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. 

http://itsan.org/

xo

Videos that helped me see the light

http://www.youtube.com/watch?v=bU2_ikRu4kA&feature=share

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

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

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...

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.

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".

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!