from an unwelcomed news to an open invitation

About 10 weeks ago, through a heart-to-heart conversation with a friend, I embarked on a journey of a more intentional journalling to help revive the “deadness” in my life. 10 weeks in… it has been rewarding. God speaks as much and as often as I had allowed and made space for Him.

The conversation was initiated in response to how I felt that my body was falling apart (more seriously) since April this year. I was in pain in so many levels due to Lupus and my Stage 4 avascular necrosis (AVN) of the hip. The routine of getting up in the morning and getting myself onto my routine is a daily struggle.  My movement is restricted in all levels and sometimes, it hurts even when I am not doing anything. I wrestled and struggled to reconcile my reality with the recurring Word spoken over me repeatedly over the last 2 years, that:

“… I (the Lord) will restore to you the years that the locust hath eaten, the cankerworm, and the caterpiller, and the palmerworm, my great army which I sent among you. And ye shall eat in plenty, and be satisfied, and praise the name of the Lord your God, that hath dealt wondrously with you: and my people shall never be ashamed. And ye shall know that I am in the midst of Israel, and that I am the Lord your God, and none else: and my people shall never be ashamed.” Joel 2:25-28.

“… the Lord will restore to you all that you’ve lost, double! Just like Job” (ref Job 42:10).

I am no where near in fully understanding how His word will come to pass. I have more questions than I have answers. And just as I was beginning to muster enough faith to walk this through courageously, I received another piece of heart shattering news on 19 July 2016, from the doctor. The reading of my 24-hr urine protein over the last 6 months had suggested a disease flare up, attacking my already affected kidneys. This wasn’t what I had expected. I had been working so hard taking care of myself in the last 5 years and my condition had been improving. I had managed to cut my drug intake by half since the last flare. While I had been experiencing a decrease in energy level and an overall increase in the level of discomfort, this ‘black and white’ judgement statement was hard to swallow.

I had refused an increased dosage of prednisolone, as it was the drug that had killed both my hip joints and one shoulder joint as one of the side effects to the drug treatment. I spent the last 5 years slowly decreasing my prednisolone intake to a low maintenance dosage, finally gotten rid of my steroid face, and I reject any possibility of the same drug further damaging my affected joints and other currently unaffected joints.  I think I must have intimidated the doctor when I reacted with “With my AVN you want me to take prednisolone??!!” haha! (i was attended by a junior medical officer (who did not read my medical history!!) as my long-time Rheumatologist was on long-term leave taking care of her ill mother). Well it is not the first time I challenged the doctors who attended to me. They really should read patient’s history properly before even suggesting any treatment. In any case, (probably because I was too intimidating with my very fierce neutral face and a subconscious stare that is known to kill), they adjusted the dosage of 2 other drugs instead in hope to control the disease activity. First time in 5 years 😦

With that, I am due back for another review in 4 weeks time. If test results are still bad, I will be ordered for another round of kidney biopsy to assess the damage and then find alternative treatment. Possibly the cancer drug cyclophosphamide which was the original drug they wanted to put me on 6 years ago during the onset of my lupus nephritis. I hope not. Hoping for a good test results when I return in 4 weeks time (16 Aug 2016). Hold hope with me.

As I was sharing the current episode with another close friend, I was invited to document my current  journey, as part of the Body of Christ. The invitation was to document my prayers and reflections, in sharing, so that the community around me can follow and pray with me. The decision to say yes to this invitation to open up in vulnerability was also in response to the working of the Spirit. Suffering and pain provide a chance for others to witness the workings of God and an opportunity for community to learn to carry the burden and joy of another. While I had been very private in my journey of suffering, I thought I should respond (with risk) this time, so as to not deny the work of the Spirit and compartmentalize yet another piece of knowledge into a nice piece of intellectual knowledge.

As I risk opening up my life, I know I will be judged by men. I ask not for your sympathy but your grace and compassion. I pray that through this, the Sovereignty of God be reflected and that His name be glorified. Come what may, may my suffering finds its purpose in God.

He has me. He has my heart.

“He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.” Ecc 3:11


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