Life with SLE and pregnancy – The story of Zara and her spouse

Siti Zaharah, or Zara, has been an SLE (Systemic Lupus Erythematosus) patient since the tender age of 12 in 2001. Both she and her husband, Jep were present at a Share and Care session that our Persatuan SLE Malaysia held for patients and their spouse. I was the facilitator of the small sharing group where participants share their feelings of being a SLE patient/caregiver. Zara and her husband were very friendly and they agreed to take on a short interview with me.

What were the symptoms of your SLE? How was it being diagnosed?

Z: I was healthy all the while until I unexpectedly lost around 10kg in 2 weeks. I was experiencing fatigue and recurrent fever. My mom realised that I had rashes all over my body. My parents and I went back and forth between several clinics seeking medical advice on my symptoms, and I was finally referred to a hospital specialist. I had countless blood tests taken before being admitted to the local hospital for almost half a year, where I was diagnosed with SLE. I was immediately prescribed with prednisone. I was the first case ever in my state, Melaka.  

What were your family and friends’ reaction and response after they knew that you have SLE?

Z: They were shocked and sad. I witnessed the pain they had to go through to accept it. They worried for my health conditions and my future. Nevertheless, I knew that I am in good hands as I have a super awesome family, especially my parents. They acknowledge that I am not that well but they never stopped me doing things that I want to. I have super supportive friends. They are the reason why I am who I am today.

My girlfriends since primary and secondary. They witnessed the hardship I went through. They came all the way from Oman, Singapore, Melaka and Australia ❤

What are some of the inconveniences/difficulties/pain that you suffered as a result of SLE?

Z: For the past 20 years I could not get over the soreness I experience on a daily basis. The normal joint pain comes and go; the rest is all good, I guess.

How long did you take to accept SLE? Was there a moment that made you decide that you have to accept SLE?

Z: Immediately, I suppose? Since I was a very competitive student at school, I adjusted quite well. I did have my gloomy days but it past quickly. I guess I coped well because of my support system.

My mom provided all I need, my dad cherished me, my sisters and brothers keep on telling me that I am ok. My teachers came to my house and my friends treated me normal. I had my 2nd relapse in the past. When it happened, I don’t feel sorry for myself, because I am who I am.

How long are you married now? How was the journey for pregnancy?

Z: I am married for 4 years now. I found out that I am pregnant in January 2020. I waited 4 years to be ready because I was concerned about getting pregnant with SLE. I was advised to get pregnant during the early stage of my marriage but I kept postponing. Last year, I made up my mind telling myself that I’m ready. I consulted my doctors and they were so helpful. A month after consulting them, the little bean is blessed into our life.

I try to eat more healthily, I start to eat more fruits. For now Alhamdullilah (Praise to God) everything is right on track, nothing has really changed. The only thing changing is my belly. My husband knows that he needs to feed 2 peeps and have to get ready to buy me anything that I want.

Zara and Jep’s recent visit to KL during Hari Raya

Is there anything that is quite different for a SLE patient and a normal woman who is pregnant? Any words for SLE patients who wish to get pregnant but are worried?

Z: Yes, we are different because of our auto immune conditions, we have to consult our doctors if we plan to conceive. It is important to let them know because certain medications that we are taking might be dangerous for the foetus, and pregnancy itself could be a risk for SLE flare. During the pregnancy, the monitoring of blood test result of anti-Ro and anti-La is crucial, as positive anti-Ro/anti-la will indicate a higher risk of neonatal lupus syndrome for the baby.  Precautions will have to be taken if the result is not desirable. My result is still pending but I am on hydrocloroxquine now, just to ensure that the blood flow to the little bean is sufficient.

I suppose God really understands how your body and mind works. Listen to yourself. Don’t rush things if you are not ready. I was dreadfully worried every day since I found out I am pregnant, but when the little bean starts to move actively my worries has dissipated. The most important thing to me, is that the support from my husband and my family, especially mental support.

I am now super excited looking forward to the arrival of my baby! I pray hard every day that he is going to be strong, healthy and goodness above all!

Zara’s husband, Jep is a graphic designer, and they have been married for 4 years now.

What are your thoughts when you knew that Zara has SLE?

J: When I heard that Zara has SLE, that was my first time I learnt about it. I was more curious than surprised, and could not understand what she went through before I met her.

How do you think Zara is coping, and in what areas in the normal life you think you have adapted your lifestyle so that Zara’s SLE is being considered and taken care of?

