After nine weeks of hibernation, today was my first time being out by myself for more than an hour. It has been a wonderful day spent walking around the SE Hawthorne neighborhood. I picked up a new book at Powells, window shopped, ate bimbimbap with no white rice, and worked at a cafe pretty much all day. So to reward myself, I’m seizing the energy and time today in hopefully capturing what life has been like since my recent diagnosis of systemic lupus erythematosus – lupus nephritis.
When I was laying in the hospital for five days at the beginning of October, I spent a lot of time thinking about the things I wanted to do with the rest of my life. It’s funny how cliche it is to only spend time reflecting back on your life and future desires when you enter a crisis. I didn’t have the energy to write or move due to the constant pain, therefore I laid back and meditated on every single moment that lead to my diagnosis – and the future possibilities of where I want my life to go.
Like similar stories you may have heard when people are first diagnosed with an autoimmune disease, I agonized over what I did to deserve my chronic illness. Did I really eat that badly? Did I not handle my stress well enough? I should’ve exercised more. Who the hell has an autoimmune disease in my family and how come they haven’t said anything?! But of course, none of this worrying mattered. Everyone knows that these things just happen. The disease chooses you, whether you’re the healthiest or unhealthiest person – and yes I do know people that are on both sides of the extreme and they don’t have an autoimmune disease.
After all the agonizing and stress of worrying about what I did to get to this place of pain, I went through a month of fully embracing the diagnosis. The month of October I spent alone in recovery as my partner left for a work trip in Tokyo and I was left to cope and heal with my two dogs. Luckily, a handful of good friends near and far came out to support in a myriad of ways and I’m still absorbing the amount of gratitude I have for everyone that has showed up for me. It’s in these moments when one gets sick that you actually realize who’s a friend and who is not, and because of this realization I have been mixed with appreciation and grief at the loss of certain friendships that have just, basically disintegrated. But the things that I was extremely grateful for during the 3 1/2 weeks that my partner was gone? Good friends, family, and delivery services! ❤
If you happened to keep up with my Instagram or Twitter feed, you’ll have noticed that I posted a lot over the last few months, chronicling on a weekly basis the status of my recovery. It almost became an obsession; I woke up at 6am every day to journal about my healing journey and then would post a couple of times a day or that week to Instagram about the new things I was learning about my condition. It has been both therapeutic and again, I admit, compulsive. But coming into this diagnosis and healing journey, I have lost all hiya (shame or embarrassment in Tagalog) and taken on the millennial catchphrase – YOLO. Besides, through all this posting and sharing publicly of my progress, I have connected with so many more people that also have an autoimmune disease and now have a network of folks to turn to for advice and venting sessions. It’s a wonderful thing to be connected to a community and I’m again, grateful for the love and support and to return the gesture for others as well.
My experience during this recovery period is somewhat hard to explain because having lupus or an autoimmune disease in general is based a lot on how you’re feeling, therefore the whole invisible illness or disability description of these diseases. So though I may look “fine,” inside my body is another story. Internally, there is a plethora of arranging, rearranging, connections, disconnections, muscle spasms, muscle dysfunctions, anxious thoughts leading to borderline depressive thoughts, cognitive impairments like brain fog or remembering things, and finally, my kidneys reorienting itself. To top that off, the medications itself can be a nightmare too, often being the case that I’m unsure if I’m having a shitty fatigue day because of my meds or because of the lupus. I’ve also dropped nearly 20 pounds, my hair is thinning (I cut it into a short bob to create the illusion of thickness) and I have discoloration in my skin. I sometimes don’t recognize myself.
Now in my 9th week of recovery (but really, a year of being sick overall), I’m in a place between apathy and hope. Being sick for so long is exhausting and I still continue to miss my old life, where I was able to move freely, think quickly, eat whatever I wanted, and had the ability to work on very little sleep. I am still mourning the loss and even on the days where I’m embracing this new way of living, I think I’m always going to think about her and miss her secretly.
The next step in this healing journey is knowing soon whether I’ll have to continue on my current treatment plan or switch to a more aggressive plan in order to speed up the recovery process of my kidneys. It’s a treatment plan that is no joke, giving me all the anxiety, so I’m doing my best to care for myself as I wait for the answer over the next week. Until then, my goal is to pretend to be normal because in some weird way, I feel just a teensy bit better when I’m pretending. This is not always the case, but on some days like today, it is. I’m holding onto the fact that my recent lab results are showing that there’s little improvement! I’m not near where I need to be, but I am slowly improving which is better than where I was a month ago.
Other things I have to look forward to? My web series, Gabby Smashes, is ramping back up again and I’m excited to show you all what my team of writers has been working on for the last few months! Get ready for season one!
I’ll also be back home in California for the holidays and I cannot wait for 70+ degree weather in December/January. Let’s hang out, yeah?