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Wednesday, April 23, 2014

On suffering

I find so much encouragement listening to this message on “Grace and Suffering”.

(if you can't open, click on the link here)

I am sure you can find and take with you some nuggets of strength and encouragement.
Sharing also the links to the two songs that the congregation sang (but not recorded in the video).

May your spirit be regenerated and renewed as you dwell in the knowledge of God…. His kindness, love and mercy poured out so abundantly through Jesus Christ …
 
“But when the kindness and the love of God our Saviour toward man appeared, not by works of righteousness which we have done, but according to His mercy He saved us, through the washing of regeneration and renewing of the Holy Spirit, whom He poured out on us abundantly through Jesus Christ our Saviour, that having been justified by His grace we should become heirs according to the hope of eternal life.” Titus 3:4-7


God hath not promised skies always blue,
Flower-strewn pathways all our lives through;
God hath not promised sun without rain,
Joy without sorrow, peace without pain.

But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
  Unfailing sympathy, undying love.

God hath not promised we shall not know
Toil and temptation, trouble and woe;
He hath not told us we shall not bear
Many a burden, many a care.

God hath not promised smooth roads and wide,
Swift, easy travel, needing no guide;
Never a mountain, rocky and steep,
Never a river, turbid and deep.


Till the Storm Passes Over


In the dark of the midnight,
Have I oft hid my face;
While the storm howls above me,
And there's no hiding place;
'Mid the crash of the thunder,
Precious Lord, hear my cry;
"Keep me safe 'til the storm passes by."

'Til the storm passes over,
'Til the thunder sounds no more;
'Til the clouds roll forever from the sky,
Hold me fast, let me stand,
In the hollow of Thy hand;
Keep me safe 'til the storm passes by.

Many times Satan whispers,
"There is no need to try;
For there's no end of sorrow,
There's no hope by and by";
But I know Thou art with me,
And tomorrow I'll rise;
Where the storms never darken the skies.

'Til the storm passes over,
'Til the thunder sounds no more;
'Til the clouds roll forever from the sky,
Hold me fast, let me stand,
In the hollow of Thy hand;
Keep me safe 'til the storm passes by.

When the long night has ended,
And the storms come no more,
Let me stand in Thy presence.
On that bright, peaceful shore.
In that land where the tempest
Never comes, Lord may I
Dwell with Thee when the storm passes by.

'Til the storm passes over,
'Til the thunder sounds no more;
'Til the clouds roll forever from the sky,
Hold me fast, let me stand,
In the hollow of Thy hand;
Keep me safe 'til the storm passes by.

Hold me fast, Let me stand,
In the hollow of Thy hand;
Keep me safe 'til the storm passes by.

'Til the storm passes by.



Sending you lots of love as you trudge through your journey of pain
xoxo



Friday, March 21, 2014

Let it flare!

You cannot believe how many times the song Frozen Let it Go, rings daily in my ears. To the point of much irritation actually. Trust me, I will never get the  CD lest this is the only song my kids remember of their childhood. But their constant singing of this song gave me the inspiration to rewrite it and portray how I feel at this juncture in my withdrawal process (with a little bit of humor I hope). I titled it "Let it flare" as it reflects my acceptance of this condition. With God's grace I am coping well. I cannot control the flares and instead of getting upset when relapses hit, I continue to live and manage... Hopefully bravely and even more significantly. Yes, let it flare!

(Tune: Frozen Let it Go)

The skin glows red on the body tonight,
not a calm speck to be seen.
A moment of isolation and it looks like I'm the wreck.
The heart grimaces with this wrenching pain inside.
Couldn't keep it in, Father knows I've tried.

Don't let them see, don't let them know,
Paint the picture you always have to be.
Conceal, don't show, don't let them know.
Well, now they know!

Let it flare, let it flare!
Can't hold it back any more.
Let it flare, let it flare!
Come be brave and face the pain.
I don't care what they're going to say.
Let the fire rage on.
The burning shouldn't bothered me any more.

Wonderful how faith in God,
makes everything seem small.
And the fears that once controlled me, can't get to me at all.
It's time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I'm free!

Let it flare, let it flare!
Though I am one in agony.
Let it flare, let it flare!
You'll never see me cry.
Here I'll stand, and here I'll say.
Let the storm rage on.

God's power flurries through the air into the ground.
My soul is spiraling in mercy and grace all around.
And one thought crystallizes like an fiery blast.
I'm never giving up; I can bear with the pain!

