Wednesday, 7 May 2014

A Big Step Forward

Last week Amy took a big step forward...

She went back to school!!
On Monday 28th April Amy went back to school for just under an hour, this is the first time she has been well enough to go in since around October.  It was such an emotional time as she was very worried about going back in but we were both reassured as Amy's home tutor went in with her so if there were any problems or if Amy felt unwell she would be able to come straight home.  She really enjoyed being back at school and went back on Tuesday again for an hour and Wednesday for half an hour, she had to come out due to getting very itchy and uncomfortable but we are all so proud of her.

Amy just before going back to school (still unable to wear uniform).

Wednesday night we were pleasantly surprised by yet another amazing breakthrough...
Amy slept through the night!!
I can't even remember the last time that has happened, even way before her TSW.
I'd like to say it was a turning point but as yet it she hasn't slept through again but it has given us hope of things to come.

We have taken some progress photos as Amy has now reached 9 months into her withdrawal from topical steroids.  (These were taken a week before her 9 month mark).

Here is a comparison photo, the top image is of Amy's arms at the start of her withdrawal and the bottom image is her arms nearly 9 months later.

Amy's feet and ankles are still very sore but have improved so much since she started taking her vitamin D supplement.  She still has a purple look to her feet but this is mainly due to her raynauds.

The top of Amy's legs, still a bit blotchy but no longer glowing red and we have clear patches in sight.

Amy's arm, although still very dry and a bit sore in places her skin has improved so much.

So far this week Amy has had a mini flare and hasn't been feeling very well, sadly she hasn't managed any more time at school.  Though this flare is rather annoying it is no way near as severe as her previous flares.  We know that there are lots of up and downs through topical steroid withdrawal but we also know that Amy is heading in the right direction and hopefully the worst is behind her.
Amy is looking forward to going back to school for a little bit again next week if she feels up to it and although she is still very itchy and uncomfortable and very aware that she still has a long road ahead of her, she continues to be my amazing, positive, brave and beautiful young lady who I couldn't be any more proud of.

Wishing those of you who are currently going through withdrawal a speedy healing.
Wishing those of you about to start, strength to make it through the bad times.
Wishing those of you just reading, good health
And continue to wish to raise awareness so that others don't have to suffer in the same way.
xx Lena & Amy xx
I will update again soon!


  1. So glad to see Amy getting better! You look terrific, Amy, and congratulations on your first few hours back to school! Focus on the good days and hours :-)

  2. Wonderful news that she has been able to attend school. Hopefully she will be feeling better soon and spend more and more time at school. How long has Amy been steroid free now, it can't be too long now until the year anniversary? Josh is reaching his 6 month free and things are easing up a tiny amount. Take care, both of you - Louise x

  3. What a trooper! Congrats on going back to school! She's a couple months before me but we're around the same time for our withdrawal. Our feet look pretty similar. :)

    Sending you Happy Healing Thoughts