Category: Lupus

SLE patient story – Kuan’s tough decision

Every time when I listen to a fellow lupus survivor describe the time when they were first diagnosed with SLE; I had to embark on an emotional roller coaster reliving their darkest moments. In some cases, going through those memories and dilemmas would kill myself a bit in the inside, but then I would tell myself that the story has a happy ending because the fellow patient is now well and alive, and we were having a chat.

Kuan’s story had the same effect on me.

When Kuan was first pregnant in August 2014, her pre-natal check-up readings were not normal. She had low haemoglobin levels, proteinuria, and blood in her urine. Although she was worried, she was still positive about the pregnancy, because as a newlywed couple, she and her husband were excited to have a baby. The doctors have increased the frequency of her check-up to fortnightly so that any abnormities are detected at the early stage.

On Christmas eve, when Kuan went for her check-up, she had high blood pressure, and exceptionally high proteinuria and blood in urine, indicating that her kidney functions are declining rapidly. She was rushed to the hospital on an ambulance. She was overcome by fear and she cried her eyes out, not knowing what her condition was and whether her baby would be affected.

After she was hospitalised, the doctors told her that she was diagnosed with Lupus Nephritis, and that they have to carry out a renal biopsy to determine what is the extent of the damage of her kidney function. She later found out she has Rapidly Progressive Glomerulonephritis (RPGN), where her kidney glomeruli (filtering units) were damaged and were not able to filter waste and extra fluids from her blood.  When she was hospitalised, she needed dialysis to sustain her kidneys’ functions. She was also diagnosed with dilated cardiomyopathy, where her heart ventricle (muscular chamber that pumps blood out of the heart) was stretched and dilated, and could not pump blood as well as a normal heart could.   Her lungs were also affected by the SLE attack.

Kuan and her family had a decision to make.

If she continues to carry her 4 months old fetus, the doctors would not be able to perform the biopsy and administer strong dosages of Immunosuppressants to suppress her flares. The immunosuppressants are meant to weaken the overactive immune system, so when a patient takes them, the antibodies’ attack on the patient would lessen. The medication is also harmful to the fetus. If her SLE continues to attack her body organs and she is not treated, she might suffer from kidney failure – having to go through dialysis her whole life; or worse, lost her life due to heart failure, and other organs start to fail.

Kuan and her husband had never heard of SLE before, and neither side has a family history of SLE. While the SLE is tormenting her body and causing grievances to her family; they are now faced with a dilemma: should they terminate their pregnancy? Kuan’s husband, Cheng had told her throughout her pregnancy that if anything happens, her staying alive would matters the most to him. Both families agreed that the priority has to be Kuan. The answer was obvious but it ripped their hearts apart having to make the decision.

Shortly after, Kuan went through the traumatic experience of an abortion. She was given medication to dilate her cervix, and she could feel contraction pain. Her fetus was discharged the next day when she went to the toilet. It was the first and last time she saw her 4 months old baby.

There was no rest for the weary. Not long after the abortion, when her condition permitted, she had to start with the SLE treatments. She had to endure the sorrow of losing her baby and having to grasp with the reality of having to cope with lupus for life.

During those days, she had her blood taken several times a day. She was losing hair, her whole body was swollen as a result of her reduced kidney functions and a reaction to the medication. She was reluctant to look into the mirror, as she described herself looking so haggard that she felt that she is dragging Cheng down. She was also worried that the cost of SLE treatment will cause a strain to their finances.

Kuan and Cheng were married in June 2014
After Kuan was diagnosed with SLE and was treated in Jan 2015

Cheng was not one to give up easily. He visited her in the hospital daily. He would reassure her by telling her the future plans that he has charted out for her so that they could cope the SLE together. He is a man of details, he has considered all of the conditions and what he would do to address them.

As Kuan reminisced, she recalls that one of the details was the fact that due to her heart conditions, she could not carry on walking without running out of breath easily. They were staying in an apartment on the 3rd floor back then, and they must walk the stairs as the building did not have an elevator. Cheng has promised that they would move into a landed property so that she does not need to climb 3 fleets of stairs anymore. He also told her that they will get by, although they may not live a luxurious life. He will try his best to ensure that they could sustain taking into consideration the medical fees. She considers herself lucky to have his companionship, and him going out on a limb to ensure that she could focus on her treatment, and has nothing else to worry at the back of her head.