J: Actually, I did not feel that I need to adapt much as the only changes I made was towards the activities and environment that we lived in, such as we do not engage in activities where we are exposed to direct sunlight. We still go for backpacking but we avoid under being the sun for a long time. I never had any unfavourable experience.

What are your thoughts when Zara is pregnant?

J: I am very happy but I am concerned with her SLE conditions as pregnant while having SLE is risky. I need to pay more attention to Zara in all aspects of her daily life, and heed the advice from the doctors in the hospital and health clinics.

Any advice/thoughts that you would like to offer to husbands/significant others of people who has SLE? Or with SLE and want to have kids?

J: I don’t think I am the right person to advise, as for the past six months our journey was smooth. Zara only encountered mild fatigue and a week of morning sickness. We think it is normal among pregnant women. So, it is hard to answer your question since SLE symptoms are very subjective and different to each person. What I can say is just to stay calm; always think of positive things; and always understand your partner’s conditions. Sometimes it will be hard but keep fighting and face what may come together.

I am moved by how supportive Jep is to Zara, and the positive attitude that both of them took to overcome the challenges and risks that arisen because of SLE. With this I hope that SLE patients do not get overly worried about conception and whether or not SLE will be triggered with a flare because of pregnancy. No doubt that we SLE patients have to really take care of ourselves and not stress ourselves out during pregnancy, hope is not all lost.

May Zara and Jep’s pregnancy journey be smooth; both of them take care of themselves well; and their baby delivered healthily in a few months’ time!

Burnt out because of Covid-19? Don’t worry, just keep moving.

“You are lucky that you still have a job!”

“A recession is looming! Don’t you ever think of resigning. You’ll never find another job!”

I wished I could feel nothing but gratefulness that I still have a job, but lately it has became increasingly hard to feel so.

Covid-19 has created history for being the latest addition on the list of pandemics that threatened the lives and livelihood of the human race every few decades. Whilst the death toll could not compare with the 1918 Influenza, the impact was nonetheless unprecedented and devastating.

The disease has triggered a ripple effect on the world economy, and many industries are hurting badly, especially aviation, tourism, live performances, fitness, eateries, beauty parlours, construction etc. The chain does not stop there. When the employees from these industries have pay cut or outright job losses, they could not pay their rentals and daily necessities, and that is how recession rears its ugly head. Unemployment rate has surged during this Covid-19 worldwide, and having a job is definitely perceived to be fortunate. It is no wonder that people who still have jobs are working harder to prove that they are still an asset to their employers.

So yes, I still have a job, and I am also burnt out.

Workers who still have jobs are experiencing tremendous stress. The economic ecosystem has already lost its balance, with a few players at the verge of dropping out of the system, and yet the existing surviving industries are still expected to perform with little interference. I work in the finance industry, and it appears that the stock exchange worldwide believes that no disruption could befall the stock market. The shareholders need their numbers and their predictions. The timelines must be met. There are many people involved in the preparation of those numbers, and with disruption in supply chain and customers’ payment, getting things moving has been harder than before.

My colleagues told me that they are experiencing precisely the same. Now we are working 10 hours workdays, and many are working through weekends. With the calls and various decisions-making cropping up (for eg. due to government announcement), work has not been efficient as pre-Covid19. The only known way to catch-up is to work more hours. Working more hours leads to mental and physical fatigue, and that exacerbated the inefficiencies. That is how the vicious cycle kept perpetuating itself.

I think we have to stop feeling guilty about not working the extra hours, if we could not. Here are some of the things that I felt that could help if you are now in that rut:

1. List down all of the things that you have to do

Having a full list helps you plan and envision the end results. I have 60 things on my list. I am not discouraged, in fact I felt that now I know “this is it”, I have clarity on whether or not I could accomplish what was on the list, and whether or not I need to speak to someone for help.

2. Achieve bite size goals everyday

Nothing is too small as an achievement. Pace yourself. Remember to strikeout items in the full list and give yourself acknowledgement at the end of each day. Remember that working home is not a walk in the park these days, simply because many other things are affecting the business that you are working in, and you are shouldering part of those burden as well.

3. Seek help and delegate

Reach out to your boss and staff to understand how is everyone coping. Chances are even your boss is feeling the heat. Discuss if you should prioritise any tasks, or if any timelines could be deferred.

