juliet capulet you are so important to me personally. you get so much shit for being a 13 year old in love but you are so smart and witty and fun. i was you and i wouldve been friends with you. you will forever be so cool to me.
What About Recovery? A year-ender account about almost dying
I'm still in recovery, but I owe myself this story.
(October 2018 at Pundok Katitikan: Conversations about Creative Writing)
When 2018 started, I almost died. I wish it was an exaggeration or an effort to make this story more dramatic than it really is—even the realization only came months after I came out—but after spending the first three days at the hospital surviving on nothing but the dextrose bag, it places things into perspective.
On my brother's 23rd birthday, I was rushed to the hospital because my stomach was hurting, similar to the pain you feel during a hyperacidity episode. Except we later found out it wasn't hyperacidity because the usual "sit up straight so the acid goes down" didn't help ease the pain. My parents and my brother had dropped me off at our condo and they had actually already reached our house in a different city when I called and asked to be brought to the hospital. I had puked my entire dinner—sushi, tempura, and miso soup—and I left the sink smelling like vinegar.
I could barely stand from the pain. Curling up didn't actually help it, but I didn't know what else to do. I wanted to poop as well, but nothing would come out. The pain just kept on coming in waves.
I think I spent 5 hours in the emergency room. I was placed in reverse isolation because of my lupus. I couldn't be placed anywhere near anyone who was carrying any type of illness. Even the simplest fever was already contagious for my immunocompromised self and, given that it was late night in January and the New Year blues was starting to roll in, sick people arrived in groups.
They couldn't figure out what was wrong at first. I was given antacids, Gaviscon, but I'd puke it out. I was exhausted, but the pain kept me awake. It was difficult and everything was starting to look blurry. Pain like that really messes with your head. I don't even remember being brought to my hospital room. I only remember being in so much pain.
The pain didn't stop when I got to the hospital room, though. The warm compress they gave me helped a bit but not always. I tried to eat several of the soft food I was prescribed to eat, but I could only puke it out. I wasn't allowed to drink water, either, because it would mess with my stomach. I was so thirsty because all I did was puke. I'd look at the bottle of cold water on my bedside table and feel like crying. I was kept hydrated through the dextrose.
Never had I been so deprived of water before. I had never felt that much thirst before.
This went on for the first 3 days. No food nor water would come in, but I kept spontaneously defecating through my pants and my shorts as my stomach started healing. I kept puking. I couldn't control the defecating. For the very few times I did have a semblance of sleep, I remember wishing to die instead. I was so tired.
By the 4th day, I could bring down some of the food. I could take sips of water. Things were starting to look up, but of course, being a lupus patient, it didn't stop there. The shit my stomach went through caused a flare in the lupus and I was faced with the monster version of something I'd been suffering from for years: lupus nephritis.
My kidneys stopped doing their job. They got tired, like me. I couldn't filter and pee out any of the liquids I drank. The dextrose liquid went straight to my feet. Later, I was told it could've led to kidney failure.
(My feet swollen from the edema, February 2018)
I'll spare all the other gorey details, but here's what needs to be known: they transferred my IV insertion site three times. I cried for all of these three times. I got an endoscopy. My stomach had existing lesions because of the maintenance medication I'd been taking over the past 6 years and the sushi I ate, because of the vinegar in the rice, triggered a reaction and created a hole in the lining of my stomach. They had to sedate me for the endoscopy. I woke up in a different bed with no memory of what had happened. It was all so surreal.
The final diagnosis was acute gastritis with moderate dehydration, hiatal hernia, and, of course, lupus nephritis. I left the hospital with my entire body swelling from the edema. I was, essentially, a PWD. I couldn't walk without the help of my mother or anyone else. I had to take 14-17 tablets in a day because I had insisted on getting out of the hospital despite the fact that I hadn't fully recovered. I was desperate for any sense of normalcy. I wanted things to go back to the way they were.
But, of course, they couldn't. This was a flare so impairing that I had to go through chemotherapy again. For the first month out of the hospital, I had to limit my water intake to just a liter per day because my kidneys couldn't take the load. I'd sometimes wake up with a swollen face. I'd sometimes be shaken awake by late night arthritis attacks, like cramps that wouldn't stop. I couldn't walk properly and every time I sat down at a group meeting for a project, I had to elevate my feet.
My anxiety worsened. I started to have panic attacks in the middle of doing homework at night. I'd snap at people I love. I'd yell at my parents and I'd fight with my boyfriend. I was being difficult and no one could understand the position I was in. I was just so angry. I was just so desperate for things to go back to the way they were.