After 40 days, Kuan was discharged. However, it took approximately 1 year for her dilated heart chambers to return to the normal size. In between her heart condition has slowly improved from panting upon a few steps to being able to do yoga and almost at the end of 1 year, she started swimming. In November 2015, 1 year after, Kuan went for a trip with her family to Vietnam. When she was on the train from Hue to Danang, she was in awe with the beauty of the Lang Co beach. It brought her an epiphany that very moment: her life might be different from 1 year ago, she might have a pack of medications that other healthy people do not carry in her bag; and yet she is still able to see this picturesque scenery. She considers herself to be lucky, and there is nothing to be ungrateful for.

Kuan’s moment of epiphany when the train passed by Lang Co beach

Her SLE went into remission after 3 years. During the 3 years period, there was not one incident of relapse. Kuan has been taking her medications and seeing the doctor in accordance to the doctor’s advice. After 3 years, the doctors started to ask her the question that she was afraid of: Do you want to try to have a baby now that your SLE is in remission?

Kuan and Cheng took approximately 9 months to prepare themselves mentally so that they could attempt to have a baby again, considering the fact that the last pregnancy was a rough ride. They again made a decision to free themselves from fear and go with the flow. They gave birth to a healthy baby girl after 9 months. Their baby girl is 2 years old now. Kuan is pregnant with her second baby now, and will be due soon.

Kuan and Cheng in 2018

It is truly inspiring to see that a married couple took the “for better, for worse, in sickness and in health” marriage vow to heart, and became each other’s rock during this bumpy journey. I love Kuan’s description of their marriage: “he made me feel that I have married the right person”. For many this is something they hope they could feel until the end of days. I am grateful that Kuan allowed me to pen down her courageous battle and touching love story. I wish their family the very best and the safe delivery of their second baby!

 

This is quite a different year…

I can’t believe that we have reached the end of this shocking year with so many turn of events! Sure, Covid-19 threw us off our feet, but on a personal basis, I have never in my wildest dream imagined that I would do the things I do this year, and even now, I think I am still in recovery mode. This is the last chance for me to add one more post before the year folds.

Some of my most notable “achievements” and highlights include these:

1. Started gardening

Like so many people who contributed to the rising price of plants, I am one of them who caught the gardening flu during the Movement Control Order because of Covid-19. I have a whole blog post on this so I’ll save myself the hassle of regurgitating of how it all started. Here are some awesome pictures of my garden.

My little bromeliad corner
My little “princess corner” for the plants which couldn’t take too much sun
Another corner for those who love the sun
My significant other helping to create shade for the princess corner

2. Moved house

My moving house signifies a different stage of life and era for me. I rented a room in my friend’s house mainly because I find coping with lupus while travelling the distance (30km per way) to be quite taxing. I was very grateful that my bestie lent me a helping hand by allowing me to stay at her place. Two years went by, and many things happened to our lives. We went on to our separate ways, she moved out, and after 9 months I moved out as well. We kept in touch, but we have different priorities now. So moving out is a huge change to me. Furthermore I made a conscious decision to stay in a suburban area instead of in the city so that I could have a garden instead of staying in an apartment where I know I have to give up some of my plants. I was not ready for that.

I think this is one of the most tiring year for my other half

3. My blog gained more viewership even though I only wrote 6 posts this year

Truth to be told, this year has been a rather tough year for me, work wise. As much as I love to, I had no time, and was not in the state of mind to add more posts to the blog. In fact at some point, I felt that I was so overwhelmed that I might be mildly depressed. The strangest thing was my blog’s viewership actually increased when I was not posting any new blog posts. I suppose this has something to do with the “3-year rule”, i.e. many of your efforts will only be seen after 3 years, especially websites and blogs. I think the 3-year rule rings true for many things. Even for my plants, some took 5-6 months to blossom. If I gave up on them prematurely, I will not be able to enjoy their beauty.

In 2021 I am going back to develop my blog further, edit and weed out some of the not-so-great posts. I am going to think about content and have more interviews with lupus patients so that my readers could be inspired.

