Tag: lupus relapse

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!

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. 🙂

My lupus comeback update: Something is better, something worse..

The good news is.. I no longer have joint pains.

The bad news is.. Lupus is still attacking my kidneys.

I was tempted to put the title as ‘It is not getting any better.’ but I know better to beat myself down at this stage. After all it is supposed to be an experiment, is it not? Since there are different outcomes for experiments, the only reasonable thing to do at this point of time is to change the way how things are done.

Continue reading “My lupus comeback update: Something is better, something worse..”

The handover procrastination syndrome and how to overcome it

The handover procrastination syndrome is a syndrome where one feels that it is impossible to handover their current tasks to the next person because of an utter sense of responsibility. You worry that you might be passing on unresolved problems, and therefore hope to minimise the hassle before handing over. Ironically this procrastination created even more stress to the person as there seems to be no escape from the piles of responsibilities that should have shifted place long ago.

Continue reading “The handover procrastination syndrome and how to overcome it”

%d bloggers like this: