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Wednesday, 22 January 2014

Twitter

I'm still feeling really anxious about the oral steroids that I'm on but want to say a massive thank you to everyone who has shown their support even though I've had a bit of a relapse. I really can't believe how much strength and inspiration there is within the community, you're all amazing!


Since I'm on the steroids I'm hoping I'll have an easier ride for a couple of months until I have to descend back into TSW hell so I'm going to try to stop obsessing over my skin and enjoy it. Which means I *may* not post as much as I have been, so I thought I'd post a link to my twitter here, sometimes I like to rant on there too.


Love,
S x


Tuesday, 21 January 2014

I really didn't want to have to write this post...

I was almost tempted to just disappear off the radar but I figured I owe it to those of you who have supported me this past week!

So on Sunday I collapsed and was rushed to hospital. I was given morphine and sedatives because I was in so much pain with my skin and was pretty hysterical at this point. When I came round I was given a concoction of tablets but I was still pretty out of it and not really listening to what was said, just swallowed it all down desperate to feel better.

What I actually had was an antibiotic, an antihistamine and, yep, you guessed it, some oral steroids.

Obviously I'm absolutely devastated about this, I spoke with a dermatologist and he was really understanding about TSA/TSW, he said he definitely agreed that my skin problem was directly caused by me coming off of my Betnovate oiintment.

So, for now, I am on a dose of oral steroids which I will taper down quite quickly, and cyclosporine, an immunosuppressant.
I'm really sad I wasted those 8 days off topical steroids, they were really hard and I'm disappointed to think they were for nothing but... they have made me realise that Red skin syndrome/topical steroid addiction is very very real.

I'm very realistic, I know that at some point once I'm finished with oral steroids and cyclosporine that I'm going to have to go through TSW again, but right now that's just not something I can think about. I was a mess by Sunday, I hadn't washed or eaten properly and I just wasn't coping. I don't think I am really emotionally ready for the long, hard journey that is topical steroid withdrawal.

As for now, as you would expect, my skin is clearing up so well, it's hard to contemplate that something that makes my skin feel so good is so bad long term. 

But yes, I really don't want to disappoint or dissuade anyone, I wish I was strong enough to come off my steroids but realistically I'm not at a stage in my life when I can.

I'm going to keep this blog open because I know I will have to go through TSW at some point and I hope you'll all be here to support me in the future when I do.

Love,
Sarah x

Friday, 17 January 2014

1 week Topical Steroid FREE

Yep, only 1 week, I bet to some of you that seems like nothing and I know it's a tiny step in my big long scary journey but I'm proud of it.
I think of it this way:
Those 7 days I went through hell? Those are 7 days of healing. 7 days to bring me closer to healthy, steroid-free, (and hopefully eczema-free) skin. How exciting is that?!
Yesterday I received a really helpful and inspirational comment from a fellow blogger, Tracey (go read Tracey's topical steroid withdrawal blog!) She told me to remember that this is my CURE. All those years I cried about my skin and wished for a cure? Well here it is! I just have to find the strength to carry on through this difficult journey and keep my spirits high.

It's not always easy, today was really difficult, I'm just starting training in my new job and it's a lot of sitting around doing nothing which means a lot of time to sit concentrating on just how much my skin hurts! And tonight I have to work a shift at my OLD place of work, 16 hours work + tight itchy rashy skin = :( 
BUT (I'm making a serious commitment to myself to always include a positive in my posts!) tomorrow is Saturday and I get to sit in an Oatmeal bath all day long. Ha no but seriously tomorrow and Sunday are all mine, but I'm going to try to get some exercise to get those lymphs flowing and then my mum is coming to look after me on Sunday which I'm really excited about. Sometimes we all just need a hug from our mum don't we?

1 week down, LORD knows how many to go!
Staying strong.
S x

Thursday, 16 January 2014

There is such a thing as heaven...

...and it exists in an oatmeal bath.
oh my LORD I have never experienced anything so soothing in all my life, I can't believe it's taken me til now to try one.

So I'm in day 6 and I can't believe how bad my skin is...but I really can't be bothered to talk about that today. We all know how hard it is so I want to talk about some of the positive about my day instead :)

1. My new work friends really are lovely and so understanding of my TSW. They're happy for me to have a moan all day long and they understand when I look a bit down and offer me support. I've only known these girls less than a week so I really am so so grateful.

2. I went shopping after work and bought some new pjs and new bedding...NEVER underestimate the powers of fresh bedding. Even though I know tomorrow all my lovely new bedding will be covered in my crazy flaky skin it's still nice to experience it until then ;) 

3. OATMEAL BATH!!! Seriously, I'm sure most of you already have but if you haven't, try this NOW. I wanted to stay in that bath forever I was so content. And afterwards even though I feel no less dry or tight I just feel a lot less CALM and happy in the knowledge that there is something I can do to soothe the crazy itching and burning.

4. My housemates are amazing. One just made me an amazingly healthy juice to drink which I did right before I settled down with a gluten and dairy free cherry bakewell and a soya hot chocolate (the things we do for our skin eh!)

5. Tomorrow is friday!

So there we have it, 5 positives to weigh up all the horrible negatives that go through my head daily. I still can't believe I haven't even done a week of this yet! You people who have passed the year mark are so brave and inspirational, I have lots of respect for you and I hope I have the strength to join you.

