My Journey
Fifteen years ago, when some red itchy dots invaded my legs. At first, we thought it's a mosquito bite. But, every day the number of dots started to spread in both of my legs up to my thigh. It's very ugly and I hated seeing them, it's not my skin, what I said in my head. Later on, those red dots started to become itchy and started to look like bruises. My mom applied some warm compresses on it, it became itchier. Then she put on the cold compress, it seems the magic worked. The dots started to look reddish dark bruises but no more itchiness.
After a week, I began to have chills and fever every night. I thought it will go away. But the worst is that I kept on vomiting my food. I can't eat, anything I take, I will vomit. Then, the most frightening part, I peed with pain, and the color of my urine is like a tea.
My mom told me to see the doctor. My doctor asked me to have some lab tests. She then asked me to bring in mom and dad so she can talk to them. My stepdad talked to her and told him that I need more tests to confirm if I have Lupus. Back then, my parents don't understand its risk so, I never get any confirmatory test.
After 5 years, I flared. This time, it's tea-colored pee, bipedal edema, and extreme exhaustion. I once again went to the doctor, got myself tested. She referred me to a nephrologist. The nephrologist asked me to have a biopsy. From then on, I'm diagnosed with IgA Nephropathy. Since I don't have complaints about other symptoms of Lupus. From then so, the doctor told me that after 5 years the disease will repeat itself and will find me under dialysis. That's so mean right, I am 19 back then when I'm hearing those.
Guess what, it didn't repeat itself right away. I surpassed aged 24 and kicking alive and not in dialysis. In the 6th year, I flared with high Uric Acid and Cholesterol in my system. I changed doctors then due to my current job. The doctor didn't ask me any further questions. She followed my biopsy result and treatments. I complained about my joint pain in the knees and wrist. The doctor didn't rule it out since I have high uric acid in my system.
That time I am having gout attacks and joint pains. I asked myself, why would this happen if I only eat the right food? I always take care of what I am taking in my system. I make sure not to eat anything that is prohibited or something that will go against my health. I asked my doctor about this, and she didn't give me any explanation. She told me that it can be by stress and poor food choices. By which I felt offended, so I no longer asked. I will never choose poor food choices because I am living with my best friend back then. He always taps me when I lost myself about diet. He always reminds me of how my mom passed away and how aggressive the disease went.
In the sixth month, I am still sharing the apartment with my friend. I remember waking up, my whole body feels so tired. I tried to stand up, but the whole place is shaky and my eyesight is doubling. I manage not to fall by leaning my body to the walls of our apartment. I was able to go to the bathroom and pee. While peeing, I can feel numbness on the half of my face, my world is like turning round and round. I don't want to wake up my friend as he is from the night shift. He had a gym earlier so he went home late, that's why I won't bother waking him up.
I tried to call the ambulance, unfortunately, I don't have a load to call the ambulance. I always keep an extra bag filled with clothes and necessities so whenever I need to travel or something emergency occurs I can just grab it and go. Sadly, that thinking of mine came to life. Here I am feeling dizzy, somehow soon to have a stroke, or heart attack or whatsoever. The next problem, I can no longer stand up my dizziness is insane and I don't want to hit that floor.
I crawl down the stairs from the 3rd floor to the ground floor. I stood while leaning on the walls to the main gate. I called a motorcycle driver to bring me to the nearest hospital's ER. When we arrived, the driver forgot that I am the patient. He let me stood in front of the gate until the guard saw me panting. All with me are my medical records and some clothes. They brought me a wheelchair. Inside, at the ER front desk, I lost consciousness right after the nurse tries to interview me for my medical history. All I remember I am handling her my clear books of medical records.
I woke up, and they told me that they gave me some medicines that calm which I can't recall the meds name at that time. My head is foggy. I was soon released from the hospital though.
I went to my nephrologists then to tell what happened. He told me he's already trying to rule out that I have a different disease that's somehow overlapping. By that time, I don't lay much attention. I guess because I only go to my check-ups alone. Also, I am scared to find out anything crazy is going on. We continue my medications until remission. I didn't show any other symptoms aside from the almost heart attack thingy.
Another year passed. I am very happy because I am at the peak of my career. I passed a New York Film Academy scholarship for Harvard University in Massachusetts. I only need to attend that interview and project the character I made as an entry for a short film. It's the cloud 9 of my life. I never thought that my dream of studying filmography is coming to life. I am also for promotion as Marketing Director for IMG in Macau. Lastly, an impressive job for the SEA Games Committee. Then in just one click, I woke up, my whole legs are swollen. Tea colored urine. Fatigue. Fever. I remember myself repeating, "NO! NOT NOW!" repeatedly with some vibration in my tone that I like to cry.
I'm staring at the wall of the hallways of Makati Med. Thinking nothing, and hoping that this flare isn't something worse. The secretary called me as if I am way far away from the door. I stood up and enter my doctor's clinic. I told every detail to my doctor. He gave me tests, shown the result, and took medications.
After one week, I went to my doctor complaining about the rashes, swollen legs, and joint pains. While talking he noticed some hair falling from my head. Then he told me, "Isn't it possible that you have lupus?" I looked at him appalled. I continued to pretend I am emotionless because inside me it feels like that a glass of iced water is poured in me. The feeling that my pediatrician is correct as early as my high school year. I almost breakdown. But before that happened, my doctor explained to me that Lupus can be tricky and misleading. He also explained that misdiagnosis comes with Lupus. Some patients take 10 years to 20 years to finally get the right diagnosis of Lupus.
He tested me for Lupus. It's exhausting for me to go back and forth to the hospital. I also need to leave work to make attention to it. I also need to battle with consistent fatigue and joint pains in the morning. There's the agony of wanting to know the result immediately. The sorrow of being alone and independent in the city. The worries and fears. You may feel how's my world having a war inside me.