4. Quit a stressful job and moved on to a less stressful role

My job has always been a stressful one, as long as I lived. However there was something else end of last year and almost the whole of this year, which made me pull the trigger. Covid-19 was the last straw that broke the camel’s back. Due to the pandemic, my team could not work at the client’s place, the clients were not fully digitised, and therefore work was delayed and there was nothing much we could do. By the time work resumed, it was already 3 months down the road, and there was just no rest for anyone. It was really tough.

I have been contemplating about moving on to something else for quite a long time. For me, the question was always: when will I hit my magic number for early retirement?

Amidst this pandemic, I have other questions such as:

-Is not working going to make me happy?

– Why am I feeling so reluctant to work?

– Is this money going to be enough for me to indulge myself in my expensive hobbies?

– Am I shortchanging myself trying to save more to early retire?

I think I have been in withdrawal for the longest time. I always spent time tending to my garden, surfing the internet to buy more plants, doing something else instead of spending time to pen down my thoughts in my diary. I thought once I have nothing to do, I could sit down and contemplate about these questions. But it turns out that I could not actually sit down and do nothing. It is tough. Or maybe I could, but I would be surfing the internet. I do not have answers to these questions, so I carried on with the other job that does not leave me depressed and exhausted all the time.

I tried a few new things this year, namely getting writing jobs, selling plants and trying to sell some printables. I could not persist too long with my full time job. I also dislike packing up plants and earning peanuts trying to sell expensive plants to people who will not appreciate it. I might be doing it wrong but I think even if I changed my method to sell, I am not entirely sure I want to make this a career, not before I have a piece of land to place all my merchandise.

5. Did not use my passport at all this year

This goes without saying with the current pandemic situation. I think this has to be the first time in 20 years I have not used my passport at all. It is saddening, yet I now sometimes consider what would happen to my plants when I am travelling. What about my dream of living in a different country every year? Probably just have to install some irrigation system that can be controlled from abroad.

6. Only read 2 books this year

I suppose for me the most surprising turns of events was reading only 2 books and adding more than 100 plants to my garden. Maybe deep down I will always be a hoarder, be it hoarding books or plants or some other collectibles. I also have a secret dream that one day maybe I will be selling off everything and start living a minimalist lifestyle. Until then, I will recommence my reading habit soon after I tidy up my garden and made it the one I have in my head.

This is a year that gave me a lot to think, and I see many different things in new light. It maybe my quarter life or mid life crisis, there was just so many things to think about, I rather not think. Humans are complicated beings, or can things be less complicated? Am I overthinking or there are some merits to the things going through my head? This is such a quizzical year, and yet I felt that I have done quite a fair bit this year. I hope things will improve next year, and I could find some answers to all my questions!

Happy New Year to you and I wish you all the best!

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!

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.

  • Swollen feet when LN Class V was active
  • Weight gain because of medication
  • Shingles

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.

Surviving two strokes- Darleen’s story

I met Darleen during a counselling training session. It was the first session where everyone shared their lupus life stories, on how they were first diagnosed with lupus, fought hard to regain their pre-lupus life, and be able to volunteer counselling help to new patients. Darleen is witty, direct and straight to the point. She is a strong and courageous woman, despite her petite size and demure appearance.

In 2000, Darleen had very high fever, swollen ankles and feet, as a result, she could not walk and she did not know why. She was taken to the hospital and was diagnosed as having Sjogren’s syndrome. Back then, it was all new to the doctor. They only gave her medication to relieve the pain she was suffering. Sjogren’s syndrome, like SLE, is an autoimmune disease. This means that your immune system attacks parts of your own body by mistake. In Sjogren’s syndrome, it attacks the joints, and glands that make tears and saliva. This caused her a dry mouth and dry eyes.

In 2008, one year after Darleen was married, she had a miscarriage. Since she had difficulty conceiving, and both she and her husband wanted kids, they went for a medical check-up. She was diagnosed with Anemia and Thalassemia too. This diagnosis and miscarriage brought much stress to her and resulted in SLE attacking her body again. In Darleen’s case, it attacked her joints. Her joint pains were so severe that she had to use crutches.

