for the first time in …

I struggled to complete the title with the appropriate number to be inserted indicating the time since my lupus was complicated with lupus nephritis. It must have been at least 8 years ago when I was admitted for a kidney biopsy in that pre-war (second world-war) hospital building, which returned with a 50% irreversible damaged and a 30% affected kidney cells results. Yes, you got that right, my kidneys were only 20% healthy. That explained why I look like shit and feeling as bad physically. One of the indicative marker of a damaged kidney is Proteinuria, or simply, protein in urine.  Urinary protein excretion in a normal healthy human is <150 mg/24 hour and at that time, my reading was >2000 mg/24hr. Ever since, I was treated for lupus nephritis and my urine protein is constantly being monitored – spot and 24hr. The results for my spot urine protein test was usually 2+ (on a scale of negative, 1+, 2+, 3+) and I will be very happy if the result returned a 1+ for any particular test. So yesterday, I went back for another review, blood test and all.

FOR THE FIRST TIME IN >8 YEARS, MY URINE PROTEIN SPOT TEST WAS NEGATIVE!!!

And that was my cheap-thrill, amidst all the other can-be-better test results. Platelet count is still lower than normal at 121k/microL (normal 150-450k/microL), but up from the previous reading of 89k/microL just 3 months ago. As I have been experiencing new symptoms that are pretty frequent, I am being referred (AGAIN!) to the Ear, Nose and Throat for an assessment to see if Plaquenil should be continued. Been feeling breathless and constricted in my airways with a blocked ear. Not good. That officially put me under the care of 5 specialist clinics and 1 allied health clinic across 3 hospitals in 2 countries.

So more on the urine test. I think it is a result of my change in diet. Since the very romantic valentine’s day “love note” from the doctor, I had switch to Autoimmune Paleo Diet, in hope that it will do some good to my autoimmune condition. I have nothing to lose but only potential health to gain. Been on it for over 3 months now. Nothing over spectacular, but notably, I feel the overall systemic inflammation has gone down. I feel less chronic pain and find myself less in a chronic fatigue state. Improved kidney function is something that I feel, marked by sleeping through the night without waking up to use the toilet. My entire body is less tender to touch and the surface tension on my skin is also reduced. So far no clinical test evidence to strongly support the effectiveness of the switch in diet, but the first negative urine spot test is a good start 🙂

Was reminded also by a good friend, while there is no clinical test to proof anything, I am the evidence! 🙂

Will be continuing the Paleo Journey.. understand that it takes time for the body to heal especially after a long time of autoimmune activity in the body. Wish me well everyone. I need all your support.

Strong?

I may seem strong to you
but the truth is
I don’t know how else to live

It is tiring…

Walk with Me – Vocation Revisited

Towards the end of last year, I wrote on the topic of vocation, wrestling and asking the question on how I am to be part of the Body to bring Him Glory. Remembering the recurring verses and prompting to just “walk with the Lord and watch how He does it”, I think I have a better idea of what it may mean 6 months later (albeit still struggling to walk it).

So I also mentioned in my previous posts that my Lupus is on a flare. It has been for a while now and I have started more aggressive treatments since. To cut the long story short, the disease is yet to be brought under control as my body is not responding to the multiple revisions of drug treatments over the months. The process have been devastating and my body feels every bit of it – exhaustion. So what has it got to do with my vocation?

It was during one of our weekly life group meeting sometime in January where I gave an update on the status of my flare. Upon hearing how my condition has not improved, a dear brother proposed that as a life group, we will fast lunch for a week and pray for me. The whole group supported the idea immediately. To be honest, I was caught off guard and did not know how to respond. I was extremely touched by the group’s love but part of me feels unworthy and unsettled, fearing that the group may be discouraged if nothing spectacular happens at the end of the week. As I think further to my emotions then, I realise that the feeling of fear crept in because the outcome is something I have no control in – I can’t achieve better outcome just by having more knowledge or try harder. In other words, there is nothing I can do and it is totally not me. This makes me realise how much of my confidence stems from my knowledge and ability to do things.

