Tuesday, 2 April 2013

Day 23

Joe's feeling sore and sticky but happy and positive however still a bit painful today. He's been up out of his bedroom and has visited his nan's with his sister Zoe, they went round for a beef stew. He wants everyone to know how much he loves his little sis who's nearly 12 coz of how much she helps and supports him, they are really close. They have always been close and she always knows how to cheer him up and comfort him.

So this morning Joe says he felt 'stuck to the F*in towel' which he put on his back because it seems to be constantly weeping and never seems to stop! He's still in good spirits if somewhat sarcastic about it! He had breakfast in bed porridge with a tiny bit of honey and sliced banana. He's finding it very hard to walk at the moment because of the cuts on the backs of his legs and arms, he says he feels like he's 'walking like a zombie from black op's shi nu numa' if that means anything to anyone else! Lol

He says that if it wasn't for the support of his family and music and his girlfriend he'd be really depressed and that even with the support sometimes you still wanna cry and that's fine, it's good to cry. But he says that if your doing this alone then don't despair you're not alone even if you feel it, there are thousands of people from all over the world who are going through TSW and together we can heal and change things.

He says that it's hard to go out in public because of the eczema on his face, at the moment it's all quite red and sore and his necks itchy. When he sees people staring at him it makes him want to go and hide and when people say something about it he feels angry and annoyed. It was sunny today (no chemtrails!) so this afternoon he sat in the garden enjoying the sun on his face and fresh air. He had a sleeping bag to keep him warm as well because of the cold shakes he is experiencing.

Joe also adds that today he feels mostly like a dinosaur, a T Rex because his arms are tight, weepy and cracked and so are the backs of his legs. His supper was tuna pasta with raw sweet potato, cucumber and spinach leaves, he'll have a bath before he goes to bed with the usual bit of bicarbonate of soda and lavender and tea tree oils added.

Sometimes as a mum I feel like I'm not doing enough to help Joe heal or that all I'm doing isn't helping, it's been 23 days today and I can't see much of an improvement, his skin still looks pretty painful and weepy but I'm hopeful it'll start improving soon.

4 comments:

  1. I completely empathize with not wanting to go out in public because of your face. Although mine may not be as bad at the moment, I still look like another person. Someone said "TSW will force you to give up vanity" :)

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  2. How wonderful you found ITSAN! I know Joe doesn't see it this way, but he is very fortunate to go through steroid withdrawal at age 13, and not 33 or 43, or whatever. He will live a life without the ups and downs of flares and trying all sorts of things to get rid of his "eczema". He may have a long road ahead of him right now...possibly a year or two, and I know that seems forever to a 13 year old! But he will be so happy when this is behind him for good! I am 3.5 months in to withdrawal after 30+ years of use. I will say that I still cannot go out in the sun. Dr. Rapaport says it can be harmful in the early days. And he is right...I was out for about 2 hours one day and got a severe burn on my nose - the only place not affected by TSW. And the rest of my skin felt more on fire than ever for days. Also, I use ice packs for my neck - wrapped up in t-shirts. My neck was bad for a few months and even though it is better, the ice on my neck seems to help with the hot/cold flashes and the intense feeling like you want to crawl out of your skin. Best to you and your family!

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  3. A right combination of steroids along with protein-rich diet and a good sleep can do wonders for even a lean built athlete in a short span of time.

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  4. I hope the research I am pursuing could help him. I wish a fast recovering.

    Please check out this page to improve TSW healing and support this project.

    https://www.gofundme.com/Red-skin-syndrome

    Andrey.

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