Ai Vee is one of the most cheerful patients that I have ever met. When we first met, she had this cheeky smile on her face that I thought she was one of the counsellors. I did not think that she was a lupus patient like me afterall.
Ai Vee was diagnosed with lupus eight years ago, where it first started with rashes on her face and limbs. She went for check-ups and she was told that these are dermatology conditions, such as psoriasis or eczema. The rashes normally come and go, not until that fateful year when she was in college. A change in environment coupled with mounting pressure during studies has caused her symptoms to exacerbate. For close to half a year, her legs were swollen, and her joint pain was so excruciating that she could not walk up the stairs, open bottles, and cope with day-to-day matters.
One day she slipped, fell down and became unconscious. It was then she was finally diagnosed with Lupus Nephritis Class III. She was bed-ridden for a few days, and had to go through intensive medication to control her active lupus. She had to defer her studies to the subsequent semester because her body just could not cope with the attack and the overwhelming pressure from her studies.
Her creatine and protein readings fluctuate since she was diagnosed, and it took two years for the readings to stabilise, ie gone back to the normal readings. Fluctuating readings meant that lupus is still actively attacking her kidneys and therefore their functionality have deteriorated. During her time in college, due to a weakened immune system since she had to take medication to suppress its attacks, she has caught on numerous diseases, such as shingles (some called it snake-skin disease), fever and flu whilst on medication. She also contracted E-Coli, bacteria in the intestines and had to go to hospital everyday to receive injections. It was painful and there were no oral medication available. Ironically, recovery was harder with the medications.
She used a cute and befitting description for her lupus: grumpy. If this is not called positivity, I don’t know what else is.
Since she was diagnosed before college, I asked her how did she manage with job hunting when she graduated. She had gone through twenty over interviews to finally land her first job. She had to inform the interviewers about her illness. Some of them had a hard time understanding how the disease attacks, and the extent of impact it would have on her on her productivity, and their decisions were therefore affected. I really admire her perseverance and maturity to handle all the rejections. As a fellow lupus patient, I know for us, it is not an option to stay strong, we just got to be strong and push on.
I have also learnt one useful thing from her. Whilst the insurance companies will not allow lupus nephritis patients to enter into a policy if they did not sign up for insurance before they had the disease, it appears that the company insurance still covers expenses incurred during follow-ups, if you are hired as a permanent employee. She has switched jobs since she got her first job, and the medical expenses are still covered.
I asked her how does she stay positive with the fact that this illness brings so much inconveniences and pain to her life. She says the mantra that kept her going on was not about family or friends but her own desire to see the future possibilities that lie ahead her. “I still want to see what other happy things will happen to me in the future and I am motivated by the wish to travel around the world.” She believes firmly that the best motivation to be positive is having a strong urge to see herself become better. I echo that, and I believe that only by putting yourself as the foremost consideration will you have all the willpower to pull yourself up.
Ai Vee’s lupus has now stabilised, and she is currently in remission. She manages her stress level from time to time, maintains a balanced diet, and do simple exercises, such as walking often. She is grateful for herself and everyone else who is supporting her throughout her journey. She is now a para-counsellor in the local lupus association and helps encourage lupus patients and family members by sharing her experience and hearing them out. I am working alongside with her the same association, and I am so glad that we could help other patients go through the acceptance and self-empowerment process. Best wishes to her.
As a volunteer and patient in my local lupus association, I have spoken frequently to patients and family members about their experiences as patients and caregiver. Last Saturday, a fellow para-counsellor raised a question that some caregivers had a bit of challenge to answer.. even I stumbled when I answered it!
The question was: What do you feel grateful about yourself?
I had a long list of people that I felt grateful towards, and I cited them out feeling thankful of all the loving people around me. However after I finished my answer, the para-counsellor said: Yes you are grateful to everyone else who lent a helping hand, but what about yourself? Is there anything to feel grateful about?