So my life group fasted lunch for me. For a week, each of us forwent our normal social lunch outing, fasted and prayed for me. We exchanged our insights and reflections after we prayed, amidst our hunger and struggles to abstain from food (haha!) – suffering is lighter when shared with fellow starving brothers and sisters :D. It was quite an experience for me. I got to read and hear their heart, and witness their faith, love and hope growing for me. I was touched. While I agreed with all their prayers for me, I was worried for the same reason shared earlier. I remember very distinctly that on one of the lunchtime prayer session, I prayed to God that no matter what the outcome of the week-long prayer and fasting on my condition is, may it bring Him glory. I may not know how it would work, but that God will meet each of my brothers and sisters and do His wonderful work in their respective spiritual journey. That was all I could pray because there is really nothing else I can do – desperate cry!

Two verses which I clung on tightly since more than a decade ago came back to mind as I prayed in desperation.

“1 Timothy 4:4-5 – For everything created by God is good, and nothing is to be rejected if it is received with gratitude; for it is sanctified by means of the word of God and prayer.”

More than a decade ago when battling another Lupus flare, I came across the two verses above which led me to claim to God that I am good. My circumstances and all the bad that I was going through, because they have been laid at the altar through prayers of my community, my life have been sanctified by the word of God spoken in faith and is Good. I dare called myself Good for God’s purposes.

These 2 verses came back to me as I was praying that afternoon and I cried out to God to “#MakeMeGoodAgain” (pun intended), regardless of whether I am healed.

At the end of the week, we had a life group celebratory cum break-fast dinner. As I hear the accounts of my fellow brothers and sisters on their respective encounter, wrestles and communion with God in the week of praying and fasting for me, I was very humbled and at the same time encouraged. I caught a glimpse of the Good that could come out from my life. God had worked in His marvelous ways and His name was glorified through my life story. And the best thing is… that I did not even have to do anything. All that I am to do is to live my life as I am called to be – to walk with God and watch how He does it…. and in that, learn the unforced rhythms of grace.

Isaiah 55:8-9 –
“For My thoughts are not your thoughts, Nor are your ways My ways,” declares the Lord.
“For as the heavens are higher than the earth, So are My ways higher than your ways and My thoughts than your thoughts.”

“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” – Matthew 11:28-30

 

no hero

The end of year is often a time when I pause a bit to stock-take on how the year has been and what are some learning points to mark. What came clearly through the painful process was the recognition (and acceptance) that I HAVE VERY LIMITED RESOURCES – by that I mean energy and time.

While whining over how disconnected I am from the lives of the people whom I used to be close with, I was equally discouraged at how they are also disconnected from mine. What makes it more frustrating is the fact that while the spirit or mind is willing, the state of my physical self makes all these interactions almost impossible. It may be helpful to give some context to the idea behind The Spoon Theory before I write further. The Spoon Theory is a concept written by a fellow Lupus sufferer, Christine Miserandino, where spoons are used to represent energy. A person with chronic condition would have a finite amount of spoons per day and each activity, including brushing your teeth and changing your clothes, remove some spoons until eventually there is none left. The point of it is that people with chronic condition do not have endless reserves of energy or spoons as oppose to their otherwise healthy counterpart.

For me, I find myself waking up to different number of spoons every morning. There are days I woke up feeling okay and there are days I woke up feeling even more exhausted than when I went to bed. Increasingly, I find myself waking up with lesser and lesser spoons, with someday, spoon deficit. My daily routine is simple. I struggle to wake up in the morning to get ready for work. The journey from home to work (20 mins, with approximately a 10mins walk) is considered a challenging task that will zap up a significant amount of energy from me. Often by the end of a work day, my remaining energy will be just enough for me to take a slow walk home (25mins), wash up, have dinner and rest. That is my optimized daily routine for a normal day. Anything out of this routine will require some adjustments or I will just have to suffer the consequences, which at times I make provisions for because I am human being and human being are supposed to have other people in their lives!

In the midst of feeling sorry for myself that I am all alone, isolated from the world that I used to be in, and having no energy to care about everyone and all their concerns, I do still interact with people and form meaningful relationships – either by convenience (eg. work, proximity) or by love (people who make effort to stay connected and in the know). Out of all the frustrations and disappointment, I remember going through this phase where I go through the process of “evaluate, promote, demote and eliminate” for all my friendships. I do admit that was done with a bit of self-pity and maybe bitterness. Through the process, I recognize that I have very limited energy and I can’t be holding on to the past and wished for things to stay the same (people do move on). I need to focus my limited energy to recognize and give weight to the few relationships that matters and understand where I am at this point in my life. While filled with the frustration and disappointment at how many of my relationships turned out (or not turned out), I was conscious that I should not approach this with a negative and bitter mindset. I do not want to have the defensive loser mentality where “I cut you out of my life because……” I did not want the new direction to be driven by something of the negative – reaction from hurt and self-seeking.

