I started this blog to document my life after I was diagnosed with Lupus Nephritis Stage IV, and hopefully could inspire new patients around the world to lead a normal life again. I recalled when I was first diagnosed, I was frantically searching information on the internet to give myself hope that I will be normal again, and what I saw was other lupus patients having worse symptoms, and the only direction that lupus could turn, is to worsen. The lupus patients in the ward next to my beds are suffering frequently, and whilst I did speak to some of them, I did not have time to digest what those conversations meant to me.
It took a while for me to accept my new friend, and the adjustments that I have to make in my life. It was also not easy to accept hospital bills raking up, and that these bills need to be paid instantaneously otherwise I would not be able to receive treatment.
Somehow, I have been quite a positive person all this while, was inspired by Meru, received good care from my Rheumy, Nephrologist, friends and family, and I managed to go into remission after one month since I started the treatment. I started my blog after one year I went into remission because I needed time to cope with lupus, and decide my future direction on my career path, life in general.
Shortly after I started the blog, I start to have doubts on whether or not the blog could do the job that was intended for. I have survivor guilt on my lupus. I started to feel that maybe I am not in the position to ‘inspire’ people who are experiencing worse symptoms, and give them hopes that they might go into remission one day, like how I managed to. Maybe I was luckier than the others? Maybe I had it easier? Maybe it is best that I shut my mouth up and continue with my normal life, and not think about how hard it is for others? I even had impostor syndrome, I wondered if I am for real, am I really ‘qualified’ to inspire others who are still suffering? Am I a dud?
Maybe I should give myself more credit for being able to go into remission? It can’t be purely because of luck I suppose? There may not be a direct reason how I managed to do this, but perhaps I need to let others know that it is possible? It is indeed possible. I have seen it happen with a few lupus nephritis patients that were once in Stage IV as well.
Maybe somewhere in the world, someone would take comfort to know that there might be a good ending somehow? I can’t say for sure that I will always be in remission, but there is also no objective reasons why I should believe otherwise. I live everyday trying my best to manage my friend and my boss, lupus, whom gives me flexibility every now and then so long as I respect it.
Sometimes I barely even realised that lupus is with me all the time, but without fail I will remember to take my Cellcept before I go to sleep and after I wake up in the morning. After it gets past 12am I will always make myself go to bed. I respect my lupus like how I respect the routines of my partner, and sought its view before I engage in any activities.
When I get stressed out and frustrated, I reminded myself that lupus may not like the way how I manage my emotions, and I have to lay low and give myself a break. I also started to consider and work on some other career path where it is less stressful and more possible to accommodate to the terms of lupus. I actually do not mind serving my lupus ‘boss’ because it taught me what the real priorities in life should be, and how I should I live my life without regrets.
Let’s pray for the best and believe that one day the worst will be over!