I gave it a good thought, and then I said: yes, I am grateful that I am able to live like a normal person, before I got lupus!
Then the next person was the husband of a new patient who had a hard time to think of something that he felt grateful of. At first he said that he was grateful that his wife’s condition is stable, and that there is a support group to listen out to their woes. When the para-counsellor reminded him the question was about whether he felt grateful towards himself, he paused for a while, and he asked “Being grateful means something that you are happy about right?” The husband was going through some emotions and I thought he was going to flip and say “What the heck can I be grateful about having a wife who’s got lupus?”
I actually was wondering if there is any point in pushing that question further, because I think it is very hard for new patients and their caregiver to feel grateful about anything. They need time. I still remember the time when I will cry whenever someone asks “How are you?”. Would I be able to give an answer if someone insist that I say that I am grateful with myself?
But thinking about it with hindsight now, I realised that I have so many things to be grateful with myself back then. I would not be able to see it then when I was sick. I am grateful that I worked hard and had a job that was able to finance my sickness even if my personal insurance did not cover it. I am grateful that my lupus decided that I could still do sports, once it stabilises. I am grateful that I do not have photosensitivity, at least not the type where I must wear long sleeves wherever I go. I am grateful that I myself have built good relationships around me that I get the support I need when I am ill. I take credit for these good things that happen to me.
I find this exercise to think about the good things that we take for granted in our lives and be thankful extremely important. Sometimes we get so much frustrations in life that we felt that as if nothing is working according to plan. We forgot about very important things that we are blessed with, and felt that life owed us more. It’s good to take a step back and see the forest for the trees. It probably is difficult especially if you have not done that before. It takes some practicing to start to takes thing into perspective and see what good luck you are blessed with. The para-counsellor suggested one thing that we should at least feel grateful for: that we are alive. I think that is a good starting point.
So what are you grateful with yourself?
For some reasons, I had to reflect on what I have done in the past six years. Six years was a definitive milestone in my life. Somehow a discussion between colleagues made me decided to re-think what had I achieved in the past six years as I was starting to feel that I had not achieve much.
I made a little life chronology of my own as follows:
2013 Life milestone
2014 Took on a bigger project
2015 Same bigger project. Got Lupus in Dec 2015.
2016 Spent around 3 months to contain and get acquainted to my Lupus.
2017 Got into two very stressful projects (May and Nov), temporary change of department. Lupus relapsed in Dec 2017.
2018 Readings got back normal in April 2018. Changed back to the original dept.
2019 Lupus contained so far (up till early June 2019)
Looking at this, I think I am now more forgiving of myself.
Half of the time I was trying to manage to stay within a zone that my Lupus is comfortable with. Staying afloat was already considered the milestone that I could manage. Looking at the chronology above, it is true that a relapse happens when stress piles up. It does not happen immediately when the triggering event took place. It normally takes around 3-5 months for the floodgate to build up and then unleashed. When it relapsed, it takes 3-4 months to contain the effects of the relapse. It was a period of uncertainty, and a whole new process to accept why it happened, and then to not worry too much about it.
No doubt that at some point of time in the near future, I have to re-think about my future. For now, I think I need to give some credit to myself for staying alive. Cheers.
What about you? Do you think I should cut myself some slack?
Ghost was the runt.. almost forgotten and left to die..
Jon was the only Snow amongst the Starks, neglected and had to take the Black to prove his worth..
They had a bond that runs deeper than any other Stark dire wolves would ever have with their Stark masters..
And yet, here we are.
This scene now breaks my heart more than ever.
Azreen is a girl who led an active and interesting lifestyle before lupus. She loved group activities. Not only she was in the marching band, she also played sports such as netball and hockey when she was in high school.
Azreen has been a lupus patient for nine years. She was first diagnosed in 2010, at a young age of 14, when she was in secondary school. She started with Dicoid lupus, ie lupus that affects the skin. Visible dark red rashes started appearing on her face and limbs. She encountered intermittent fevers and joint pain. In fact her joint pain was so severe that she could not hold a pencil and write.