4. Give yourself a break

Do things other than work. Do not lose your identity in the midst of all this chaos. If you could not finish the work anyway, what is the difference if you spent a 15 minutes doing that HIIT training or watching a video on hiking? If you continue working knowing at the back of your mind that you are forgoing the things you love, you will dread work even more.

5. Reconsider your options

At the end of the day, if your boss did not understand the difficulties that you are facing, maybe it is time to rethink if this is the place for you.

Chin up, folks.

The clock for global changes has been wound faster and like it or not we will have to learn to adapt. Maybe this means we have to pick up another skill, do a different type of work, or consider this as a crossroad, ie whether we have made the right life choices so far.  Give yourself a break. No-one could starve themselves to death in this 21st century. Hang in there. You just got to keep going. As long as you are doing something and achieving something everyday, you will get there soon.

Random thoughts on working from home and Covid-19

(With Leonard Bernstein full concert playing in the background)

It has been one month since our country was imposed with the movement restriction order. The order was to prevent the outbreak of Covid-19 and flatten the curve so that our healthcare system could cope with the number of patients. People are required to stay at home and only limited essential services, frontliners and food or grocery shopper could leave their homes.

With the constant bombardment of information and plenty of time on hand, it is almost inevitable that people are forced to face themselves and contemplate about their life one way or the other. I am grateful that I have a place to stay and a job that still maintain the pay, so I did not have to worry about my day-to-day life during the period of time. Here are some random thoughts that I have :

(1) I felt very accomplished completing house chores

I have always done my house chores religiously. But for some reasons, I felt more accomplished these days when I mopped the house, done my laundry, fold my clothes, helped with cooking, wiped down the stove etc. Maybe it is because being able to do these while working from home made me felt that I was able to live my life abit normally albeit the diminishing boundaries between work and after-work.

(2) Work from home – Yay or Nay?

I used to wish that I have a location independent work which I have the freedom to decide when I want to work, and no-one would be breathing down my neck. In my mind, free lance is the type of job that fits the bill. Now my wish has partially came true, I am starting to re-think if working from home is truly the life that I want. It is true that when you work from home, there is more flexibility. Save for conference calls, you can arrange when and how you want to do your work. Most importantly you keep your boss updated and there is results to be seen.

At the beginning of the work-from-home arrangement, there are so many conference calls that productivity is reduced significantly, especially when there are a few calls lined up. The whole day could have gone by without any actual work done. Calls can be extremely frustrating as well, with varied degrees of data connectivity issue, from both ends. There is also the part about the awkward silence when a question was asked because it is hard to call out someone when you do not see their faces.

After a while everyone just gets used to the tempo of working from home, but it does seem that it is now harder to segregate work and life. People tend to expect more from you when you are working from home.

Guess whilst having freedom to arrange work and life is important, I think a work set-up does help to segregate work and life, because no matter how much you enjoyed your work, time needs to be given to other parts of life and other people.

(3) Financial objectives – early retirement or job security?

When the stock market tanked sometime end February 2020, I started to re-think and assess which one is my priority: early retirement or job security. I have been saving up with a goal for early retirement since I stumbled upon a blog by Mr Money Moustache 4 years ago. Today I am proud to say I am on track, but just not yet. Short of 2.5 years’ savings. But now it is adequate for me to walk away and focus on doing something that makes me happy.

Of course the share market might crash yet again, with the pandemic having no signs of slowing down globally. In our country we are seeing good progress, having less cases each day, but everyone are still stuck at home, and businesses are suffering. Honestly this is the first time I felt that I cannot picture the light at the end of the tunnel. I could not phantom the world after Covid-19, when everything will be back to “how it used to be”. In fact, I am starting to think there is no such thing as “used to be”. It has already gone past the point of no return. Many things will change, and how people view jobs and life would change tremendously.

I have no qualms on the fact that I have not meet the milestone yet, financially, but I am in a good position to decide if I should take a leap of faith.

(4) People are the same, no matter where they are

This crisis has brought out the best and the worst of humanity.

When we stare at the face of a crisis, our reaction are going to be almost the same, no matter the colour of our skin, eyes and where we are. The most obvious phenomenon is panic buying. Granted there are different areas of concern for people in different location. Some might love their toilet papers more than the rest, some their furnitures, their groceries, and their masks etc.

