for the markers of this auto immune disease and I have been doing everything I can to help myself get better. Tomorrow will be my first treatment session and i will be using the same medicine used for chemo since AS doesn’t really have a cure yet.
I’ve been sleeping at 10pm now a far cry from my 4 am that I am used to because of work and I wake up at 9am now. (I’ve been doing this for 4 days and I’m very proud.) I know, I know…I’m writing past midnight. But I am a bit scared for tomorrow. Also my bones (like I said) are on fire right now and I refuse to drink a painkiller a few hours before my first treatment. The goal is to keep my body alive. Not kill it more. So I’m trying to lessen the painkillers. This of course is not ideal since i feel the pain from my neck to my toes. The blue part of the flame of my “imaginary fire” being in my lower back area and thighs today.
I’m hopeful though. I’ve had a mix of feedback from family and friends. A good divide of opinions on western and eastern medicine. Not good for me, since the divide didn’t help me choose too much. But the discussions were all informative. albeit, overwhelming.
I also start filming next week so I’ve been on zoom calls every night to check locations, costumes, to be on top of preprod meetings. But I often find myself quiet in these meetings. Beneath the coverage of my camera are booklets from my uncle who is a holistic doctor. So as we discuss the locations for certain scenes, I’ve been reading up on what leafy vegetable I should have. I feel guilty about it sometimes. But I also need to stay alive.
So as you can probably tell, I wrote this because I need to decompress my brain of it’s thoughts. Before opening my WordPress app, I was reading up on the benefits of celery juice in the morning for people with auto immune diseases and I somehow spiraled down and found myself on someone else’s account and was trying my best to remember her recipe for a roasted delicata squash dish until I started wondering if we even have these kinds of squash in our lovely country. That thought was put on standby by another thought. I was thinking of how much I actually need to do on set and if I’m ready to work already. That one too was put on hold as I imagined the needle that will poke me at 11 am tomorrow. You see, my minds been a mess. I’ve been a mess. And I’m sorry for it, but right now, I really don’t know what to do because all I honestly think of is extinguishing the fire in my freaking bones.