Ai Vee’s journey with her ‘grumpy lupus’

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.

Ai Vee with rashes on her face.
When Ai Vee’s lupus was extremely active.

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.

Ai Vee looking chubbier due to the effects of steroids she had to take to manage lupus.

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.

Ai Vee’s lupus has stabilised and is currently under remission.

Being grateful to yourself

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?

What have you done in the last 6 years?

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?

Never thought I’d cry for a fictional animal, and here we are..

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.

Fighting to get her old life back – Story of Azreen

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. 🙂

Goodbye, things – Book review

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.