The Aussie love their toilet papers
[Credit to Tracey Shelton/Al Jazeera]
Malaysians and their groceries.
Credit to TMR / Pic by Arif Kartono
The Singaporeans love their homeware
Credit to Twitter/infernoxv
The Filipinos queuing up for their masks.
Photo: AP

But at the same time, we see that everywhere people are donating money to help out the poor, less-privileged and homeless. Government of many countries are now providing temporary shelter to the homeless. Non-governmental organisations and volunteer charity organisations are reaching out and providing support to the frontliners and those who needed help. Humans will help out each other during these testing times.

(5) The system collapses when there is no more trust.

The first biggest mistrust that we human beings have is evident in the panic shopping. We do not believe that our fellow country men will purchase rationally and leave some food for us to purchase. So we buy in excess of what we need. We are scared to be the last person holding that last share of the company, so we panic sell. We think that everyone will take out the last cash in the bank, so we tell our friends “Cash is king”, and to take out as much cash as possible from the bank.

Why does recession happen? Give it a deeper thought and you will realise that recession happens because people believe that no-one will care about your well-being, your money, your wealth, and it was the mistrust which crushed the system, not some mystical force that sank us into darkness.

It is during these times I realised that the system is just a fallacy that everyone believes in. When people no longer embrace the system, that is when everything goes out of the window, and chaos happens.

(6) Me-time is important to me

I was grateful that I am not staying alone during these times. My family asked if I should head home before the restriction starts. But I thought that the purpose of the restriction order was not to move around and bring the virus to your loved ones, in case you are infected, plus my plants would all die if I am gone for so long. So I stayed. My boyfriend came to stay with me. We keep our work space separate, and only get together for cooking and exercise. We have our own work and hobbies, so it is crucial to be able to stay apart even if we lived under one roof.

Guess this is the part of working from home that I loved the most, having “me-time” away from human beings, but still being together with a loved one. There are moments throughout the day when I will go check the plants on the balcony, see if they needed more water, or if I need to move the seedlings in if it rains. It was a short getaway from work, I suppose. Also I get to listen to live music when I am working. My boyfriend did not necessarily love having those music played when he work, so having separate areas helped.

A saying appears more often these days: If you want to make God laugh, tell him you have a plan. This saying rings so much truth especially now. No-one can tell the future, on what will happen next week, next month, or even next year. Our movement restriction order has been extended for the third time, there are no certainties anymore on anything. All we could do is just treasure the time that we have now, and live everyday like it is the last, and pray that everything will be better tomorrow.

The storm is hitting our face now…

This is the time when people thought it could not get any worse, and it was staring at us in the face: Yes, it could get worse.

It is a testing time for not only the health of millions due to the Coronavirus, it is also a testing time for the zeros in our bank accounts. Value of shares are evaporating, cash are depleting, and jobs are hanging on threads.

Two weeks ago, we thought the worst will be over soon. The share market will go back to being bullish soon; the virus recovery rate will increase and the spread will slow down, there will be a vaccine; life goes on.

But it did not. Life went on, but things are not getting any better. It gets worse in the place where I am now. It was announced that the country will be in a lockdown due to the rapid spread of the virus, the stock exchange has been crashing like no tomorrow even before the announcement. Shares are down by 20-50%. People are getting margin calls. I am starting to see imaginary blood dripping from my mobile phone screen whenever I see a news on the recent market updates. Social media is full of news on Covid and the tumbling economy.

What can I do to reduce the stress and anxiety?

I really need to see things in a different perspective, and not get caught up with all the “what ifs” and “could have, would have”. If I rebalanced earlier on and have a whole lot of cash that I could now use to average down. If only I did not enter the local market in January using margin facility. If I could have finished all my work earlier.

What are the positive things that I can see from this?

Luckily I did not fully utilise all my margin, otherwise I would have reached my margin call last week. At least I bought some time with me deciding not to max out my margin facility. Luckily I still have some cash with me. Luckily I have finished a substantial amount of work that I am supposed to.

I have learnt many new lessons this year, especially on the stock market, and these lessons will stick with me throughout my life. I am also practising some of the lessons I learnt in the previous correction. I am doing what I need to do taking care of my personal hygiene, not attending mass gatherings, washing hands more diligently and practising social distancing by staying at home.

I will just wait out this great storm. Time is the best cure for everything. This shall pass too. Although it is quite a painful one to sit through.

Chin up everyone! We will emerge stronger. Just hang on there a bit longer!