Let it flare, let it flare,
And I'll rise like the break of dawn.
Let it flare, let it flare,
That strength in God remains
Here I stand, in the light of day.

Let the storm rage on!
The burning never bothered me anyway...

Thursday, March 6, 2014

A pandora of wishes

This is for my little girl. A treasure trove for her to discover one day.


Each charm with its special blessing and wish for her....
1) Cross: May you see Jesus. Find Him real.
2) Bible: May you anchor your life in the teachings of God’s word. Love His word.
3) Heart and Key: May you find the man who treasures the key to your heart. Choose wisely.
4) Flowers: Take time to smell the flowers. Meditate on all things lovely.
5) Graduation cap: May you seek and pursue knowledge and wisdom. Read voraciously.
6) Crown of jewels: May you be blessed with all things precious and beautiful. You are my princess. This is your crown.
7) Pearl: May you always be classy and elegant, gracious in all your dealings.
8) Flip flop: See the world for all its worth and leave your footprints behind. Create an impact.
9) Birthday cake: Take time to remember those around you. Be a blessing.
10) Family: May you find comfort in the warmth of family. Spiritual and physical.
11) Abstract: May you remain stoic in the ebb and flow of life. Hold fast to your faith.

I love you,

M. T.


Monday, February 24, 2014

30 facts about TSW that you must know

1) Never see yourself naked in the mirror, you look better dressed.
2) Forget about the next Chanel bag, you are better off spending your money on moisturizer.
3) There is a surge in daily new vocabulary used: inflammation, chills, hives, shedding, withdrawal, addiction, stingy, oozes.
4) You acquire new vocabulary like 'edema'.
5) You are a good problem in a busy food court. People shun you and you get your seat.
6) You make new friends across the globe. People you have never met.
7) You stalk web blogs and chart progress of fellow sufferers.
8) For the first time in your life you called yourself a wreak.
9) You emit an indescribable scent. A concoction of ooze and blood.
10) You hated the aircon and wished it is never invented.
11) You have the will to eradicate sugar completely from your diet
12) You changed your wardrobe to make way for long pants and long sleeve shirts
13) Your enemy is now your dermatologist.
14) You wished you can fly to California to meet the doctor you hear so much about.
15) You are bold enough to question doctors and their prescription.
16) 'Steroid' is now a swear word.
17) You have a mini drug store at home.
18) You hunt online for the cheapest deal cos you need tones of the same thing.
19) You google every chemical term printed on emollients.
20) You wished you can go into coma.
21) You found God real and have the strength to fight the beast.
22) You hope your husband won't walk out of you and still find you attractive.
23) You know people are lying if they say you are still gorgeous.
24) Your hair is permanently up in a bun.
25) You are surely down to your bare minimal. No makeup and contact lenses.
26) You considered raw food diet.
27) Your husband reminded you that you are irritable.
28) You look enviously at ladies with good skin.
29) You have come to acceptance that you will never be able to swim in bikini.
30) You find inspiration to write down "30 facts about TSW that you must know".

Thursday, February 20, 2014

Getting out of a rebound

Some of you wrote to ask how I was coping with the Jan rebound. I am glad to share that I am improving. I can FEEL the improvements. Bath time is not as torturous and there's lesser open wounds. Skin is less reactive and does not scream for moisturizer. Inflammation has gone down with less bumps. There is no strong urge to scratch (except for the habitual part). Flakes has reduced by a tremendous amount. 

Getting out of this rebound (lasted about 6 weeks) doesn't mean my skin is looking normal and good. In fact, it continues to look plasticky, pigmented, flaky and Inflamed. There are big well defined blotchy areas. See the pictures below.


Well defined areas: Skin damaged by steroids vs normal skin. I am flaking on damaged skin.



 My hands look so blotchy. I have been wearing long sleeves in this sunny country. 

 

My flakes in the morning has reduced significantly. 
This amount is "nothing" compared to the usual amount.  

To me, the look of the skin is secondary. I am just so thankful that I can FEEL more comfortable and be less edgy. In short, I am actually feeling good from the improvement made. Thank God for every little relief!

Friday, February 7, 2014

Rebound during CNY? No kidding!

I had my rebound in January. This time, the rebound - flare was pretty aggressive. How do I even describe the extent of my flare? Felt like back to day 1 of TSW. In chills and pain with red, broken and inflamed skin on legs, arms, neck (practically the whole body). Awoken by itchiness every night. Swept piles of skin every morning and moisturized at least twice a day. The skin was red, sore, broken and painful. Every bath time was a torture as my skin stung so badly with contact of water. The pain was indescribable.