In 2013, after she came back from a road trip with her husband, he noticed that something was unusual about Darleen’s demeanour. She was taking longer to open the house grill, and the right side of her face was already drooping. She was sent to the hospital, and her blood pressure was so high that she was immediately admitted. She was diagnosed with a massive stroke, with a huge blood blotch in her left brain. Doctor said it was a miracle that she survived. But she didn’t know then and only heard about these details six months after her stroke stabilized as her husband was concerned about her mental well-being that he did not dare tell her the truth. She was diagnosed with Systemic lupus Erythematosus (SLE), SLE is an autoimmune disease where the immune system attacked the organs of a patients’ body instead of intruders. She was then discharged within a week.

Yet within a few days after her discharge, her family realized that the position that she was sleeping was unnatural, fearing that the stroke relapsed, they took her to the hospital again. Darleen was once again, diagnosed with a second stroke, which affected her right brain. The hospital discovered that the blood thinner prescribed to her did not work, and her prescription was changed from Aspirin to a much stronger Warfarin until this very day.

The double stroke has cost Darleen a six months downtime. After the stroke, she had severe difficulty standing, walking, gripping items and there was weakness in her whole body. She had speech impairment, resulting in her words coming out in slurs. Her husband was her strongest support in her journey to recovery. And with the support from her family too, her recovery was tremendously fast. Her husband made sure that she did her daily physio and facial recovery exercises, and even requested that Darleen’s niece help out when he was not around by letting her held onto her while she walked the staircase every day. She recovered in six months’ time.

Darleen was down to 42kgs after she had the double strokes.

Darleen went back to work two weeks after she was discharged, despite the temporary damage that the stroke has brought to her, and she considered this one of the gravest mistake in her career. Soon she was making so much mistakes that her employer started saying demeaning words and giving her tasks that she could no longer accomplish. She was overwhelmed by stress, and the SLE started the attacks again. She could not concentrate, and she made even more mistakes. She had another miscarriage in 2014, and she decided to quit her job.

It was a really tough time for Darleen’s household, as her husband tried his best to make ends meet and nurse her back to health all over again as she lost all her self esteem and confidence. They were living on their savings. After another 6 months, Darleen decided to take up a customer service job but it lasted her only nine months.

In June 2015, Darleen’s husband fell sick and was hospitalized. She quitted her job and took care of him for approximately 1-2 months. Unfortunately he was diagnosed with cancer Stage IV. He went through a biopsy, chemotherapy and radiotherapy, and he did not became better. After 2 month, he passed away.

In memory of Darleen’s loving husband.

This time, Darleen’s whole world came crashing down with her husband’s untimely departure. She went into a deep depression, and did not work for two years. After some time, she figured that she could not stay in the pit forever, she started to go for camps, help with church work, doing numerous social work to keep herself busy. It was her strong will and her faith in her religion that helped her through these trying times. She owes it to her family and friends for the encouragement and ‘pushes’ she needed.
Now she is ready to help other new patients again. She believes that one should never give up, despite the punches that life throws to anyone. She has the following advice for fellow lupus patients:

  • Never give up. Fight with all that you have got
  • Remember you are in control. Not the Wolf
  • Learn to accept your condition
  • Get regular exercise and stick to it. Walking is the easiest way to start and maintain
  • Maintain a healthy diet. But don’t deprive yourself from eating your favourites
  • Limit sun exposure
  • Maintain a stress-free life. Know what stresses you up and try to stay away from it
  • Get enough rest
  • Always look your best. When you look good, you feel good.
  • Have a positive mindset
  • Prayer helps. Have faith. Visit places of worship more
  • Have fun. Go out. Keep yourself busy
Darleen now.

I have nothing but admiration for Darleen and how she handled life’s adversities. The most touching thing was that despite all life’s lemons, she still decided to lend out a helping hand to patients. This really makes one think twice when they have a complaint to make about life.

With Darleen’s positive attitude in life and high spirits, I believe that she will go a long way. I hope that her lupus will treat her well, and I wish the very best for her and lupus patients all alike!

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?

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. 🙂

Happy 3 years’ anniversary, Lupus!

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 hope I’m not pushing myself too much….

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.