The next visit is the confirmation of the tests. So I made sure to bring someone with me, unfortunately, my friend didn't come. I was there nervous, and the feeling of retrospecting to your past life. A life that's been back and forth to the hospital and trying to learn the diagnosis. This time, I got so many butterflies in the stomach since I was with no one. I need to be strong and never break down inside whatever the result is.
Ms. Leonard called the nurse. I went inside, my doctor looked at me and asked me why you came alone? I said, Uhm, nobody cares for me here so I am alone. He read the results and slowly told me the result. It's positive and referred me to a Rheumatologist. He apologized for billion times for the 8-year misdiagnosis of IgA. I can't blame him or anyone. He already mentioned to me that misdiagnosis is part of this disease. Then he discussed to me some patient education about the disease. Which obviously, I didn't take time to absorb. Everything is overwhelming for me. Out of nowhere, I asked him about my mom who had passed away, whom we thought that has the same disease as I have which is IgA. He told me, the way I talked to him about the aggression, it is Lupus too.
I remember going out of that clinic. I sat in the waiting area and tried to internalize everything I heard from my doctor. I stared at that paper with a long list of tests, I am completely perplexed. Imagine, discovering that I spent money on the medication of myself for 8 years for the wrong disease. They treated my mom and died from the wrong disease. How can I trust doctors now? Yet, I know the sincerity and honesty of my new doctor so I won't doubt it.
Together with the new results, I brought it to the Rheumatologist. At first, he won't believe me that I have Lupus. As soon as he interviewed me with all the symptoms, around 5 or 6 symptoms are checked including my current kidney complications. He confirmed it is lupus. All by myself hearing all this bad news. Going home alone and no one to talk to, no one's there to listen, no one is there to empathized or at least sympathized. I must have been carrying the world in my shoulder.
My Denial and Acceptance
I never thought that I will ever feel so overcome by Lupus. Probably, I felt so affected because I am now experiencing symptoms that my mom had at End-Stage Renal Disease.
There'll be days I can't get up due to fatigue and sometimes I think it is caused by my overthinking. I tried my best to distract myself at work, so I will stop thinking that I have lupus. It didn't work, the expectation from the office and the goals I am trying to aim at that time needs to slowly fade away.
Yes, that distraught me and completely taken away parts of me. I have to slow down. I let go of my flight to Macau as doctors advised not to travel because of the suppressed immunity. I need to quit my SEA Games application. I need to let go of the most important goal of studying filmography in abroad.
There'll be moments that I will stay inside my room, blankly staring and asking myself, what will I do now? I am very determined to resign from my work since it's no longer working out with health. I felt that I am lost amidst the darkness and nowhere to go.
One day, from work I want to go home, but my feet led me to the church. There are fewer people inside, I am just blankly staring at the crucifix. Thinking nothing, just listening to the complete silence. Slowly, my tears came out. Until I break through my posture and sob in public. I know it's embarrassing, but I just can't help but cry and sob. No one looked at me I guess? Honestly, I don't know. I took the hours of silence and the most relieving feeling from sobbing. If you're asking why am I sobbing? I honestly don't know, maybe because I felt so alone. I felt so lonesome, that I don't have someone with me to fight along with this. I also asked myself, what do I still have to have a reason to fight? Why should I continue to fight? Also, maybe, because I have so many questions of why me? What will happen to me now? If I resign what will I be doing? Where will I go? Will I be someone parasitic at home? By which so out of my league, because my parents taught great emphasis on independence.
I kept my time there until the afternoon mass is about to start. My sobbing had some part 2. The choir sang this song called Stay with me, Lord. It's a song from Padre Pio, music by Mr. Ferdz Bautista. Let me place here the lyrics:
Ferdinand M. Bautista
Stay with me Lord, that I may never forget you.
Stay with me Lord, because I'm weak.
Stay with me Lord, for you are my life!
Stay with me Lord, for you are my Light!
Chorus:
O how I need you my Jesus in this night of exile.
Stay with me my Jesus in the Breaking of the Bread.
The light which disperses all darkness.
The force that sustains me, the Unique Joy of my heart!
Stay with me Lord to show me your Will.
Stay with me Lord that I may hear Your voice and follow You.
Stay with me Lord for I desire to love You.
Stay with me Lord if you wish me to be faithful to You!
The time I sang along with it, all my sorrows, all my loneliness, all my worries, fears, and questions started to saturate. I am not a religious person, but I believe Him. That day, I know I didn't tell him that I surrender everything to Him but, I know that all these darkness inside me are withdrawn.
I walked out of that church with bits of light. Lights of hope. Lights of trust, trusting the process. Lights of life, to continue living.
My 15th year with Lupus
Today, I celebrate the 15th year of living with Lupus. Including the years of being misdiagnosed. All this time, I am with Lupus without concretely knowing it. I still feel blessed that it never went too aggressive that I needed to be frequently in the hospital.
I acknowledge the pain, sorrow, loneliness, and fears of this disease. It may be incomprehensible for many, it may be invisible, it may isolate you, it may make you misunderstood, selfish, and odd. You'll be prone to bullying, stigmatism, and illogical judgments. All of these lead me to make Live Love and Hope to focus on spreading awareness about Lupus. It's the reason why I transform my platform to be a safer place for anyone who can't be heard. For someone battling invisible pain. For someone feeling alone and sad on a challenging journey.
As I know how it feels to be alone, I know how it hurts you deeply when someone you love judge or misunderstood you. I want you to know that you will never be alone in this fight. Some Lupus support group is here. Live Love and Hope is here for you. I am here for you. NO ONE SHOULD WALK ALONE!
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