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.

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.

Josie’s parenting journey of a 6-year-old kid with a critical illness

(Note: The picture above is not Josie’s kid)

When I first met Josie (not her real name), it was during a lupus support group forum. The topic for the forum was about Lupus Nephritis medications. A young lady raised her hand, and spoke of her 6-year-old daughter’s conditions. The girl has been diagnosed with lupus nephritis class IV, and is currently undergoing chemotherapy. The doctor mentioned that in the past it is a fatal disease. But now generally people could live with it up to 20 – 30 years.

“Do you mean she can only live up to 30s as she’s 6 now?” She sobbed.

That was almost eight months ago. That was the first time I met Josie.

Continue reading “Josie’s parenting journey of a 6-year-old kid with a critical illness”

My lupus results have improved!

Ever since my last update, I am happy to share that my lupus readings have improved. 🙂 My Protein Creatinine Ratio has reduced from 191 to 95 now. It is an indication that there is less protein leakage in my urine, indirectly means that the lupus activity has reduced, and therefore my kidney managed to catch some breath and repair the attacks it encountered previously.

It is still not within the normal range of below 50, but it was a good improvement, at least it was not in the rise. Fingers crossed the next time I see the doctor in two months’ time it would improve further and go back to the normal range. 🙂

Have not been writing much lately because I was gobbling up books from my backlog list since many years ago. So far I have read more than 10 books this year, finishing the 12th one soon. That would be another post though, on what I have read so far. But it was nothing new because those books were either classics or books that I borrowed from friends more than a decade ago. (For eg Angels and Demons by Dan Brown) 😀