Facing this ailment bravely

My feet are still pretty bad. Most parts of my body have seen better days, but my feet are still raw looking (swelling, bleeding, oozing, peeling). My feet will take the longest to heal because that's where I applied the greatest amount of steroids. 

Some people may wonder why I would put such ghastly pictures of myself so openly. Don't I worry how others regard me? My answer is no. 

I face my physical ailment bravely because I understand that this body is a mere body that will one day perish. What matters is the inward man (spirit) that should be renewed day by day. This is written in the Bible, 2 Corinthians 4:16: 

"Even though our outward man is perishing, 

yet the inward man is being renewed day by day." 

I seek the renewal of the inward man (my spirit) and have no qualms about telling and showing people how weak my physical body is and how it has been affected by steroids.   

"As for man, his days are like grass;

As a flower of the field, so he flourishes.

For the wind passes over it, and it is gone,

And its place remembers it no more." Psalm 103: 15-16

Oh how humbling it is to know how frail and fleeting life in this body is. 

Instead of worrying and being conscious about how I look or how others regard me, I choose to dwell on the Lord and His mercies instead. 

"But the mercy of the Lord is from everlasting to everlasting

On those who fear Him,

And His righteousness to children’s children." Psalm 103: 17 

If you are struggling with how you look because of TSW or with whatever causes, I hope you too can find God real and look beyond this physical body. Face your ailments bravely!  

Celebrating little success

Friends who saw me yesterday noticed a marked improvement. In just one week, my skin tone lightened by two tones.

I am thankful for the little improvements even though I understand the healing process is like a roller coaster ride. There will be some good days (when there's no flare and skin seems more 'settled'), but there will be some (or more) bad days.

I can truly understand what is described on the website

( http://itsan.org/eczema_questions_answered.html):

"Topical steroid withdrawal is a very difficult time and it can be frustrating and depressing. Try to remember that this is a very slow process and often you’ll improve one day, only to be much worse the next. It’s very “one step forward, two steps back.” It can also be confusing because you may have a very bad day only to see substantial improvements the next. Take it one day - even one hour - at a time and remind yourself that you will heal in time and this is only temporary."

I want to celebrate every baby step towards healing and I thank God that these are always timely encouragements to me.

A Church friend sent this to me this morning. How apt.

Topical Steroid Withdrawal: How bad can it be? (Part 2)

Let me continue elaborating on the other withdrawal symptoms experienced as part of TSW:

(Source: ITSAN website http://itsan.org/eczema_questions_answered.html, in bold is quoted from the website) 

Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch.
My body is in constant pain. This raw and painful skin runs throughout the body. Remember, the skin BURNS. It is raw and painful from the burning. My skin is so sensitive that some clothes must be thrown out of the closet (they irritate my skin big time) and there are many moments even contact with any clothing hurts. Its good to be in a birthday suit in times like these.   

Eczema-like rashes spread from area of skin that was originally affected by eczema. You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin even in areas where topical steroids were never used. The skin is one organ so when one area is medicated, it can affect all of your skin.
Recently, I develop hives quite easily after scratching. Some said hives is a reaction to food allergies. I suspect I can't take strawberries and lamb. Really can't pinpoint if its food. Some said its just a mutation of the TSW beast in me. As for the cuts, I have only a few of them on my toes (thank God). My sis said these cuts can be in hundreds and hurt real badly. 

Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills.

Oh tell me about this. I can be in an enclosed room without any ventilation (no aircon and no fan) and I am shivering. It's kind of sad that I have been sleeping alone (without my kids near me) due to this very reason. Oh yes, in my family, we have a practice of co-sleeping. My kids need the aircon and I need to sleep in a really warm place if not I will be shivering and trembling as if I am in the North Pole battling - 50 Celsius temperature. My shivers come with nerve shocks with pins and needles attacking my skin. It feels horrible.  

My body fails to perspire as well. In fact I can't remember the last time I perspired profusely. Somehow the sweat glands are just not working. Seems like I am closer to healing only when my sweat glands start to work. Still a long way ahead for me.  

Exhaustion.
There are work days when I just can't wait to return home and rest. Not to the point of exhaustion, but tiredness yes. This morning, I left the house at 1030am and by 3pm, I asked Alex to drop me home as I was zonked out. This is worse than all the three pregnancies I had. Those who know me personally for the last few years would know how I was like a superwoman managing the household, looking after 3 kids, working full time, studying for Masters and still make time for hobbies like scrap booking, cooking, picking up new skills like playing the piano and swimming. With TSW, I'm flat. Incapacitated.     