Parasite – review and scenes explained

I heard about this movie from a few close friends but did not get around to watching it. When a friend who continuously shared posts about hating the rich said the reason was because of Parasite, I decided to watch it in the cinema.

Non-spoiler review

Parasite successfully covered many elements of humanity and it has successfully done it in a comprehensible manner. The clear theme of this drama thriller is the inequality between the rich and the poor.

Whilst the movie started as a humour-drama set-up, I was surprised by the cinematic effects that this movie was able to capture. A few of the eye-catching scenes includes:

  • Washed socks were hung on a smaller hanger, in front of a window that leveled with the road surface, enabling the family to see the back alley and thrash that is just above their flat. There is a toilet bowl just beneath the window, showing a crammed toilet space.
  • The front yard of the mansion looks beautiful, whether when there is ample sun ray or when it was raining heavily. An indication that whether the weather was good or bad, the rich gets their best view.
  • The endless fleets of aluminium pedestrian bridge staircase that the family ran to during the heavy rain was a striking scene.
  • The bird eye’s view of the flood from atop, and the scene of the refugees laying on mattresses laid in arrays on the stadium floor were eyeballs drawing. It was like the director paused the audiences from the movie and showed them pictures from a photo album.

Well unfortunately that is all I could say for a non-spoiler review. I have to refer to parts of the plot to elaborate on my thoughts on the movie.

SPOILER – DON’T PROCEED IF YOU HAVE NOT WATCHED IT

At first I thought that the “parasite” that the movie title suggested was referring to the con-men family. Later I realised that the actual parasite was the housekeeper’s husband who was stealing food and using utilities in the rich man’s mansion. The con men family was at least doing work for the family, whether or not they obtained their jobs via legitimate means. A friend said that the rich man’s family could also be seen as a form of parasite, leeching off the poor, a parasite in the society. The rich man could be selling junk to the society, and those without financial literacy bought into the promotion and advertisements and spent their money to make the rich man the big shot he was then. But could society solely blame the rich man for selling his stuff to the mass? He did not force the mass to buy them. The rich man has many faults but making himself prosperous by selling products that the mass needed was hardly one of them.

The “subway smell” has been the metaphor for poverty throughout the movie. It started when the rich man sniffed a certain insufferable smell on the dad. Then the rich man’s son also smelled the same smell on the dad, the mother and the daughter. That was when the family discussed if they should wash their clothes with different detergents. Then they realised that it was not about the detergent, rather the small basement flat that they lived in emits this stuffy smell that could not be eliminated unless they moved to another place. The rich man and his wife discussed about the dad, and concluded that he was fine, almost close to bypassing employer-employee territory, but not yet. However his “subway smell” is going to cross territory soon. The dad was hiding under the coffee table when he heard their comments, and there was slight twitch in his facial expression. The subject of the smell re-appeared for the third time when the dad was ferrying the rich man’s wife to shopping. The rich man’s wife was not as subtle as her husband. She opened the window and pinched her nose. The dad has already became sensitive over the topic of smell, and he of course notices this. The last time the smell topic surfaced was the time when the rich man lost his life. He pinched his nose and gave the dad a look when he retrieved the car keys beneath the mad man’s body. In my opinion, that pinching hardly has anything to do with the “subway stench” that the dad was so sensitive about, since the situation was so chaotic, and no-one would be able to detect a wisp of stuffy smell. However the dad took that after everything the rich man was still despising his poverty, so he plunged the knife into the rich man in a rage.

The coldest thing that I heard throughout the movie was when the rich man’s wife told the dad that “the rain last night was a good one”. The con-man’s family lost their home during the heavy rain the prior night. The dad was forced to chauffeur the lady to shopping instead of restoring his home because of the overtime fees offered by the rich man. The flood was of no concern to the rich because they are well protected from the elements. This scene could be seen as the rich’s apathy’s towards the poor’s suffering.

When the con-man’s family gotten jobs from the rich man’s family, they became smug and their attitudes towards the pissing drunk in front of their flat worsen. The son was seen bringing out his wealth rock and one could only wonder what he planned to do with the rock. Luckily the next scene only showed that he and the dad threw water at the drunk. This is an irony about people hating the rich. It is easier to hate the rich than to try to become them. They whine and complain about the rich stealing their opportunities and their lives. If you were that poor because the rich were stealing from you, shouldn’t you be busy working your ass off to not continue being poor instead of whining?