As a result of the active attacks of the lupus, her white blood count reduced tremendously during the period. The prolongation of such attacks without intervention would be fatal, therefore she was given immunosuppressant shots to stop her lupus attacks and manage the damage to her organs. She got the shots monthly, for a duration of ten months. Everytime the shots took approximately ten hours to be administered. After the administration, she will need to rest for one day or so. She also relied on prednisolone to increase the white blood cell count. She had to be excused from school during those days.
She had hair loss because of the attack and weight gain arising from the prednisolone ingestion. She felt sad because at her tender teenage she saw that her peers all looked pretty with spotless skin, long hair and slender bodies, whereas her exterior was completely messed up by lupus. She felt helpless having no visibility of what will become of her in the future.
In high school, kids around her were curious about her sickness, since they could see the red lupus rashes on her body. They asked her why did this happen to her, what disease is this etc. Questions that she find it hard to even explain to herself. Lupus being a disease not known of, has symptoms that are unfathomable by healthy people. Azreen recalled that when she told her teacher that she could not do her homework as her fingers could not hold a pencil properly, the teacher told her “cubalah dulu tu!” (Why don’t you try first?) For a teenage patient, this was a cruel judgement as it implied that she did not try harder, and if she did, perhaps she could hold that pen afterall? As a lupus patient myself, I knew precisely how she felt when she said she could not hold the pen. You try with all your might, and you were absolutely helpless, yet, you will not be able to hold that pen without feeling excruciating pain. There is no way for her to explain or argue with her teacher and tell her “I have tried very hard!”
Her discoid lupus has became less active several years after she was first diagnosed. However in 2017 she had kidney involvement (Lupus Nephritis) and pneumonia as a result of a triggered lupus. She attributes this to the various pressure she faced. She went through the recovery process once again.
She admitted that there was a period of time when she was in the dumps. She felt depressed and has almost wanted to give up on herself. Her mother was having a hard time accepting that both Azreen’s dad and Azreen herself has got lupus. There were times when she cried because she felt so helpless seeing Azreen in pain. But most of the other time, Azreen’s family and her mom has been a pillar to Azreen’s recovery.
Azreen spent her time praying and listening to her favorite K-Pop band, BTS, to take her mind off worrying about her sickness. She said she owed her recovery much to her own self-reflection. She knew that she could not continue to feel so bad about herself and forsake her life all together. She is now healthy and living a normal life. Although she is still wary about going under the direct sun. She has tried it before and she ended up admitted to the hospital for 2-3 days. She said she might try another time during the day, perhaps at 6.45pm. Some compromises have to be made.
” You must always believe in yourself, and know your own limits when comes to managing lupus. Tell your friends and family what help you need from them, and what are the circumstances that might trigger the attacks, so that they could work together with you to reduce chances of relapse. ” These are the advice Azreen gave, and she told me that she looks forward to be able to doing more sports, like hiking again. I wish her the very best and look forward to see her telling me more stories about her life again. 🙂
Last book for 2018! I have a mixed feeling for this one. When I first read it, I felt that perhaps this is the solution to a lot of issues.
Minimalism is basically the idealism of not depending on things (either possessions or fame etc) to prove who you are. Living for the “Now”, rather than overly worrying over the future, trying to work hard for the happiness that you might feel at the end of the marathon. Focusing on experiences that produce happiness that is more long lasting than what materials can give.
