A normal day is like listening to the music my body plays. *Let me call her she because she’s quiet tender and delicate. Sometimes I hear slower rhythm. Sometimes I hear upbeats. Sometimes just the right mix. From there, I just dance myself suitably so I can hopefully relish a beautiful day every day.
I wake up at 6:30am to prepare for office. At least I’d need 1 ½ hours to get ready. Big chunk of the time actually goes to skin care routine. Living with Lupus means I have to apply layers of sunblock at least 90 SPF in face and body. This is to avoid butterfly rashes and other allergies when serendipitously exposed to sunlight. When at work, I grind with serene intensity. I find it very therapeutic so I happily work at my best. I’m usually just donned in pants, jacket and sneakers as I go around much hopping from one site to another and I only wear corporate apparel when the time suggests.
I prefer to meet clients in the morning when my reasoning is at its peak and send emails by noon when I’m less disturbed because everyone is out enjoying their lunch. Whenever there are no work sessions or meetings in the afternoon (seldomly happens), I typically proceed with all the paper works. By 6pm, I have to be on the way home.
The body plays strong and lively music during the day and I tend to sway my hips on every beat. At times, I wouldn’t notice any motion of pangs for I always get carried away. Hence, I just go on. However,when night befalls, accumulated fatigue would emanate the entire system (around 7PM) weaved with joint pain, headache, fever, itchiness or a combination of all. This normally happens when I insensibly overexert energy and waves during daytime. The body would start transitioning to a melancholic music – slow,slower to a mum and I just have to rock along with it through getting enough rest.
Sometimes I would’ve trouble sleeping when in flare or when pain reaches its zenith. Sometimes, I would have episodes of forgetting things or occurrences. Sometimes I just really want to lie down in bed as what the body dictates. It really depends on the severity of the malaise and exposure to smoke and sun light is a contributor second to contracting infection from anyone or anywhere. So, when rest is not enough, I rest some more to recover.
This daily routine is simply knowing the right mix to keep on moving forward. It’s balancing the common sense and physical amplitude – when is too much not much and when is less enough. When the mind desires for something, I always try to ask the body if she can sustain it. If the mind is incognisant, then I do a rain check. If it still insists, then I consult a friend to keep me prudent. It’s easy being said than done but getting back a good health is not an overnight work. I work hard for it every day.
I always wanted to share my story but I had initial fears that people may misunderstand and judge wrongly. However, many people had reached out to me after reading my blog post “Colossal Dream”. I thought better and said that many out there would see suffering differently when they know my daily battle with SLE. I realised that many still need help… and so I begin relating my personal life story – the saga of Ian – the Lupus Warrior.
The Early Years (2010). I remember back in College, I had dreadful itchiness all over my body and thought it was just a reaction from the food I ate or the change of weather. I self-medicated and tried almost all the cheapest possible remedies I knew. I took Citirizine (antihistamine) as recommended by a friend. I placed bisaya leaves on my skin, omega ointment or vicks, even reaching to a point of exposing the affected skin to charcoal fires just to feel a tinge of relief. The itchiness became incessant each day. It started sculpting an ugly map-scratch and it became more tormenting when the body’s saturated in water. Despite this time, I never thought of seeking medical attention from a professional. I endured it hoping one day it will just wither. I was floundering for two years but no one had noticed my plight for I carried myself well. Every mark was concealed through stockings and long sleeves, and that sweet smile.
Butterflies and Coins (2013). The symptoms came back after a year of working. One day, I just woke up with butterfly rashes on the face and massive joint pains. It was extremely harrowing that even the slightest movement would make me cry out loud. I self-medicated again and took pain relievers like Ponstan. It helped but the pain would recur after few hours. The rashes also started to emanate like red coins on my legs, arms and back. My eyes and lips were bulging at an incongruous extent. It was then I decided to admit myself into a medical care. I underwent series of tests and doctors confirmed something was wrong with my immune system (the part that fights off germs, viruses, bacteria and foreign invaders). According to them, my immune system cannot tell the difference between foreign invaders and my body’s healthy tissues. As a result, it created an auto-antibodies that attack and destroy healthy tissues. These antibodies are the carriers of inflammation, pain, itchiness and damage in various parts of the body.