Insomnia or difficulty maintaining a normal sleep schedule.
One reason to explain the tiredness is insomnia. It is just so difficult to sleep due to the itch. Every night I manage a 2hr rest (max at one go). Other moments will be broken up into short 1 hr of sleep. Sleep is very disturbed every night. There were nights I had to bathe as the itch was just too unbearable. Warm showers or baths make me comfortable. I realised the best time to sleep is 5am to 8am. Probably the natural cortisol level is highest at that time. But it doesn't help if I have to wake up early for work. 
  
Loss of appetite
Thank God I can still eat and I try to eat healthily. My appetite is still quite ok especially when I know I can safely eat them (tried and tested food that won't cause me flare). I have 100% removed all refined sugar content food from my diet as refined sugar causes inflammation. So no more desserts (especially all the chinese tong shui), cakes, carbonated drinks, ice cream etc. Not tempted and no more appetite for them.       
  
Very, very dry skin that has the look and feel of plastic.
I have never used up so much moisturiser in my life. The skin is so dry that it tears. When the skin tears, it breaks into jigsaw looking pieces (you can see the literally see the flesh) and they hurt soooo badly. Yes, the skin feels like plastic, hmm...  how do I describe it? You don't feel the natural oil and smoothness of the natural skin. It feels thick and taut...yeah, like plastic.  

Topical Steroid Withdrawal: How bad can it be? (Part 1)

I am going to frighten you a little with the next few posts. I will show you how horrid I looked (and still look at times). Seriously I was surprised by the way my body reacted to the lack of steroids. Surely far from glam. In fact I I feel more like a clam. I was shocked by how horrid the symptoms were: 

On ITSAN website, http://itsan.org/eczema_questions_answered.html, it lists down for us the common symptoms of topical steroid withdrawal. I should really be a spokesperson for TSW as I have almost all the symptoms listed. In bold is quoted from the website. 

Red burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads. 

My skin literally BURNS. In a matter of two weeks (when I was probably in my 3rd month of withdrawal), my skin flared, turned red and black. It was horrendous looking as my neck turned black and swelled. I looked like a 3rd degree burnt victim with burnt markings on my face and ears. I believe I shocked everyone (colleagues, students and church friends). Alex (hubby) was away in San Francs when I was at my worst (how glad). I told him he's spared from seeing me in that ghastly state.

Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth.

I am sure my students can verify this. I can't stop scratching even when I am in class teaching. I am so itchy and probably scratch 24/7 a day. The itch is so unbearable and nothing seems to help at night. Even the body fails to respond to the antihistamine. I used to take one antihistamine and be knocked off for the next 12 hours. Now, it can at most grant me a 3 hrs sleep. My scratching aids include my well filed nails, all sorts of combs, my mum (who has really nice sharp nails) and kids (who happily scratched my back hoping to score some brownie points I guess).  

Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off.

This is such an amazing part about TSW. I never knew I could shed sooooo much skin a day. 

New skin is formed as the previous layer is burnt off and the burnt layer will dry and shed. Most of the time, flakes are caused by scratching. It is my daily routine to sweep up the flakes. It can really be quite disgusting to see piles and piles of skin daily. But I still like to see the flakes because I believe my skin is rejuvenating. New skin is formed and that's nearer to healing. Oh yes, I believe my hair sheds with the skin too... somehow. Ok blame it all on TSW!

Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.

Oh my, this is really bad bad bad for me. My edema is sudden (fast and furious) and my feet are still super swollen today. I can barely fit into my crocs slippers and birkenstock. In fact I have been wearing these slippers everywhere I trod. Including church on Sundays. How pathetic. Indeed I bade farewell to my Chanels and Loubs (for a good few months I'm sure). I am looking to the day they can see day light again.

Oozing skin. Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried.

Need I say more, see this picture and you can imagine how bad my ooze is.

I will work on part 2 of the symptoms later in the day. How glad I am to find a little more energy to follow the kids out on a Saturday. I was home bound for the last 4 Saturdays. Poor hubby got to manage 3 super energetic kids. Plucking myself up today and hopefully I can manage...The Lord's strength is sufficient!