Wednesday, 3 July 2013

2 Months Cortisone Free

2 months Cortisone FREE!!!!

Eden's been very emotional, itchy and sore the past few days ... 

We've seen improvement (3 weeks ago she wasn't even at school due to the pain she was in) ... now she's looking a lot better and will go back to school after the holidays.

She's reached that stage where her skin gets so dry she can't straighten her arms properly because it cracks open.

AGAIN ... I must emphasize ... There's HUGE improvement!
My sister saw her for the first time in 2 months the other day and was shocked at the difference ... she said it looks as if someone poured porcelein dust over Eden because her skin is so white (on her face) ... not so much her body).

I guess ... on a scale from 0 to 100 ... Eden is probably 10 % healed.

Her legs are still red at the back and upper thighs ... in fact it runs down her calves. She's got sores (from scratching) from her hands up to her arms, the folds of her arms especially dry and painful....and the rash have slowly started spreading to her back now.

She often cracks and leaks fluid ... and it smells ... strange.

Something else that is shocking to me is how much weight Eden have lost.
She's on a gluten free diet but we have cheat days ... especially when she visits her granny :) (below is a picture of her tummy 2 months ago and what it looks like now) ... I guess she was so bloated from water retention due to the cortisone use.

Eden started a private diary (she calls it her Dream Diary) ... in it she writes all her wishes / dreams. She tells me that unfortunately she can't read any of those entries to me because then her dreams won't come true but she did tell me that it's mostly about her skin and that she wants to be normal.

It's the hardest thing to watch the self confidence in your child go from average to zero...but  I keep telling myself that this is temporary and one step at a time ... at least she's still very young and we've started this journey long before she's a teenager.... I can only imagine how difficult it must be for teenagers.

We've also moved into a new house and Eden has a bedroom with no carpets in ... so happy about that as it's less dusty that way... she sheds skin like crazy and this way we can make sure we sweep up all the dead skin in her bedroom.

So basically ... in a nutshell ... the past 2 months have been incredibly exhausting ... busy ... crazy with a roller coaster of emotions...but we are 2 months cortisone free and not looking back.

All-in-all ... we are happy despite life's challenges.

almost 2 months ago when we started our journey

1 month ago with Eden's first major flare up

Currently... Eden's skin looks a lot better already ... weight loss is shocking.

Eden's face 1 month ago with the major flare ... this BURNED!

currently.... managing a smile again


  1. Eden - you are BEAUTIFUL!!!! You have an amazing smile! Your dreams will come true! Do not worry about what people think - really soon your skin will go back to normal and hardly anyone will remember what your skin looks like now. Sorry about the skin cracking! Mine hurts really bad behind my knees - my inside of the elbows are better so they no longer crack open when I extend my arm, but walking is now painful. But this will pass and we will be feeling better very soon!!! Hang in there!!! :)

  2. Wow eden.
    Great improvements.