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.