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?

What have you done in the last 6 years?

For some reasons, I had to reflect on what I have done in the past six years. Six years was a definitive milestone in my life. Somehow a discussion between colleagues made me decided to re-think what had I achieved in the past six years as I was starting to feel that I had not achieve much.

I made a little life chronology of my own as follows:

2013 Life milestone

2014 Took on a bigger project

2015 Same bigger project. Got Lupus in Dec 2015.

2016 Spent around 3 months to contain and get acquainted to my Lupus.

2017 Got into two very stressful projects (May and Nov), temporary change of department. Lupus relapsed in Dec 2017.

2018 Readings got back normal in April 2018. Changed back to the original dept.

2019 Lupus contained so far (up till early June 2019)

Looking at this, I think I am now more forgiving of myself.

Half of the time I was trying to manage to stay within a zone that my Lupus is comfortable with. Staying afloat was already considered the milestone that I could manage. Looking at the chronology above, it is true that a relapse happens when stress piles up. It does not happen immediately when the triggering event took place. It normally takes around 3-5 months for the floodgate to build up and then unleashed. When it relapsed, it takes 3-4 months to contain the effects of the relapse. It was a period of uncertainty, and a whole new process to accept why it happened, and then to not worry too much about it.

No doubt that at some point of time in the near future, I have to re-think about my future. For now, I think I need to give some credit to myself for staying alive. Cheers.

What about you? Do you think I should cut myself some slack?

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

Ghost was the runt.. almost forgotten and left to die..

Jon was the only Snow amongst the Starks, neglected and had to take the Black to prove his worth..

They had a bond that runs deeper than any other Stark dire wolves would ever have with their Stark masters..

And yet, here we are.

This scene now breaks my heart more than ever.

Fighting to get her old life back – Story of Azreen

Azreen is a girl who led an active and interesting lifestyle before lupus. She loved group activities. Not only she was in the marching band, she also played sports such as netball and hockey when she was in high school.

Azreen has been a lupus patient for nine years. She was first diagnosed in 2010, at a young age of 14, when she was in secondary school. She started with Dicoid lupus, ie lupus that affects the skin. Visible dark red rashes started appearing on her face and limbs. She encountered intermittent fevers and joint pain. In fact her joint pain was so severe that she could not hold a pencil and write.

As a result of the active attacks of the lupus, her white blood count reduced tremendously during the period. The prolongation of such attacks without intervention would be fatal, therefore she was given immunosuppressant shots to stop her lupus attacks and manage the damage to her organs. She got the shots monthly, for a duration of ten months. Everytime the shots took approximately ten hours to be administered. After the administration, she will need to rest for one day or so. She also relied on prednisolone to increase the white blood cell count. She had to be excused from school during those days.

She had hair loss because of the attack and weight gain arising from the prednisolone ingestion. She felt sad because at her tender teenage she saw that her peers all looked pretty with spotless skin, long hair and slender bodies, whereas her exterior was completely messed up by lupus. She felt helpless having no visibility of what will become of her in the future.

In high school, kids around her were curious about her sickness, since they could see the red lupus rashes on her body. They asked her why did this happen to her, what disease is this etc. Questions that she find it hard to even explain to herself. Lupus being a disease not known of, has symptoms that are unfathomable by healthy people. Azreen recalled that when she told her teacher that she could not do her homework as her fingers could not hold a pencil properly, the teacher told her “cubalah dulu tu!” (Why don’t you try first?) For a teenage patient, this was a cruel judgement as it implied that she did not try harder, and if she did, perhaps she could hold that pen afterall? As a lupus patient myself, I knew precisely how she felt when she said she could not hold the pen. You try with all your might, and you were absolutely helpless, yet, you will not be able to hold that pen without feeling excruciating pain. There is no way for her to explain or argue with her teacher and tell her “I have tried very hard!”

Her discoid lupus has became less active several years after she was first diagnosed. However in 2017 she had kidney involvement (Lupus Nephritis) and pneumonia as a result of a triggered lupus. She attributes this to the various pressure she faced. She went through the recovery process once again.

She admitted that there was a period of time when she was in the dumps. She felt depressed and has almost wanted to give up on herself. Her mother was having a hard time accepting that both Azreen’s dad and Azreen herself has got lupus. There were times when she cried because she felt so helpless seeing Azreen in pain. But most of the other time, Azreen’s family and her mom has been a pillar to Azreen’s recovery.

Azreen spent her time praying and listening to her favorite K-Pop band, BTS, to take her mind off worrying about her sickness. She said she owed her recovery much to her own self-reflection. She knew that she could not continue to feel so bad about herself and forsake her life all together. She is now healthy and living a normal life. Although she is still wary about going under the direct sun. She has tried it before and she ended up admitted to the hospital for 2-3 days. She said she might try another time during the day, perhaps at 6.45pm. Some compromises have to be made.

” You must always believe in yourself, and know your own limits when comes to managing lupus. Tell your friends and family what help you need from them, and what are the circumstances that might trigger the attacks, so that they could work together with you to reduce chances of relapse. ” These are the advice Azreen gave, and she told me that she looks forward to be able to doing more sports, like hiking again. I wish her the very best and look forward to see her telling me more stories about her life again. 🙂