I am Ian. I am a Lupus Warrior

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.

 The causes of Lupus are unknown and it has no cure but is controllable with treatments from steroids, opiate painkillers to Chemotherapy or other immunosuppressant therapies.  I was on high dosage steroids this time to control my flares.

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.

All is well. All is well. HE is here.

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.

If I’m in flare, I normally request the nurses to wrap my legs and put me on catether. It’s uncomfortable but it’s the best way I know to manage the pain and swelling.

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.

My face after I was brought back from ICU to a normal suite.

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.

This photo was taken yesterday after a client meeting at the site. I am very blessed (with a help of a friend) I’ve found the perfect formula to manage my day to day activities. It takes patience and discipline – from the time I wake up to the time I go to bed. However, I will keep on fighting to live a normal life, to fulfill my dreams, to travel to places and hopefully to spread hope to those who are also suffering.

14 thoughts on “I am Ian. I am a Lupus Warrior

  1. I am also a lupus warrior, if I can borrow your description, but I am still in the verge of managing my depression. I have lost my hairs, I gained so much weight, I have had so many stretch marks. I feel ugly and useless most of the days. I am glad reading this story. It inspires me. Just like you I can be normal too. Give me a hug!!

    Liked by 1 person

    • Depression is difficult to overcome and we can’t do away from it permanently especially with our ups and downs.. perhaps it’s part of being a survivor. I’ve been to the same situation and soon I will share with you how I was able to cope up with it.. I wish you well. Sending you my healing hugs now, Princess.

      Like

  2. Marian, I am very inspired by your story and the way you fought and stand for your life. Despite your biggest struggles you still fight and not even loses your faith. You are a strong woman ever since I have known you and you have grown a lot not just on your career but in your character and your spirituality. I am grateful to have a friend like you. You are an inspiration to many and I have so much respect on you. God has a reason why He let you experience that kind of situation. He believes in you and through you, you can help and inspire other people with the same condition as you.

    Liked by 1 person

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