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.

Monday, 1 April 2013

DAY 22 of no steroids

Hi I'm Joe's mum 'Jem', we only found out about steroid addiction about a week ago thanks to ITSAN http://www.itsan.org/. Joe was living with his dad part time for some years before coming back to live with me full time 22 days ago.
He was diagnosed with eczema 4-5 years ago and was given a lots of different steroid creams, lotions and tablets by the doctors and dermatologists that saw him. What pissed Joe off the most was the matter of fact way they told him there was no cure!! so just keep applying the creams! He describes it as having all hope of recovery taken away just by hearing that.

We've tried many different things in the last few years, change of detergents, clothes, diet, natural remedies and were beginning to lose hope.

Joe's 13 years old and for the past two weeks has been off school with a terrible flare up due to coming off the steroids. It's the easter holidays now so we're not under any pressures from school, but it's rubbish that he feels too weak, cold, shivery and itchy/burny to go out with his friends. He likes skateboarding and music and is a lively, lovely, caring character.

Whilst living with his dad it was hard to for us to keep up with maintaining a good diet for Joe and it was even harder to keep an eye on what medication the doctors were prescribing. He would come to stay at my house and eat good raw and cooked foods and fruit and use natural ointments and herbs and then go back to his dads and eat processed foods and use steroid creams and lotions!

So now we have done much research and joined the ITSAN forum to get help and advice and finally I think we're on the long road to recovery......

It's my hope that at some point when Joe feels a little better he can write this blog himself, but for now I'll try my best to document how we all get on and what we are doing to help him through this.

Today Joe woke up pretty late, we all did really because the clocks went forward last night. His face is pretty bad today very dry and flakey and a little weepy. His back was weepy as was his chest, arms and the back of his legs. He's been wearing a t-shirt in bed the last few nights beacuse he says he's fed up of waking up stuck to the bed! So we peeled off his t shirt and he got in the bath. We've been adding bicarbonate of soda, lavendar oil and tea tree oil to his baths which seems to ease his skin and stops infection.

He has a never ending appetite at the moment and it's hard saying no to sugary snacks and food that I think makes his skin flare up, particularly sugar as it's in bread and fruit! So porridge for breakfast with half a teaspoon of honey and some banana in, then egg and homemade chips with one slice of bread for dinner and tonight we're having wholewheat pasta and veg. I give him snacks during the day such as apple, pear and a banana but no fruit in the evening.

We know it's gonna be a long road to recovery but we remain positive and Joe is an absolute star!

I'd like to put a picture up of his face but i'll have to ask him to make sure he doesn't mind first.

I will be adding links to support groups, other peoples blogs and stories soon. Here is a link to an article about a 13 yr old boy who was cured of 'incurable ezcema' by steroid withdrawal http://www.prweb.com/releases/2012/10/prweb10076531.htm

The most important thing to anyone reading this right now is to know that there is an end to steroid withdrawal and ezcema all together!!! There are many people waking up to what has been going on in the medical world and big pharmas cruel deception. It is thanks to people that have gone through this that we have the information to get through it!

The following links are blogs written by adults and parents who have battled TSW (topical steroid withdrawal). Thank you to these people and all the others that are raising awareness and helping people like myself and Joe to beat this horrible affliction.

Nina's story - I'm nina, I'm about to turn 28- and for the past 9 months I have been through the hell that is topical steroid withdrawal. I was born with eczema and my parents were advised to use steroids sparingly when I was a toddler. My condition cleared until I was a teenager when it returned mainly on my hands. I would use a potent steroid ointment (betnovate) on and off. Then- 2 years ago, my condition flared and got worse and worse. I was advised to used super potent steroids (clobetasol) over my entire body. I did this for around 6 months. I was fully body red and burning. I then came across ITSAN and stopped steroids cold turkey. Here is a link to my you tube channel http://www.youtube.com/channel/UCbbb3z6ItXZoge-vGt0d91A 
(Nina is recovered woohoo!)

Kristina and Keira's brilliant blog - A story about my daughters scratchy monster and how he wreaked havoc on our lives http://scratchymonster.blogspot.co.uk/ 
(Keira is recovered hurray!!)

There are many more and I will be adding them for you very soon. Be strong, share your experience and talk to people so we can help others and stop big pharma from destroying more lives!