Thursday, March 24, 2016

Song in the night

What is your song in the night? In those darkest nights when life seems crippling and the soul longs for heaven? TSW cast me into those darkest nights, into moments of despair as I grappled with torturous physical pain. The cracked, raw and red skin with fresh open wounds.... It stung so much with every bath time and any emollient applied.  It was dreadful, so very dreadful. I felt like I had walked into the valley of the shadows of death.

In moments of such despair, God never fails to bring in a song or a word..... to comfort my soul. This is a beautiful song that speaks to my heart.... I would sing this each time I feel the waves around me... and plead that God would part the waters and calm the raging sea. The chorus never fails to reduce me to tears...

"Knowing You love me through the burden I must bear,
Hearing Your footsteps lets me know I'm in Your care....
And in the night of my life You bring the promise of day,
Here is my hand, show me the way...."

What an assurance to know that we need not walk through the valley alone. What precious knowledge to know God is there each step of the way, loving and caring for us...

Part The Waters 
When I think I'm going under, part the waters, Lord. 
When I feel the waves around me, calm the sea. 
When I cry for help, O hear me, Lord, and hold out Your hand. 
Touch my life, still the raging storm in me. 

Knowing You love me through the burden I must bear, 

Hearing Your footsteps lets me know I'm in Your care, 
And in the night of my life You bring the promise of day, 
Here is my hand, show me the way. 

Knowing You love me helps me face another day. 

Hearing Your footsteps drives the clouds and fear away; 
And in the tears of my life I see the sorrow You bore, 
Here is my pain, heal it once more. 

When I think I'm going under, part the waters, Lord. 

When I feel the waves around me, calm the sea. 
When I cry for help, O hear me, Lord, and hold out Your hand. 
Touch my life, still the raging storm in me.

Wednesday, March 23, 2016

Blog objectives

I write to educate you on Topical Steroid Withdrawal (TSW) and to share openly with you my journey as I battle to recover from my addiction to steroids. I wish upon all to be sparred from this horrifying process that I went through. I would approach anyone who crosses my path whom I suspect is addicted to steroids. I can recognise just by the look of it! The pinkish, thin and damaged skin. Unmistakable! Yes I have many times approached strangers to share about TSW. 

My purpose to blog is to empower you with this knowledge. However I am in no capacity to convince or persuade you to proceed on this route. Withdrawal is a painful and very difficult process. Some speak of estranged relationships with their spouses, family members, depression, loss of jobs, financial difficulties... Many are discouraged as healing doesn't comes as expected. I am lying if I tell you all who embarked on this journey have surmounted and conquered the monster. Many in fact have dropped out and returned to steroids.... 

The decision whether to withdraw is really personal. Be empowered with this knowledge and make an informed decision of what you want to do with your health/life. Read up and consider if withdrawal is for you. Do you see yourself using steroids for the rest of your life? If the answer is a clear no, then ask yourself if you have enough support to help you through the withdrawal. Perhaps you need a supportive caregiver to look after your basic needs as even some simple household chores can be too daunting. Perhaps you are the sole bread winner and taking time off work is not possible. Is your mind strong enough to surmount pain and are you willing to "give up" the next few years of quality life to heal? Do you believe that the short term pain will bring about long term gain? Are you able to take disappointments should you fail to heal as fast as you wished? The list of things to consider can be endless....

As for me, I chose the way of withdrawal. I chose the painful way of managing without the fast fixing effect of steroids which could cause long term damage to my health. I do not wish to prolong the continual use of this drug on me. Its a personal decision that I have taken and stuck by. This path is a lonely one as I have to fight against my loved ones and well meaning friends who disapprove of the stand against steroids. 

To me, the decision is all worth it. Having seen what steroids did to my body, I am resolved never to use it to treat skin rash/eczema on myself or my children. I have a  firm belief that given time and appropriate natural help, the skin is able to heal on its own. If only we can be a little more patient and allow time to heal.... 


Saving my son from steroid addiction

It has been a long time since I last posted here. But thought its a good time now to share with you my "no steroid" determination for my son and how glad I am to save him from the possibility of steroids addiction. 

Last June, my son had a full body rash which led to staph infection (I suspect the flare was due to examination stress). The flare was so bad that his legs became inflamed, oozing and pus filled. It was messy and surely painful. As a mum, I was brought down to my knees as I was so helpless to see how his condition recurred despite 2 rounds of antibiotics (Augmentin). The doctors did not prescribed steroids as they know my stand against steroids. At the 3rd doctor's consultation, the doctor wanted to admit my son for intravenous antibiotics as he feared the infection went septic. My son pleaded against it and was put on the 3rd round of oral antibiotics. 

This time I decided to do ALL that I could to help his condition. I removed all artificial sugar from his diet, put him on probiotics, sent him for foot massage, spent tonnes on bandages, moisturised him with whichever moisturiser he found comfortable, dressing and undressing his wounds, repeated reminders (sometimes harsh ones) on not scratching, made my own natural (and very yucky) antibiotics with manuka honey, turmeric, apple cider and force it down his throat. It was a time when I had to also put my feet down against using any steroids or immunity suppressant to "help" his skin heal. I had to disagree with my husband! I was so glad that after a few weeks of perseverance, the infection eventually left (I'm sure the antibiotics helped) and the staph infection didn't recur. The skin healed decently in a matter of days (see picture). I would like to think his healing is also supported by the basket of things I gave him. 

It has been 9 months since his last serious flare and today his skin remains the normal healthy skin and there is no evidence that the skin went through a rough patch of red, inflammation and ooze. See the picture below. 

Each time I look at his feet, I am reminded of the right decision I made for him. Mummy chose not to get him started on steroids, mummy tried her very best and withstood all external pressures to save him from red skin syndrome. Others may not understand but mummy surely knows that's the best thing she could do for him.

Dear all, the skin can surely heal. But give it time and have faith in this path you have chosen. Do not ever succumb to the use of steroids!

You can do it! 


Monday, January 11, 2016

Moving on

It is just so amazing to know that January 2016 marks my 33rd month in this journey of steroids withdrawal. Almost 3 years free of steroids!
How time flies and I am so glad I have progressed from the lowest point in my life in 2013 when I witnessed the most horrendous damage steroids did to my body.

Till today, I speak passionately against the use of topical steroids to treat eczema and this post has always been my point of reference on the damaging effects of steroids .

Allow me to wallow in sentimentality as I recall how I have progressed....

Some goodbyes are necessary:

1) Supplements
The amount of supplements that I used to consume was whopping. Currently I am good not taking any. Occasionally I might pop in some probiotics, olive extract or whatever left over supplements that have yet to expire.

2) Creams
I couldn't have survived without the use of moisturizer. Thank God for His marvelous provision of the various moisturizers that I could get my hands on.
I am so thankful that gone are the days I need to lather them on. Today, a daily night routine is simply to mix some tea tree oil with a light lotion (my preference is still QV).

3) Friends 
Not sure if this is a good problem. 
Many friends were made during the TSW period. However as we improved in our health and recovered from TSW addiction, many of us have also moved on with our own lives. Over time, we stopped keeping in touch and probably never will as the 'need' to do so has diminished and disappeared. I like to think this is a good problem. Lovely goodbyes indeed. 

Everyone I know who is on this journey has improved in his/hers quality of life. There is not one I know who won't testify that the journey is not worth the pain. 

Should you are at the crossroad, wondering whether to embark on a steroids free journey, feel drop to drop a line. 

This website should be a good place to start. 


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

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...