The rich man said he missed the former housekeeper’s dish, and commented that she was fine, except that she ate two people’s portion. This foreshadowed the fact that the former housekeeper was consuming on behalf of her husband living in the basement.

Another one of the biggest irony is during the scene when the son was kissing the rich man’s daughter before the garden party. The teenage girl was asking why the boyfriend was lost in thoughts when kissing her. Why, you say? Your boyfriend lost his home and there were two lurking time bombs in the basement! But then again, how would you know? Little would she know that her life was about to change dramatically.

When the mad man came to the front yard with a knife, all the guests scrambled for their lives, and the sister was stabbed with no obstruction. The rich man has been a gentleman throughout, until this very scene, when he sternly instructed the dad to hand over the car keys. It was very clear that during dire times the rich man considered his family’s life more precious than anyone else’s, including the dying art tutor’s life. He did not even helped to stop the mad man. He just ran away and only tended to his family when his daughter carried out the bleeding son on her shoulders. Could you blame him for being a coward in the presence of a maniac? Humans are selfish, and they will always care for their own family first, so I do not think this is a question of whether rich man is richer so his family’s life is worth more to save, or as a normal human being he was not heroic enough to risk his life saving people that he barely knew. Initially I wanted to come to a simple conclusion that the rich man deserved it because he treated his family and his lives above the poor family’s lives. However I asked this: who else does not? His biggest mistake is not screening through properly before bringing in this family who harbours hatred towards the rich, and he was not discreet enough to not speak nor show his disgust towards the “smell” on the dad.

The dad used to tell his son that it is fine to not have a plan because life never follows the plan. If you never had a plan in the first place then there will be no failure since there is nothing to benchmark against. He does not have a plan, however his son did harbour a plan. Ironically it was this very plan that caused the demise of the family. The dad did not have a plan, and yet in the end he murdered a person. His son had a plan and the plan destroyed the family. So what does this mean? Should there be a plan or not? Could it be just because one is poor, whether they have a plan or not their lives would be screwed? Maybe the whole family would be saved if the father had a plan instead of letting his son execute his own undisclosed plan?

The ending was the epitome of a major twist. The letter was never sent out and could never be sent out. The dad was still able to communicate via morse code, it was his family who are in grief because they could not let him know that they received his message. This brings me to the last point, which I find that both the maniac and the dad to be dregs of the society, since they hid away and avoid responsibilities when misfortune happened. They brought great pain to their families. It was also the dad’s man slaughtering of the rich man that caused the collapse of the whole family.

Overall this is a great movie, and one that gives a great deal for one to think. What do you think?

Audrey – The perseverance of a single mother with lupus

Audrey is a strong, independent and self-sacrificing single mother of two daughters who has come a very long way to where she is now. When I first heard of Audrey’s sharing, I felt that I could resonate with her on many levels. Especially on the part of her being a dedicated, hardworking and committed employee. I was very touched by her determination to persevere through all her hardships, and thankfully now everything turned out well.

About 13 years ago, Audrey’s life was saddled with marital issues and torrents of responsibilities that arisen from the conflict. Her then-husband was having an extramarital affair and she was forced to leave her house after a few years with both of her daughters. She was struggling to make ends meet, and the very thought of losing her job crippled her. She always put her two daughters, aged 6 and 3-years old as her priority, and she felt that keeping her job is the only way she could cope with the financial distress as a result of the separation.

Audrey and her beautiful babies

Audrey was incredibly versatile, making the switch from a full-time housewife back to be a qualified early childhood educator, to being a chartered secretary to cope with the rising commitments for single motherhood. She is truly one tough cookie who never bow down to fate and give up. She morphed into a stronger person and took up the challenges head on.

As a single mother, she was working long hours and had to deal with her health issues as well as raising her kids alone. She also had to oversee the construction of a house on her parent’s land after she was made to leave her matrimonial house as a result of the divorce.

These throngs of challenges and stress has exacerbated Audrey’s health problems. Serious skin rashes were her first symptom of SLE (Systemic Lupus Erythematosus). She had to face the results of the SLE diagnosis alone, and the barrage of other adversities happening at almost the same time. Health problems has come as no stranger in SLE patients’ lives, but the variety of Audrey’s health issue really shocked me, as I could not phantom how strong one’s will have to be to pull through all these physical and mental pain.