(Me with my brother, February 2018. My face is swelling here)
I wanted things to be back to normal. I still went on with school as normal, only missing the first two weeks. I even wanted to go back to my org work (I was handling 4 organizations at that time), but between going to the hospital and handling my academics, I could only do so much. Still, I tried my best, anyway. I helped out with the student movement with small things like writing statements and creating pubmats. I helped out with the creative writing organization and the student publication especially because I have positions in both. I managed to stay on top of my academics as well. I even went on to do my internship.
It was weird to do all this post-hospitalization. The time in the hospital really messed with my head. When I got out, I couldn't remember how I interacted with people. I couldn't remember what I was like. For somebody so self-aware, this felt like I was losing control of myself. I couldn't remember some names. It was all so weird. My boyfriend calls it being "unhinged" and I think that's the best word for it. I was unhinged.
Despite my best efforts at keeping everything the way they were, nothing could ever be the same. I was in denial. Some days I think I still am. I cried a lot. I couldn't grow hair. I think I didn't have armpit hair for 5 months. I couldn't accept that I had gained so much weight in so little time. I went from 46kg to 56kg in the span of a week. I had already had weight and image issues way before I even knew about the lupus so to have this happen to me was a huge blow to my self-esteem. It didn't help that, months before that, I had gone on online shops and looked for nice clothes and dresses, outfits that deviated from my usual shirt-and-jeans. I was consciously taking the step to be more confident in myself, but the lupus killed it instantly.
(December 2017. See? I was starting to wear cute clothes.)
To this day, I'm still trying to lose all that weight and it's difficult to see the silver lining in everything until I do. I know, it's a shallow concern when compared to almost dying, but all my life I've been told that fat is bad, that fat is shameful. I grew up thinking I was fat when I wasn't and when I did get fat, I could only cry for that lost time.
(July 2018)
I was depressed. I think I still am, even worse now that the one year mark since I was brought to the hospital is nearing and I'm still far from recovering fully. On my boyfriend's birthday, I sent him a letter about how grateful I was for his existence and part of it included a confession: if not for him, I would've already killed myself by April.
(Of course, my family and my friends factored in my decision not to kill myself, but, hey, this was a letter for my boyfriend.)
This is what movies and books don't tell you: recovery is ugly. I hate every second of it. I'm not the type of person to have regrets, but, boy, do I regret eating sushi on my brother's birthday. I feel guilty that I can't seem to be happy that I'm alive and I'm surviving, but this incurable illness made me taste what it was like to be "normal" and then it took that from me all of a sudden. It was like standing on a rug and having it pulled from under me.
Most of all, and I only realized this recently, I hate myself. I am angry at myself. I blame myself greatly for almost dying. It was my fault in the end. Before that whole thing, I had been skipping meds, one of them I secretly stopped taking for a year, which contributed to my kidneys never getting better. I skipped meals. I pushed myself to my limit. I never knew what limits meant. I always just treated the lupus as a minor inconvenience, not something that should be handled with utmost care. I didn't want it to become a hindrance in my life. I guess I was in denial. Six years in and I was still in denial.
This is weight I still can't overcome. Some days I still imagine myself jumping from the balcony of our condo on the 14th floor. I never do it, of course, but I came close one time, just recently. I hurriedly booked an Angkas that night to go eat my favorite meal—pesto porkchops from The Brown Cup. I don't know what I was thinking. Probably a last meal of sorts. But I got to the coffee shop and found my brother and his girlfriend there. Somehow, it was the universe telling me something.
I've just finished my first semester as a graduating student. It was a tumultuous semester. I had thesis, a training subject, 6 organizations, chemotherapy, regular hospital visits, all my other subjects, going out with friends, and several family matters. But I'm proud of myself, anyway, for surviving. I became what I would call a "scheduling god." I'm still on regular status despite the lupus. My Psych professors wouldn't allow me to give up on myself. They did their best to help me, allowing me absences and considerations for their classes. It was kindness like this that would push me to continue.
(Indignation protest for the killing of the 9 farmers in Sagay)
My mom was the most patient with me. She stuck with me throughout the first few months of my recovery, ugly moments and all, until she eventually had to go to Bohol to be with my dad. I try not to let her worry too much by taking care of myself. Her patience is helping me recover, too.