I briefly shared what I was going through and how I was feeling with a dear friend whom I have had the privilege of staying connected over the years. Hearing my heart, he dropped me a text early one day that reads “I feel there is a need to be more present to those who need you, and cut out all other distractions.” That just resonated so deeply with my heart! I shouted a resounding “Yes” upon reading it and my spirit was instantly lifted and realigned. Instead of focusing my mind on the relationships that is slowly fading away because of reasons we can’t avoid and causing me distress, I should be focusing my (limited) time and energy on those who are around me, those who are present to me, need me, and those who had allowed me to ‘need’ them. Once I opened my eyes, I see where I am. I see many people that have been place around me. There are needs around me and there are important roles that I play (even within my less-than-productive daily routine) – I need to be present (all the more with the little that I have to offer). I think this is Grace.

A while back, I was reminded to show love and kindness where possible and I guess that is also coming back to my mind. Instead of focusing on what I have to give up, I am to focus and be present at where my current place is. I need to SEE the people and events around me to recognize beauty – one of which its story I can be a part to tell.

Deception and liberation

This week, I’ve come to a realization that I had been living the last 11 years of my under a lie. A lie that had limited me in many aspects of my life, restricted my lifestyle and put me in a permanent state of disability (both physically and mentally). I can’t even describe how cheated I feel for being misinformed, and how I had subjected myself to that bondage for 11 years, unnecessarily. As angry as I am for being ‘lied’ to, it is nothing compared to the tremendous joy arising from the inside. It is like the whole world opened up for me with possibilities, the shadow of permanent disability was lifted from me (to some extent). I felt free..

Ok that was the Abstract (pun intended) of this entry 🙂

I went to the orthopedics for a review on my stage 4 avascular necrosis of my left hip and discussed about the plan for my second total hip replacement (THR) surgery for the left hip. Other than impressing the surgeon on my up-to-date knowledge on the technology advancement in the hip replacement surgical technique – anterior approach (haha! thanks to dear friend who gave me some pointers and checklist to ensure that the surgeon is skilled for the job), and asking him lots of question including whether he is skilled/experienced enough to do it (haha.. i think he was caught by surprise when I asked him how many of such surgeries he had performed successfully).

One of the questions I asked includes whether the current hip prostheses system has improved rotational range from the previous generation. My question gave myself away.. upon further clarification, I came to realise that I had been living under a LIE ever since my right hip was replaced 11 years ago. 11 years ago when I was planning for my THR, I was informed and bombarded with information of what NOT TO DO after surgery. That includes limited range for my new hip, such as ‘do not bring you knee higher than your hip EVER’ – that just ruled out squatting, sleeping in fetus position, siting on low chairs/stool; ‘do not rotate your legs outward’; ‘do not sit crossed legged’; ‘do not bring your legs out wider than 45 degrees from the other leg’ – no splitting, no sitting on the floor; etc etc. Else, my hip may dislocate. I had lived the last 11 years adhering closely to these guidelines, under the fear that if i don’t, my hip will dislocate. Furthermore, it is a handicap, a disability that limits my activity and causes inconveniences to the people around me. It was both my physical and emotional bondage. Not nice at all.

And so, I realised that these guidelines and precautions are applicable only during the approximate 6 months recovery time.  After the hip and muscles around it had fully recovered, the prosthetic hip can restore close to full rotation and range as that of a real hip. OH… how have i lived?! A friend described it as “being trapped in a prison cell not knowing that the door is open. I feel lied to and angry, but at the same time I was freed. Now, there is a great hope because I know the judgement of disability had been lifted. Of course as a result of 15 years of non-use (including years of non-use due to pain pre-surgery), the muscles in my body are all tight and tensed. I have a long long way to go to restore my mobility and movement range, but i know it is now possible. I look forward to the day I can bend down to pick things from the floor, squat down, sit on the floor, get up from the floor with ease and cut my own toe-nails with ease. (OMG i am crying just thinking about the possibilities…. haha). So with this, I will continue to work closely with my physiotherapist and pilates instructor to achieve my goals.