Her SLE has moved from skin involvement to chronic kidney involvement, which is also known as Lupus Nephritis Class V. She also had a myriad of other health issues, such as shingles, high fever, stage 3 hypertension, swelling in the body, excruciating joint pain, heavy menstruation (menorrhagia), hair loss, memory loss, skin thinning, frequent urination, constipation, diarrhea, dry skin, dry mouth and lips, stretch marks, moon face and dry eyes. She is a frequent visitor in hospitals and wards and had to go whenever SLE acts up. She is also on various medications in order to treat the symptoms of the attacks.

Two of the health issues brought a rude awakening to Audrey. Now when she looked back, she realised that both events could have grave consequences.

One morning in September 2014 when she was working in the office, she felt a sudden sharp tightness in her chest and she was experiencing cold sweat, difficulty in breathing and dizziness.  Amid this she fell unconscious. Miraculously after several hours she woke up and continued working. She only went to the Emergency Room the next day. She was immediately admitted to the hospital as her blood pressure was very high. Subsequently it was proven to be a heart attack and she could have just left the world if not for her will to survive. When she shared with the counselling group, everyone was shocked at how work could make her neglect her life. We could all feel her deep fear for losing her job.

Audrey being hospitalised after her heart attack

Another time she accidentally twisted her ankle and did not bandaged it nor did she take much time to follow-up with the doctor. She feared that those actions would cause her to lose her job, as she has already taken quite a lot of sick leave due to her SLE attacks. She worried that a bandage leg will further impress upon her employer that she will not be able to perform her duties and responsibilities. It did not help that the human resources department asked her to convert her medical leave to annual leave. She was under duress and tremendous pressure to not seek proper treatment on the twisted ankle. She was physically and mentally exhausted that she did not have the energy to argue with HR, and so she just did as she was told, and continued working the usual workload.

In June 2017, the Orthopedic informed her that she did not just twist her ankle, but her Achilles tendon has completely ruptured with little chances of revival. The specialist refused to operate on her because of the high tendency of SLE patients to get infections as they were on immune-depressant medications. She was referred to a physiotherapist. She was depressed as she contemplated the possibility of her being limp forever. She questioned her decision for being so self-sacrificing in order to secure her job and that she has neglected her health. She also found that the nephrologist that she was following up with was not professional and did not refer her to an orthopedic despite her updating the doctor diligently on her state of health.

Audrey’s swollen feet and ruptured ankle tendon

In the second half of 2018, after an avalanche of SLE attacks and family issues that resulted in emotional turmoil, Audrey’s two daughters pleaded that she stop trying to be strong, as they do not want to see her body to eventually succumb to SLE. They said they are now grown-up and could start working to shoulder the household’s financial commitments. Audrey considered the fact that two of her SLE acquaintances whom passed away due to complications from the attacks and decided to take her daughters’ advice by quitting her job. She spent six months resting at home and saw gradual improvement to her state of health. She has seen a reduction in joint pain and her state of mind is now more relaxed. She reflected to her earlier years when she was busy chasing her goals, such as working full-time to support her professional certifications, helping her family, supporting her marriage and children but neglected her health.

She believes that everyone should focus on their own health before sacrificing their own health and time for work or help others. Nothing is forever, especially if you are no longer alive, then nothing else matters. She considered herself fortunate as after struggling for more than 13 years, her babies had grown up to be well-behaved and academically excellent daughters. She will do her best to continue moving forward, hope for the best and take life one step at a time.

Audrey and her two beautiful daughters, grown up now after her 13 years of struggle.

Gardening taught me more than what I expect to learn

I find myself an extreme creature of randomness. Sometimes inspiration just entered my mind because of either something I read, or someone I stumbled upon, and it grew into something I never knew it would become. The biggest randomness that happened to me was stumbling upon this financial independence blogger, Mr Money Mustache’s website, and doubled my networth within three years. Not that it was that much to start with, but still, it was amazing.

Another one of these randomness was gardening. My mother, my aunts and uncles all had green finger, and loved their plants very much. Apart from the part where I asked my boyfriend to help my mom pluck weeds to prove that he could get his hands dirty, I normally shy away from the garden.

About 3-4 months ago, I read about something called Aquaponics, which means plants and fish living within the same ecosystem, with humans rearing the fishes, and the fishes in return giving their waste to the plants as their nutrients. This is an urban farming method that is gaining popularity as this reduces pesticides and toxins in fishes since their environment is largely controlled by humans. It is also encouraged by the local ministry of agriculture considering the fact that our country is having an agricultural products import deficit, meaning we mostly import our food from other countries, although we ourselves are majorly an agricultural country.