Somehow, I managed to accomplish a lot this semester. I became a mass leader and started speaking at protests. I still continue helping organize the national democratic movement in my city in between chemotherapy sessions and hospital visits. I couldn't let the lupus take me away from the important work of liberation. If I was having difficulty with my illness, imagine everyone in urban poor communities or in the countrysides who remain undiagnosed to this day. I am sick, but I'm still privileged.
(December 2018)
I did a lot, some beyond my limits, and maybe it's overcompensation or me making up for the lost time, but I now have tons of backstory to bring with me to the future. This post is already long enough as it is.
(November 23, 2018. Commemoration of the 9th anniversary of the Ampatuan massacre)
I tried my best to summarize this whole experience, but recovery can't be placed in a nutshell, especially when you have an incurable illness. Every day is different for us. So maybe this is a work in progress, like I am a work in progress. I'm happy and thankful for everyone who has continued to support and love me. I promise to do my best to do good by all of you. You all took part in helping me recover.
I hope 2019 brings itself more wonderful experiences. My strength was tested so much in 2018 that I don't think there's much left to test. I like to think my spirit is ten times more unbreakable now, living up to my self-proclaimed title of being an "Unsinkable Ship." I cry easily, but I always get back up.
In the past, my insurance company has dragged its feet in approving a medicine I need. This medicine was supposed to drastically cut the number of pills I would be responsible to take on a daily basis - which would help with a whole slew of things like my stomach pain, grogginess, and even the dizziness I experience on a daily basis. Of course, the idea of this medicine was like the holy grail.
I was taking 12-14 pills a day so this felt like someone throwing me a life preserver when all hope feels lost. It was a different option that might have actually had the power to turn this year around, and maybe make the next year just a little better. I felt like all I needed was a little positivity, not a battle with a health insurance company asking me questions for answers they have already received.
That’s when it really hit home for me. The health care system was and still is in shambles. The money seems to always find a way to pay for more of the same medicine but never new ideas that could lead to a possible cure for many diseases, not just my own. We rally Congress for funding for a cure, we host walks and fundraisers and raise hundreds of thousands of dollars, to lose every bid at a cure to massive insurance conglomerates.
Big Pharma may as well break into my house and take me hostage.
My health depends on stopping some of these other medicines that can and eventually will, cause irreparable damage to other parts of my body. It’s hard to accept that their expectation is for me to exist with this disease on their terms.
Big Pharma doesn’t care that the course of medicine I am on, and have been on for years, has rendered me infertile even further than my disease already has. They don’t care that the chronic inflammation in my body has not gotten better in the five years I have been on this course of treatment. As a matter of fact, even with all the medicine in my system, I have gotten worse in the last two years as if the medicine, my “only” hope”, has also given up.
Big Pharma doesn’t understand that my life has been changed, irrevocably, since this diagnosis and the medicine I am taking has not given me the relief promised. Everyone around me is confused - my treating physicians, my family and even me. I have not reaped any benefits or rewards from the miracle drug.
So I want to try the new version of the miracle drug, and I think I deserve that chance.
It is hard to understand how it is possible that a health insurance company, an entity that has nothing to do with your care and does not know your case as personally as your doctor does and should, is allowed to reject a prescription request made by a physician involved directly with your course of care. How is it fair that a company can dismiss the recommendations of a physician treating someone with an incurable disease.
This seems ass-backward and a horrible way to treat people who are battling anything. It is also dismissive of a person’s health struggles, from what they have been through to what they think they are about to face.
The medicine in question was Benlysta, an injectable medicine that is NOT fun in any way shape or form. I have to take it once a week, it does nothing for pain, makes me exhausted and to be honest, I hate it. But if it is something that is going to help me be here for my family, which is the end game when we all come to think of it, I need to take it.
It is not an opioid or a painkiller, which really do not exist in my medical treatment plan believe it or not. This is an actual medicine that may slow the progression of the Lupus and allow me to walk more than a block without feeling like I ran a marathon. Something that would allow me to walk down my front steps without wincing in pain or getting dizzy. Something that might stop the pain by stopping the disease not just masking the ache, and heaping more of that ache on.
Insurance companies don’t understand how hard it is to even accept that you need these drugs - drugs that will actually help you live not just exist - yet they make it feel like your fight isn’t worth their consideration.
It took me a long time to get to a place of acceptance, so when I run into an obstacle, especially an ill-informed one, the anger sets in. Feeling the need to prove your disease is something no one does well with, trust me.
I start to wonder about where companies like this stand and how unfair it is to be treated this way.
But all the health insurance company sees is their costs and loss, not mine.