The diagnosis. In short, I was diagnosed with an autoimmune disease called Systemic Lupus Erythematosus (SLE) or Lupus. According to doctors, only 10% percent of the populace contracts this disease. “Blessed me, I belonged to that 10%.”, I said, “Is there no way to find out how I got it?” Perhaps the accumulated stress from school and work was the biggest culprit or God had other plans – which I found hard to understand then.
I was then an academic university scholar and I slogged the hardest to keep outstanding grades (these are dedicated for my dad). Dishing that aside was also the pressure to be always No. 1 in the College of Arts & Sciences (CAS). People at school always expected me to be at the top and I guess I was a weakling to give in to that cuckooed expectation. I also had several curricular activities like being part of the college dance troupe; some modelling stints; and few outreach programs conducted. To earn extra, I was tutoring English to foreign students. I was juggling all these together with my On-the- Job-Training and finishing my papers (Baby Thesis). I was working very hard then to attain the highest academic standing in my school and the effort paid off when I finished with Magna Cum Laude honors. Later on, I continued putting the same hard discipline when I applied for my dream job in Ayala Land. I worked even harder to make it, regardless of the sacrifice.
The reality of SLE is disheartening knowing that I am an “animated human”. So, I kept it from everyone. I was too confident everything will be alright (with the help of pain relievers) for there are much more days I feel better than frail. The doctors could have just misdiagnosed me so I roped off the prescribed medication and played along as if nothing was wrong. I have also gotten used to going to meetings with a swollen foot or answering calls in the bathroom in such injurious position. “All is well. All is well”, I kept on purring.
The Fall (2015). Yet that was the most childish action I’ve ever done. I was in a Monastery attending mass and doing my prayers when suddenly I collapsed. When conscious I found myself at the Monastery’s guest room with a Benedictine Monk praying over me. I literally cannot move my legs and my head was searing like boiling 100 degrees. Helpless and feeble, I had to be brought to the hospital with the aid of an ambulance. Several tests were conducted and behold, my Lupus has whooshed like a rocket. It has reached some of the major organs as Skin, Heart, and the most strained of all –Brain– leading me to have episodes of seizures. (Seizure Disorder is the dominant sickness that comes with my Lupus).
I was shown that the reasons of Lupus Flares (they call it flares when all the symptoms come out) was the medication hiatus for 2 years. “Lupus can be controlled or managed but it also depends on patient’s cooperation and willingness to take the maintenance pills”, the doctor reverberated. I felt pity to my family who was listening with me (what have I done?) – so I promised to behave and take my medicines religiously (though how much I loathe oral meds and that steroid that makes me bloat). I was discharged and pensive for days. Perhaps I was too egocentric to keep secrets from my family. They deserve to know. For their solace and to give way to my health, I decided to transfer to a smaller company. At first, MSY was hesitant to hire me because of the ailment but I was sincere enough to convince them that I am a talent they can truly count on. And again, I proved myself unerring. Despite my bi-monthly trips to hospital due to treatment and routine therapies, I was giving the company a commendable and transcending performance. Shortly after, I was tagged as best employee of the year and was promoted twice in a year.
The discovery (2017). I was too religious with the meds and overdid it. Most of the time I take more. “Isn’t more the better and faster”, I soliloquised. The effects of overdosing stalled my system. I became more ill – in and out of the hospital and had undergone couple of procedures. Pain was perpetual and incessant. I had to quit my job and rest for few months. This rest has illumined my face as I was able to inaugurate a deeper faith and connection with HIM. It was God who chose this chic and this disease has brought me closer to HIM.
I also started traveling despite the flaming joints. There I saw the greater part of the world and thought it was beautiful. I met new faces. Some of those faces stayed beside me (human angels – Mo) up to this time. Some hit me hard for I saw how much they need more support than I do. Two of my favorite chics are Nikki and Dailyn. Nikki has Lupus Nephritis and is on dialysis. Dailyn has Lupus Meningitis and is bed ridden. God has also chosen them, his Lupus Warriors . Quiet often, I visit their houses. Seeing them just makes me genuinely happy and I feel like it heals me in a very special and spiritual way. With their permission, soon, I will write their wonderful stories too.
