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.

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.

navigating through life

To those who travels, we are very used to navigating ourselves through a map, thanks to the advancement of technology and Google Map! We power up the app, turn on our GPS location setting, and slowly navigate through to reach our destination. The journey may be long and arduous but we often have milestones along the way to assure us that we are heading the right direction.

Someone had drew that map for you and told you that this is the road map that you should follow to reach your destination. You took it in without any doubts as everyone else is using the same map as reference. You study the map conscientiously and grew familiar with each of the milestone in that map. You work hard and try to hit all of them, thinking that the more you hit, the closer you are to your destination. Now imagine with me…. On the road map you had always thought yourself to be on, you could not locate yourself – you are not on the map!

 k23966158

The picture above is an example of what I get when I searched for ‘human life-stage’ on Google. It represents the model of a ‘successful life’ as defined by our society. You grow up, study hard, graduate with a degree, get a well paying job, buy a car, get married, buy a house and start a family of your own, retire, grow old, deteriorate in health and eventually die peacefully. Many of us are born into this road map. We were told and presented with this road map growing up and often benchmark ourselves using these key milestones or events in life.

More and more increasingly in the last few years, I find myself lost in this road map. While trying very hard to live each day, I wasn’t sure where life was heading for me with reference to the path laid out by this ‘successful life’ road map. Unlike most of my friends, I did not progressed onto some of the milestones or events as depicted in the ‘successful life’ model.  My life took a different turn and my life path is just different from most of the people around me. I could not locate myself on this road map. It is a feeling of lagging behind mixed with the feeling of misfit and you feel yourself floating around unsure of what is left to this ‘unconventional’ life. According to the road map above, at my current age, I should have been married with maybe a few children, own a vehicle and a house big enough for a family of 5. I should be enjoying motherhood and building a family, and to make it more Christian, building Godly family and actively serving and rising through the ranks of leadership within the local church. None of that is happening for me. Here I find myself alone at a complete different path, unmarried, not serving in the local church and struggling daily living with a chronic condition. Where do I place myself on the road map? There is no place for me there.

One day, I suddenly thought to myself. “This is ridiculous. No way have I not grown in this lifetime.” If you are talking about changes and life experiences, I think I have accumulated enough to make this life rich. However, if I benchmark myself against the ‘successful life’ road map, I am a misfit. This cannot be! The moment of epiphany came when I realized that I have been bench-marking my life on a wrong road map. This road map that everyone is using is not what I am suppose to reference as a successful life. It explains why I can’t place myself anywhere there. I have to find the real road map in which I am suppose to use. But first, I need to do some homework. I need to remember where I’d come from, where I am now and where I am supposed to head from here. I do not yet have the answer or even a glimpses of how the real road map is supposed to look like, but what is clear to me is that the ‘successful life’ road map that the society celebrates is not the road map of Life. On the contrary, the celebrated milestones on the road map distracts us from finding the real road map of Life. I am made for something more.

May I find clarity…

 

 

Experiments

Back from my 2-week vacation and what a trip it has been 🙂 Apprehensive as I set off, having reservations on whether I’ll be able to cope with the physical demands involved especially when the destination is famous for its preposterous amount of steep steps with a landscape that looks like this 😉

Oia, Santorini Island, Greece
Oia, Santorini Island, Greece

Apprehensive as I was on the physical aspect, I embarked on this trip filled with a sense of confidence and purpose. Not even sure if confidence is the right word, but I know that this will be the last trip before I return to focus my mind to go through all necessary medical procedures and treatments. I know well that this trip will be a stretch to my physical body but when I survive it, I would have arrived at a mental state where I am ready to face what is required. I was ready to pay the price for this trip.

We can never fully prepare for something until we are there to experience it for ourselves. On the first day when we arrived at Oia, Santorini, we were greeted with mean steps leading to our accommodation. If you look at the above photo, just beside the white balcony closest to us at the bottom right corner is the location of our accommodation. close to the top right hand corner of the photo is a brown coloured mini market situated at the top level of the village, the level where most activities in the village take place. The top level and everywhere you see in this photo is only accessible by foot / or hired donkeys. We were dropped by car somewhere in the mid-level at the other side of the village, lugged our luggage all the way to the top level, checked-in at the office and were led to our accommodation. Traumatized we were as we lagged behind our porter (thank God for porters) who took both our luggage, 15kg and 18kg respectively on his shoulder, breezing through the steps at the speed of wind. We struggled to keep up even though our hands were empty… yikes.. what a way to be greeted on the first day.

Horror thoughts went through my mind as I struggled through the steps. Staying at a room so far down means we have to climb up the exact same steps each time we go out and down as we return. We have 3 nights and 4 days in Santorini – it was disturbing, and worried I had become. Did I ever mention that I have difficulties even with the well designed and evenly constructed stairs back home? The entire Oia village is constructed on uneven grounds and is connected by steps of different size, height and depth. No two steps are the same. I could only trust, hope and brace myself for what I would have to face. I whispered many many prayers.

One thing I had learnt through experience this time is that we can only progress when we dare step out of our comfort zone. Never, and I say never in my day-to-day routine will I even come close to any situations where I’ll be required to climb such stairs or be subjected to activities requiring such physical demands. My current adjusted lifestyle is safe and controlled, allowing for some experimental risk but only within boundaries that are regulated by each ‘experimental outcome’. In Santorini, I rose up to the challenge, with the help of painkillers of course. I was on daily dose of 7.5mg Meloxicam. After a few times up and down those stairs, they become less intimidating as the mind and body (maybe) start to adjust to them. The walking and climbing was so intense that though I couldn’t feel any physical pain (thanks to the painkiller), I was told that I had started to walk funny. The sensation of pain kicked in on the 3rd day despite the painkiller. What could I do? It is only the beginning of my 14-day trip across Greece and Santorini is my first stop. There is no return to this…

The physical demand persisted as one would expect during a trip like this. From Santorini, we proceeded to Mykonos, Delos, Delphi, Arachova, Kalambaka, Meteora and Athens. There were lots of walking, hiking, climbing and more climbing. My day starts and ends with functional stretches and constant applications of what I’d learnt from my therapists on posture and movement through the day. I was focused and determined to make it.  It was all worth it though. At the end of each boundary pushing ‘experiment’, I was rewarded with interesting finds and breathtaking sceneries that remind me that the world is much bigger than my own.

Monasteries of Meteora
Monasteries of Meteora, Greece

I survived, or dare I say I overcame myself repeatedly during this trip. I made all the climbs and hit all the places we’d planned to visit. I’d learnt and experienced much this trip and I think I came back with slightly stronger leg mucles and a slightly more flexible hip movement. The boundary was expanded during the trip and I hope it will be the trend setter!

At the back of my mind though, how do I apply that into my current lifestyle without the painkiller? More experiments beckon 🙂

“If you want to walk on water, you gotta get out of the boat!”

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…