Living with Psoriasis...

O' Fine white dust
Where doth thou cometh from?
Each day to find you I must
The white dust from a scratching storm...

Yes.. each day living with Psoriasis means.. there's dust on the floor.

What is Psoriasis you may ask.. you can read it if you google or wiki it..
http://en.wikipedia.org/wiki/Psoriasis

In short.. it's
a. Chronic
b. Genetic
c. Incurable (for now)
d. Unsightly
e. Not Infectious
f. Irritating
g. Depressing
h. skin grows at an alarming rate of every 3days.. hence the many different red & white patches on the skin.
i. known to lead to arthritis

Need I say more...

Each day, Psoriasis patients/sufferers/victims have to deal with stares and ugly looks from passersby.
To people who know you, think they have a cure for you even before understanding what Psoriasis is...

I've been living with Psoriasis for the past 8years. I unknowingly had it for 2 years. The skin doctor I saw for my corns suspected but didn't say much or didn't perform a biopsy for the skin back then. She asked if I was stressed.. I said.. No..
Sometimes you don't know if you're stressed.
About 6 years ago I was properly diagnosed and it was only localised on my legs.
In the 2 years, stress has increased because of a job situation that I did not ask for.. it's been a major fight .. it feels like I'm losing the battle.

Each day I go through a cycle of emotional ups and downs.. starting in the morning when I find, dust on the bed, dust on the floor, sometimes blood stains on the bedsheet and skin from involuntary scratching at night.
Then to the bathroom to apply soap, you feel every bump of skin that threatens to turn into a psoriasis lesion.
Then throughout the day depending on time of day and environment, it can get itchy, and people asking questions or giving odd looks or stares.
Then in the evening, when exercising, again the stares and looks.
Then at night, during bath time, again when applying soap, you get to feel every growing bump or new bump that appears.

We have tried various types of medication, but the battle is tough.. even very expensive new medication seems to work only for a while, now it seems that the psoriasis is back with a vengeance.

The Psoriasis has now spread to my arms and my back.. and beginning to appear on my torso.

My emotional ups and downs don't go well with ppl, because I'm tired of answering, but does it put them off as well.. that I don't talk to them and they don't talk to me? Am I pushing them away from me? I feel sorry that they are at the receiving end of my emotional state..

It is emotionally draining.
It seems easy to say "Trust God" .... and I do trust Him.. but what do I do in the meantime?

The word for me for my condition is "Unexpected" .. and how to not expect when everyone around you expects things to happen... how do I see God and only God when everyone seems to be shouting different things.

I'm honestly tired.. wish I could just rest..

I pray each night.. I surrender each night.. I hope.. I pray .. I want God to be glorified and victorious. .

Until I come to a point of nothingness.. then God can be everything.. have I reached that part in my life?

*may add more to the blog later*... thank you for reading my rantings

My Testimony: The JOurney So far

Last nite.. we had our Leader's Appreciation Dinner for our Zone PJN4 and PJS2 at Kokopelli.. No pictures yet.. anyways.. they'll be on facebook soon I think.

I was asked by Pastor Chris M to share my story so far.. and here's what I wrote... (of course as I shared.. I ad-libbed).. This the main gist of it..

About this time last year during I was on crutches & you see me today still using crutches from time to time & no this is not a new incidence. It has been a continuation of the same incident from then. I have what doctor's have diagnosed as an autoimmune condition called psoriasis which can lead to arthritis. This condition is primarily triggered by the stress which I faced at work doing overseas sales along with overseas technical support.
I am thankful that I can share briefly about my journey with this condition. I stayed away from church for nearly 5 months because of arthritis in my ankles & injured knees.
My wife & parents have prayed & sought various medical treatments in the past year. It was exceptionally hard to be bedridden for 2 weeks in pain & being unable to sleep as my condition worsened. It was horrible way to celebrate my 36th birthday in bed. I stayed away from church also because my wife & were getting tired of answering the same question again & again to ppl who meant well, but didn't realise that it was emotionally draining to rehearse the same answer & to politely try to refuse to try many different types of treatment.
Today I'm able to walk thru God's grace who guided us to the right place for physiotherapy. I'm not cured as this is still an existing condition. It will probably take time. We appreciate the leadership of the church for joining us in prayer & continue to covet ur prayers for us in this trying journey.
Through this time as we prayed God revealed to us that He also wanted us to fully launch our centre for children with learning differences. We came to a decision that I would quit my job. As we shared this with Pr Chris, Caryn & Pr Margaret they affirmed us it was if a burden had been lifted from the whole situation. So as of 1st of January this year I'm now full time working at our centre called Vineyard.

2 things we learnt in this journey.
Firstly we learnt not to ask God "Why" in such situations... But to ask "How do I respond" & "What do u want me to learn & do" in these situations.
Secondly there are times where we need to let our head lead our hearts & there are also times to let our heart lead our head. Primarily is to always be open to God in both avenues.

So I give glory to God for sustaining my wife & I thru this time. I ask again to remember us in ur prayers. Thank you.

It's Been Sometime..

Yeah.. it has been sometime since I last blogged.

I got back to work on June 25th after a 2 month break. Well.. I still worked from home thanks to the boss.
Used up all my hospitalization leave.

Was in a wheelchair for quite sometime, until early September.. walked slowly.
But I did manage to go to Singapore for a conference, in August. Which was a good holiday for me + faith building.
Thanks to good friends like Shawn and Gabe who also allowed me to stay with them during that time.
Met up with family and good friends along the way.

But I have to report that the Stelara shots helped in the beginning, but I have stopped taking them, because
a. Getting a bit too expensive.. Discounted shots are RM4000/dose.. I had a total of 4 shots in a span of 6 months
b. It seems it's a life long thing

So I'm doing this the traditional way.. Pray and Stress free.

I can't say that's it's clearing up but it's spreading. Do pray for me that I will be able to handle the stress.
I am walking properly now, can't run yet. Jumping also not possible.
I am back on Dew Crew duty since the Worship God Conference in DUMC.

Trying to exercise 2-3 times a week on the bicycle and treadmill. For long distances in the mall/ park I use my crutches. If my legs are a bit tired and I need to go to the mall.. I use the wheelchair.

At the prayer conference.. this word was shared to me "UNEXPECTED"... all this while I've been expecting this and that. I need to change my mindset.. to be not stress about expecting things to happen.. but to let God work.. and continue to just be diligent in what I do.

I quit my job in December to pursue what God has called me to do.. to open up a centre of learning for Kid's with learning Differences.. yeah.. i wrote about it before.. called Vineyard..

I'm into my 3rd week running this venture with my wife and God. It's so far so good.. just I miss interacting with adults.

Nevertheless I am still thankful for the journey I've had it's taught me to hold on to God's things more preciously and to make the most out of every situation for His Glory...

Sorry for the fragmented thoughts.. this post is just to quickly update what's been happening.. I gotta get up early to meet a friend and then off to Dew Crew duty for the weekend..

Tataz for now..