The sign (Early 2018). After 3 months, I decided to work again. I was ready, I pondered. I prayed hard to find a company who could understand my illness. The prayer was answered when I got a call from CLI. The company is run by people with big and kind heart who value life and work balance. I was surprised to know that there are 2 other employees in the company who also have Lupus. It was a sign and I took the job. I was doing what I love and it was very therapeutic – Business Operations (Leasing and Operations) – my forte modestly speaking.
The Mistake (end of 2018). For Lupus, you are not treating the disease but the symptoms. So, it can be reckoned that if you lose care, the body would just shut down (typical trait of an autoimmune disease). I got an infection that was left untreated for several days. I was given antibiotics but I mistook it as pain relievers. I took more than what is needed and had a serious influx. For 2 days in my apartment I was experiencing loud palpitation, shortness of breath and seizures. I had to be brought to the hospice for immediate treatment.
It was already Christmas holiday and most of the hospital staff were out to do the 24 hour EEG required by my doctor. Hence, I had to be transferred to a different facility and was confined to the Intensive Care Unit due to my precarious situation. I was spending Christmas and New Year there attached to so many wires and hooked up into a machine. Yet, I had wonderful memories there. I received gifts from friends and the ICU was always filled with joy, laughter, prayers and hope every time they are around (everybody looked so funny on their hospital gowns haha). I was really fighting well. I even thought I don’t deserve to be there. I was far away healthier from other patients with tube on their noses. ICU is dear and arid so I wanted to take advantage of the almost-undisturbed days there through reading and skimming my GMAT reviewers. Remember one of my greatest dreams? It’s also a way to check my sanity and balance for I still want to live my adventure.
Living the adventure (present). I am back at work with even greater aims and plans although my typical 24H is very delicate now (my next article). Timing and balance have to be laid down neatly. I have to carefully listen to my rhythm since the job could be too physical. If I am too strained or is exposed to sunlight, I get rashes, joint pains and become feverish. I also have to ensure to get a full rest and to never miss a single dose of medicine. Given my past mistake, my friend MO is helping me manage my pills. I believe I’ve arrived at the safest border just because I completely opened myself to people who wants to care. Lupus maintenance is expensive and I wouldn’t be able to sustain the expenses without help. Sometimes its hard to make both ends meet but God is kind. He helps me along the way.
Beginning Again. It’s a new year and I created a new list of remarkable bucket list activities. Big chunks of these are to visit more Lupus and cancer patients and create an official support group so we can comfort each other… (oh, and my travels too). As I mentioned, I do not know what are HIS BIG PLANS of my every pain and cry but I do know he wants me to fight well so all my suffering will never go to waste.
Life looks a little different for people with Lupus. Some are able to live a normal life while others have to deal with the outward effects of the disease, depending on the severity.
I was diagnosed with a disease admittedly I haven’t heard before. It started with a joint pain and a flu-like symptoms to which I thought was just the result of successive overtime at work. Not long after, I was feeling feverish, having rashes all over and getting more joint pain. It didn’t get any better week by week so I started seeking medical attention.
Lab results confirmed it was Lupus and I began seeing an expert called Rheumatologist. It was frustrating at first since I had difficulty keeping up with my normal pace, and because Lupus is invisible, some people started to doubt the veracity of the illness, telling me it is just all in the head.
Thankfully today, I am in quiescent state, although I feel some discomfort at times. Lupus has greatly influenced my day to day life. I need to carefully listen to my rhythm. I also have to think well before I make any actions and consider how it would impact my body. Fatigue is a big factor so I am always heedful on where I spend my energy. I work 5 days a week so I ensure that I work with serene intensity. Weekends are normally spend as rest days or for excursions. And whenever there’s a chance, I always see new places because it inspires me to fight harder (I’m seeing Baguio and Bangkok next month).
I have learned to live with it daily and you’ll be surprised how I can manage to tick off some of my mind-blowing bucket list activities. Great thanks to my loved ones who immensely understand what I go through. They have been giving me unwavering support since day 1 and they always have my back whenever I fall over and over. I also have a strong connection with my Physician so it’s easy to open up all my chagrins and frustrations.
Having Lupus is not the end of a meaningful existence on earth. True, it makes life challenging but it also makes it extra beautiful with stories of pain and survival, of inspirations and aspirations and of self-respect and self-worth.