The book tells you maybe you already have enough, and you don’t need to work so hard to try to earn more money to buy things that you don’t need so that you can impress people you can’t care less. (Yeah Fight club is a reference in the book)
The author only owns a futon bed, 3-4 shirts and trousers, some cookware, a small hand towel, a pair of glasses, an iPhone, a laptop and a wallet. He has disposed of all of his books, CDs, home theatre system, artsy decorations, sophisticated camera and lenses, furniture, TV and excess clothes. When he first bought these items, he did not realise that the subconscious purpose was to prove to people around him what kind of person he wants to be. He bought those books, CDs, furniture, camera, musical instruments because he wants to be seen as a person who has good sense of art, well-read, good taste in music, a movie connoisseur, a cool guy who plays the guitar etc. But as these items pile up, he realised that these items only reminded him of all the things that he wanted to be, but could not be. These material items recorded his failure. Hence he sought outlet from lazing around in his apartment, indulging in alcohol etc. He was living a fake life. He kept comparing himself with other people. He was not happy.
Thus, after he got rid of all those items, he was able to become a person who focuses on living in the present. He no longer care about how people view him. He had the time and the courage to try out things that the old him would not dare to try. He also realised that he did not need so many things, which translates to much lower living costs. He just need 200sqf of space, and approx. 100,000 yen ($912) a month to live in one of the most expensive cities on earth – Tokyo. He said that since he only needed $912 a month, and he did not care about people’s views, he could take any jobs, and need not be tied to one job that he could not afford to lose because he needed the money. That is truly an inspirational and liberating view.
As for me, I never really cared about people’s view first place, so me getting rid of stuff had a different objective than Sasaki’s. It would be more about disposing of things that I have not used for a long time, but still have some emotional attachment that caused me not being able to get rid of. The 80% of clothes in my wardrobe that I do not even wear once in the past 1 year. I would be able to benefit from the additional space once these items are being disposed of.
Although books might prove to one of the toughest items to remove, but I am already open to this thought, as I can picture several books that I do not mind to donate to a public library.
Overall a very good read, and starts you on a journey of giving the items that you have a serious thought, and stop buying too many things that not only is a hazard to yourself, and even more so for our mother earth.
Tasked as part of the writing committee for our local lupus association (Persatuan SLE Malaysia), I have no worries on the contents for our bulletin next year, because I know that in the event I could not get anyone to share their lupus experience, I will always have a trusted back-up plan: Myself!
Wow, I cannot believe that it is already 3 years since I was diagnosed.
It feels like yesterday, when I wondered why I felt this crippling pain every night, and how one week ago I was climbing walls, and one week later I had problems climbing down the staircase. I recalled the helplessness I felt when my insurance agent told me that eventhough Lupus Nephritis Class IV is part of the 36 critical illnesses, due to an untimely update, it is not covered under my personal insurance policy. I remembered that I felt like crying everytime someone asks me: “How are you?”.
Of course I also remembered the care from my parents and brother, the helping hands of my boss, the patience of my bestie, the warm wishes from my old school mates, the concern of a boy, and the encouraging words from my rheumatologist. Acceptance of the illness was not possible for me, if were not for the inspirational and life changing movie, Meru by Jimmy Chin.
It all made a difference.
My memories associated with lupus has already been stored in a corner of my mind, not something that I could recall instantly. I do not think that I consciously chosen to forget about them. Lupus has changed my life in many ways, most of them for the better.
Before I had lupus, I knew I was working very hard, and I felt like I had no choice but to work hard, just because. After I have lupus, I started to understand the meaning of the fragility of life. I understood that I am not invincible, and life does not always head towards the direction you wish that it would head to. There are always unexpected twists around the corner. If you can live your life the way you wish to live today, do not wait until tomorrow. If you can talk to your loved ones, give them a few pleasant words, a smile today, do that to them today, and do not postpone it to tomorrow. Would I still have these realisation even if I did not have lupus? I will not know the answer to that question, but I knew that I learnt a lot from lupus.
I do not like the hospital, and I dread the long hours of waiting in the hospital. But I know that I will definitely be able to see the doctor on the same day or one or two days after. I learnt to cope with it. I learnt to see the positive sides of everything. I learnt to appreciate a long wait at the specialist’s clinic. I learnt to appreciate the help that the doctors and the medical staff provide to me. I learnt to appreciate the honesty and directness in the doctor’s communication. I have gotten to know many new friends, people whom provided support, and in return, I provided support to, throughout our lupus journeys. I have started reading a lot more than before I had lupus. Mostly because during the earlier days when I was first diagnosed, I had to be in the hospital on my own, so I had more time to read.