Red and inflamed 


This looks gross but this is how my feet looked like days ago

Managing TSW and rebounds can be dampening and discouraging especially when I see improvements to my skin and the very next moment, it starts to regress again. I had two months of settled skin in November and December and January welcomed me with a reminder of what I went through in August last year.

I am not out of the rebound yet. Skin continues to be inflamed, itchy, red and painful. Despite how discouraging it can be, I choose to be upbeat about it and take the rebound in stride (with struggle of course). I went against the grain and joined my family in celebrating new year (yes, in my flares, cracked and painful skin). I cooked for the family (yam "abacus") and visited relatives (I actually entertained the thought of being home bound). I even attended a gathering with my old school mates. Ladies whom I have not met in the last 21 years! Was struggling if I should attend as I was definitely not looking and feeling my best. I did anyway. Well, I am glad I didn't allow this ailment to douse the enthusiasm and joy amidst the celebratory mood. I am glad I had the will and strength to work against the flesh... 

Yam Abacus made from scratch. Thank God for the KitchenAid!

School mates whom I have not met in 21 years. My neck looks 3 tones darker. Nothing to do with the lighting. The skin is 'blackish' from inflammation. I must admit I was rather discouraged after the gathering. I was surrounded with beauties with perfect skin. Told Alex I felt I need to add 10 years to my age while my school mates can take 10 years off. It took me a while (like the night) to get over this.    

As I reflect on this recent rebound, I am choosing to be thankful for this experience. Once again I am reminded on the frailty of this human body. Pain reminds of body's mortality. TSW reminds me that I must not be earth bound. Instead I must keep my eyes on Jesus and focus on everything heavenly, things that really matter (hey, looks don't matter ok!).  

It is only when I keep my eyes on Jesus, I can find the strength to cope with discouragements. I can look beyond my ugliness and rise above all crippling thoughts and be bold to confront my condition. It is looking unto Jesus that I know I am not alone in this race of life. There is Jesus who will provide the grace and strength for me to complete this race. It is simply looking unto Jesus that I need to cope in life....

Hebrews 12: 1,2 "...let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God."

I like this poem that my Church Pastor wrote. Inspired by the above verses, it speaks of why we need not give in to despair as God would revive and make us strong.... if only we look unto Jesus... xoxo




Saturday, January 11, 2014

有一天 (One Day)


有一天你若觉的失去勇气
有一天你若真的想放弃
有一天你若感觉没人爱你
有一天好像走到谷底


那一天你要振作你的心情
那一天你要珍惜你自己
那一天不要忘记有人爱你
那一天不要轻易说放弃

这个世界真有一位上帝
他爱你 他愿意帮助你
茫茫人海 虽然寂寞
他爱能温暖一切冷漠

这个世界真有一位上帝
他的双手渴望紧紧拥抱你
漫漫长夜 陪你走过
他爱你 伴你一生之久

One Day
One day if you lose your courage
One day if you want to give up
One day if you feel unloved
One day if you are at your lowest point

That day you must brace yourself
That day you must value yourself
That day you must not forget that someone loves you
That day you must not give up

There is a true God in this world
He loves you, He’s willing to help you
You may be alone in the sea of people
His love will warm your heart

There is a true God in this world
He will embrace you with His hands
He will walk with you through the long nights
He loves you and will be with you forever

Saturday, January 4, 2014

Greater appreciation for the example of Job

The book of Job spoke deeply to my heart as I was going through Topical Steroid Withdrawal. In Job 7:3- 5, it reads, 

"And wearisome nights have been appointed to me.
When I lie down, I say, ‘When shall I arise,
And the night be ended?’
For I have had my fill of tossing till dawn.
My flesh is caked with worms and dust,
My skin is cracked and breaks out afresh."

This was exactly how I felt in those dark and lonely nights. I dreaded the night for I knew it would be another sleepless one. Sleep was at most an hour each time, and without fail I would wake with crazy itchy frenzy on raw and painful skin. I wish I didn't have to sleep and could just stay awake, yet sleep was so paramount for healing. On top of the sleeplessness, I was struggling with full body red, oozing, open wounds.... Yes, I understood what Job described as "skin is cracked and breaks out afresh". I shed copious tears. 