I eat broccoli and some other vegetables almost every day. So I figured, this does not seem to be too bad a plan. My balcony only had two decorative plants anyway. The worst is that the plant might die, and I will end up with no plant. No biggie. (I was sadder than I thought when they died, which is something that I did not know back then) I started to kind of eat vegetarian at home, so I cut out the fish part.

Too much water is worse than not enough water

This is a very painful lesson indeed. But it was not me who over-watered the plants. It was the rain. Whilst I was away on holiday, it rained heavily everyday, but I had no idea. It never dawned to me that I should ask my housemate to move the plants indoor. Then I saw despite the fact that the soil was wet, the leaves on several seedlings are turning yellow. I wonder what happened so I googled the reason why leaves turn yellow. Contrary to popular belief, there are many reasons why plants turn yellow, lack of water is not the only reason. It seems when plants are overwatered, the root starts to rot, and once that happens, there is no reversing of that effect. The only thing you could do is just watch them die. The words “fragility of life” comes into mind. Well I actually dug out two of the seedlings and moved them to drier soil. It actually worked for one of them.

Loneliness (or a bigger container) could kill a plant

My most prized broccoli plant, one that grew into the largest amongst my other seedlings which survived through my two weeks’ holidays did not survive after I transplanted it to a bigger bag. I was guessing perhaps that big bag made it felt lonely, since there was so much space, and it was far away from its friends before the transplant. Its leaves were too heavy for the stem to carry that it fell sideways. I tried to put a straw to straighten the stem. It just prolonged its inevitable death. I told myself, it’s ok, just continue buying broccoli from the supermarket.

My head is too heavy

Later I stumbled upon a more logical explanation. Unless the seedling is really matured, otherwise transplanting it to a bigger pot or place will loosen the soil, and since a bigger pot can hold more water, it is likely to dampen the roots and cause the plants’ roots to rot.

Planting is like parenting

Definitely a strange revelation considering the fact that I do not have children and am not sure if I would like to have them.

After learning that too much water can kill the plants, and the fact that plants need sunlight to thrive, I was thinking how could both be achieved, and this was what I came out with.

A transparent umbrella! Maybe there is indeed something called the best of both worlds?

My boyfriend said I protect and care for them too much. I should just let nature take their course. Look at weeds, they grow well, although no-one cared for them. It was an epiphany that parents probably felt the same way as I do. As much as I have done what I could, and the results was not as what I hoped it would be, I could not just give up on the seedlings and move on. And why, you ask me? Could this be love? Unreciprocated efforts? I still could not put a finger on this.

Parents could do anything for their children, even if it means giving up their lives. I know to many, mints are the easiest to grow. It was not as easy for me. I got a few grown mint plants and stems from mom several times, and they never lived into the wild bushes I thought it would, since everyone says that they are like weeds. I bought some fresh mints from the market and tried to plant them. Surprisingly one of the stalks actually survived and little buds of leaves started to sprout. Look how the left “parent leaf” lived on long enough so that the tiny buds could survive. Once that goal is achieved, it just dropped dead.

Well I might be romantising this mint growth progress but what I learnt from this is, never ever cut off all the leaves and expect that the stem would be able to do the work for you. That stem is just like the blood transfusion system, if there were no nutrients, there was nothing to transport, and death is just a matter of time.

Parents giving their all to their children

Shit happens.. and sometimes you just have to cut losses

Well not before you put up a lot of fight!

Gross! I know

The first thing I did was locating the culprits that gave my Spanish spinach these hideous bites. So apparently it was not just one but two, and maybe three of those caterpillars. It was a cringey experience removing these caterpillars and their droppings. There was nothing that I could do but to cut off all the leaves that the caterpillars has “graced”. In fact I have chopped off quite a fair bit. I could not stand the hideous looking chewing marks, and caterpillar poo.

That’s all I can remember. I am still learning every day. My plants are a solace to me when I come back from work. The first thing I do everyday the moment I stepped into the house, was to take a look at how my plants are doing. Are they growing steadily? Are they dying? Did they have enough water? Did I do what was needed? How can I improve on my planting skills? I guess I will have to wait until a garden of greenery that I have always wished for will just appear one day when I am not looking and checking in.

Till then, just plant on!