I am now quite comfortable with lupus that sometimes I almost forgotten about it. Medication and keeping track of stress levels are things that I do on a daily basis. When my stress level elevated too much, lupus will give me a gentle tap on my wrist, instead of a violent jolt. I suppose my lupus is a mirror of myself. There is always some quid pro quo arrangement between me and lupus. I do not push it to the edge, and neither will it give a big surprise and push me to the edge. We respect each other just like that.
I had a good one this year, so I would like to toast to my lupus for 2018! Cheers!
I loved Wreck-it Ralph coz he’s the bad guy. The bad guy who doesn’t mind being bad if it is the only way he can be good. But this time, he appears to evolve into a clingy cry-baby whom shies away from adventures. He has become the boring card-punching 9-5 worker that is afraid of challenges and any disruption to his mundane and stable life. At the meantime Penelope has instead, evolved into the opposite of Ralph, cracked out of her shell and became the real bad ass she has been all this while.
I liked the movie still, love all the quirks of the internet, how they animated and humanized internet as a living organism. Would have taken a lot of technical explanation to describe how the internet works, in words. I also learnt a thing or two about how spam works, and how all that spam could translate into real money. But ultimately someone’s gotta pay. Clicks only pay as much as the real money the sites are going to get from the merchant, and the merchants won’t continue investing in this gig unless it draws real sales. But hey, not a shabby way to earn some moolah, especially if you do have good content.
Oh and the biggest thing that I could resonate with in this film, is the clever wordplay of “insecurity”. The movie has depicted insecurity correctly as a virus that multiplies itself and creates a real havoc. The monster says out the most ridiculous words, describes the most unlikely scenarios amidst of its insecurity, and somehow deep inside, it believes that there might be a hint of truth in it’s prediction. There is no way to break this virus unless the cure came from the source itself. The person must believe that their assumptions are ridiculous and not worth pursuing, and by then only is it possible for the person to be free from the virus of insecurity.
Overall it was a very enjoyable movie, and I think that sight of so many smoky Ralph would be something to remind myself when a seed of insecurity and suspicion arise again in the future.
Time flies.. and I am in the exact period when I found out that I have a lupus flare-up last year.
Life has been hectic, work has been stressful, and my eyes are getting more and more sore as a result. Sore eyes is normally a direct result of stress. This type of stress arises when I need to conduct courses. I have no issues conducting courses, but I often worry if people would learn during my sessions, and whether my sessions will achieve the intended objectives. I sworn off courses in October due to the high levels of stress caused by my own expectations. Ironically, I had to conduct another two day course again this week. I was supposed to have several colleagues assist me with the instruction of the course, since I prepare most of the materials. And yet, 2 out of the 4 instructors that promised to help did not turn up due to compelling reasons. So I had to be there both days.
After two days, I am glad it is over. I could not help but think: everyone has got their reasons why they fall apart.. What about me? It was inconsiderate for those people who just go ahead told me that they could not make it, and then did not offer to find any replacement. Just because I am still alive, does not mean I need to shoulder the world, no?
This is not the end yet. This is the nature of the job I am in. After you finished saving one fire, there are more fires waiting for you ahead. There will never be real peace of mind, until the day you quit. I have not decided to quit though. I still need the insurance for my lupus. Haha. I could pay for my medical expenses, but if someone else is paying for it, why not?
I am due for another check-up the week after next. I really need to manage my workload for the next two weeks so that my lupus do not flare-up again and cost me another one year of same heavy immunosuppressant dosage again. I am used to eating medication every day, but it would be good if I could taper down slightly.
Everyday is another day. Everyday is a day we fight for our survival. Gods be good and please do not let my good old friend flare-up again.