I am happy!

A note on the left hip, I am planning for my THR sometime next year. Why only next year? Because first things first. Need to get my lupus under controlled before thinking about the less non life threatening discomfort. Saw the Rheumatologist this week too… got myself booked in for an ultrasound scan and a kidney biopsy. Discussion and review on treatment options to follow…

I need courage.

Meanwhile, off to Greece for a holiday first…

11 years

Today marks the 11th anniversary since the day I was given a new lease of life. 11 years ago, I underwent a total hip replacement (THR) surgery. I remember entering the operating theater full of joy knowing that with this provision, I will be able to be mobile again. I’ll be able to move around in a painless manner for once. It was an answered prayer – a new right hip.

11 years later, I find myself facing the prospect of another THR in the near future. The steroid induced avascular necrosis (AVN) of the hip, a side effect to the treatment I underwent 13 years ago for a lupus flare in the form of ulcer pyoderma gangrenosum had progressed. The x-ray at the orthopedics 3 months ago confirmed the Stage 4 AVN. The death sentence had been pronounced and the only treatment option is THR. I knew this all along but had been in denial. For the last 3 years at least, I had been doing whatever I can in order to prolong the lifespan of my left hip with a hope of a miracle before the pain reaches a level beyond my tolerance. However, the mortal body cannot escape the reality of sin and continues to decay.

So how am I different from 11 years ago? I can definitely feel the effect of aging but that is another blog post altogether hah! 11 years later, I am still me. Still battling the same disease but with a few more organs affected this time; still popping tens of pills everyday but had learnt to organise my pills more effectively with an AM-PM pill organiser; still am tired and in pain but had learnt to pause, rest and say no to things; still sustaining a damaged hip and limping in pain (yikes! I finally admit it, but still struggle to accept it) but this time on the other side; still surrounded by loving people and still making my mother very worried. Most importantly though, I am still hopeful despite everything but this time with a slightly clearer sense of what this life is about. I have a story to tell in Him

Life is in no way a bed of roses. Jesus promised that “Here on earth you will have many trials and sorrows”, but He did not stop there. “But take heart” He continued,”… because I have overcome the world.”

“For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us. For the anxious longing of the creation waits eagerly for the revealing of the sons of God.” Rom 8:18-19

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

Okay… I will start writing…again

It was just another quarterly follow-up appointment with my consultant, but somehow I knew there is something more awaiting me. Months before this, I have noticed the unusual symptoms on my eyes. There are mornings where I had to pry open my eyelids that got gelled together by the crystallization of excessive discharge. About 2 weeks ago, the symptoms gotten worse. It was painful, red, inflamed, itchy and they hurt when I put on my lenses. I went to the GP and the preliminary diagnosis was conjunctivitis. ‘Knowing’ what it is not, I asked the GP for a referral to an ophthalmologist. Somehow that got screwed up and I am only scheduled to see one next month.

So there I was last Wednesday, at my Consultant’s room. I wanted so much to tell, wanted so much to tell someone who may understand (who other than my doctor?) about what I have experienced. Was I looking for an answer or a solution? No I wasn’t… I simply needed to share the burden, I was looking for someone to co-share the anxiety that has built up – I was desiring affirmation and companionship. Upon sharing the symptoms and her examining my eyes, she confirmed my initial diagnosis that it is not an infection. I got an immediate referral to the Ophthalmologist Clinic next door for a thorough eye examination.

Verdict:
Bad news: Uveitis, inflammation of the blood vessel and connective tissue of the eyes
Good news: no apparent damage seen at core of the eyes

So what does it all mean? Lupus is active despite me being in denial thinking it is in remission since the last flare 2 years ago affecting my kidneys. Lupus is attacking the eyes. If untreated/uncontrolled, it may lead to blindness. *Silent panic* that’s not what I want! I can’t accept that… and I refuse to.

What do I do now? I wait, I stand still and I Pray.

Father, you have brought me so far not to leave me now. While there is a gentle protest within my heart, I know you will not turn your face away from me. I am lost for words, i don’t know what to pray. The heart cries in brokenness, aware of how far i have fallen and how much i want you. You’ve told me to stand still and with that stillness in my heart, I will stand still and let you move. Thank you for the love and support you have gathered for me. With you and your people. I will STAND, in the trust and peace granted from above and within. Lord have mercy.

Amen