Yet, through it all, I am thankful for this painful experience as I could appreciate the book of Job so much more. No one had it worse than Job. His loss and suffering was immense and I believe beyond comprehension (health, family, wealth...). Yet, Job stood out as a man with great trust and faith in the Lord despite all trials and affliction. Reading about him was almost like God’s urging me to emulate him, a man of faith who rose above infirmity, blameless and upright throughout his time. I was challenged by his example and sought to emulate his responses in times of affliction. He did not curse the Lord for his sufferings. He held fast to his faith in God. 

I never questioned why I had to go through this ill bout of health. On the contrary, I see the purpose and meaning as I see the good things that came out of the ordeal. Having a deeper appreciation for the book of Job is surely one of them.    



Friday, January 3, 2014

We will heal!

I dug out a picture from my hubby's phone and want to show you how my face flared at its worst. Steroids was never used on my face and neck. But TSW spares no inch. Whole body invasion! The hope is, we can get better and we will. Just give yourself time and be patient!



However I am not healed completely. Still a long way to go. Take a look at my feet now. Still lots of shedding and flaky skin. But no edema! Rejoice!



Burdened beyond measure

What do you do when you feel burdened beyond measure? That was how I felt as I battled with severe symptoms of withdrawal. This is a poem I will love to share with you. It is beautiful written with inspiration from 2 Corinthians 1:8-11 where Apostle Paul spoke of his suffering and burden (he despaired even of life), yet his trust was in the Lord with complete assurance that God will deliver. 


"For we do not want you to be ignorant, brethren, of our trouble which came to us in Asia: that we were burdened beyond measure, above strength, so that we despaired even of life. Yes, we had the sentence of death in ourselves, that we should not trust in ourselves but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us, you also helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through many."


This is my faith in God. When life throws me off and TSW sends my life tumbling out of balance, my faith and trust in the Lord enables to cope. I hope you too can find this same faith I have to enable you to cope with life's challenges. xoxo

Milestones

I have not been updating this blog and I realised I was so busy getting my life back after the symptoms eased. I was busy helping with the kids' exams, preparing for Christmas, away on family holidays... It was a good two months of getting by my yearly routine. In fact to be able to do so is considered an achievement, given that I was so ill few months back.

Let me list down some of the milestones while I was away:
1) My edema subsided significantly. Yes, I can finally  fit into all my shoes and even bought more new ones to celebrate this!

2) I can travel! In November and December, I traveled to Hong Kong and Chiang Mai. I was apprehensive about how I would react in the cold. Surprisingly, the moderate cold (15+ C) in Hong Kong was bearable and in fact comfortable! My skin did not crack under the dryness. However I was not too optimistic about exposing my skin to severe cold wintery conditions. Hence winter holidays are out.

3) I could eat all kinds of food without fearing a reaction. I think to be able to do this is so significant. In my 4th month of withdrawal. I reacted to lamb, strawberries (they gave me hives) and I was cautious of every morsel of food I took. In Hong Kong, I found myself taking lots of seafood (prawns, shell fish, crabs...etc.). Not that I fancy seafood but my hubby loves it. I was actually fine taking it. No flares, no hives, no itch from eating! What a pleasant surprise. Take a look at some of the yummy seafood I took in Hong Kong.





4) Coffee? Wine? Sugar? That's alright too. Oh yes, I am back to my old diet- coffee and lots of it. During my flares, I cut coffee, wine and sugar completely. Coffee is dehydrating, wine causes dilation of blood vessels and sugar causes inflammation. They are not TSW friendly at all. As my symptoms eased, I went back to drinking some coffee (its my comfort drink!), took some wine and desserts during festive period. In fact, I believe I added a few kilos with the increased sugar intake. I am not suggesting that coffee, wine and sugar is good. In fact, I hope I will be more discipline to eat healthily. What I am rejoicing is I can take sugar without fearing reaction or worsening inflammation.

Gorgeous rose flavored coffee and desserts from Agnes B Cafe

5) I was well enough to invite few groups of friends and students over to my place in December. Children had fun running around, ransacking the fridge, getting busy with activities like scrap booking while mummy was busy cooking and tending to their needs. Can you imagine the mess? At one point there were 12 children running all over the house! But seriously, there is much joy in the ability to be a host. This was not possible when I was ill. In fact for few months, we could not have guests over as I couldn't stand for long due to severe edema. Below is a picture of the gathering of my 40 over students at my place in December. Trust me, it is no easy feat to have so many over at the same time (with dinner provided). Thank God for granting me good recovery with energy level to be a blessing to them!


Hang on there warriors. Yes, I know you are reading. As you look back at your journey, celebrate every little improvement and list down your milestones too!