S x

Wednesday, 15 January 2014

Photos

These photos were taken on DAY 2 of my steroid withdrawal, the skin was just starting to get red and itchy but I don't think the steroids had really worked their way out of my system yet. Still, I don't look great.. Here we go...



 Mainly still patches of eczema on my arm here, not really any major signs of redness/swelling/peeling
Face & chest are very dry, not really justified in the photos! 






Feet & legs totally covered in eczema but again, not really TSWified just yet, no real redness or swelling, just ugly old eczema!

Here's a photo I took today of my upper arm, it's the only one I took I really don't feel up to taking more and its usally dark once I'm home from work. But you can really see the way the withdrawals have started from this photo:
Angry, red, flaky, discoloured skin :( 
It's making me so miserable.

I know it's going to get a lot worse before it gets better and this is the hard part for me. But, my steroid creams are in the bin and I won't be fishing them out. So here's to a long, but worthy journey.

S x

Day 5 (Is that all?!)

Hi Guys,
Sorry about the lack of updates but I've been really suffering these past 4 days :(
My skin is like leather, or scales, or sandpaper, I'm not sure really, something really really red and really really flaky and really really dry and really really ANNOYING. To make things so much worse I've just started a new job and I am sitting in the training room itching like I've got a load of fire ants shoved in my clothes, constantly wriggling and itching and scratching. Luckily I've made friends with a lovely group of girls who are really sympathetic, even if they don't totally understand my TSW (it's pretty hard to explain isn't it!)
Anyway I'm just plodding along really, nothing new to report apart from the fact that I now wake up pretty much soaking wet every morning since I FEEL as though I'm freezing but in actuality I'm sweating and oozing all over the place. Great. I've got to be the most attractive person on this planet.

I've joined some forums and things so that I can get a bit of support. It would be lovely to be able to skype or speak over the phone with someone who is going through TSW...if anyone fancies this please get in touch. I've been updating my mum daily and crying down the phone to her (ha) but she doesn't really understand and she worries, with not living in the same city as me. So I'm on the hunt for a (preferably UK based) fellow TSW friend. It could be you....!

I'm going to post some photos from Day 2 in a second, I meant to do it on the actual day but really I've just not been feeling up to it. I've got a TINY bit of positive energy in me today so that's how I've found the time to write this post.

S x

Friday, 10 January 2014

Day 1, Shopping...and Burning

So I suppose this is officially day 1 of my TSW journey. My hydrocortisone, eumovate, fucibet and betnovate (yes I was on all those steroids simultaneously) are all in the bin out of my reach and instead i decided to go into town for a bit of retail therapy and to pick up some helpful things for my healing!

Even though it's only been 24 hours since I last used steroids on my skin, it is already tight, red and giving off heat like a radiator! Seriously, I live in a big draughty house and I feel like I could quite easily heat it just by being sat in my bed. I'm so itchy and raw and all I want to do is sit in bed alone but I have friends coming over tomorrow so I'm determined to keep my spirits up for that.

Anyway, here are the things I bought today.



I decided I wanted to buy some calamine lotion to soothe the burning of my steroid-free skin so I headed into Boots but was told they only had a calamine and glycerin cream. I checked the ingredients and there's nothing sinister in there so I was happy to purchase it, we'll see how I get on!
Then I popped into a lovely vegan & vegetarian cafe for lunch where a close friend of mine works and after spoiling me with lots of dairy and gluten free treats she recommended that I also buy some rosehip oil as this has worked wonders on her skin in the past. So, willing to try anything, that's what I've done!



I also bought some ridiculously inappropriate shoes to compensate for my ridiculously inappropriate skin and a lovely white t shirt which I plan to wear when there's no longer the risk of me bleeding/flaking all over it (lovely I know!)

Anyway I'm home now, covered in calamine and rosehip oil and burning up like a radiator and I'm very conscious that this is only the start...
I may well just hibernate!

I'm planning on uploading some photos tomorrow for my "before" pictures, so there's something to look forward to ;)

S x

Wilding

So I'm still awake and I just wanted to write a post about someone who has been really helpful to me in my already long journey for healthy skin.

I was up late googling eczema (as per usual, seriously, my browser history is shameful) and I came across this video:


I watched the video and related so much to Wilding (the guy in the video). Like him, I dream of healthy skin and find myself staring at people's smooth skin in envy (I know, I must look so odd). Anyway, I realised that Wilding wasn't actually going to reveal his skin secrets in this video and just assumed that this was another one of those things I would have to part with money for just to read a few pages in an E-book containing information I already knew. But, I stuck it out and followed his instructions and found out that it is totally free to read his E-book online once you sign up to his mailing list.


Even though I am now convinced that what I am suffering with is Red Skin Syndrome, I do still have flare ups of eczema too and Wilding's book has helped me to open my eyes and finally make the step to change my diet. Not only that, but his regular emails are so inspiring and supportive, I really wanted to give him a mention on my (admittedly very new) blog so that others can put themselves in touch with him and benefit from this guy. He's an inspiration!


S x

Introduction

Welcome to The Thick Skin, where I document my journey through Topical Steroid Withdrawal in the hope for clear skin! Please read my story and visit ITSAN.org for more information about TSW.


MY STORY
Hi! My name is Sarah.

I am an ex-pat from the UK living in South Korea (just to make things more complicated for myself obviously ;) )

I have suffered from chronic eczema since I was a baby and I have never really found any relief. 
By the age of 22, I have tried every single kind of eczema remedy you can imagine. ''Have you tried..." YES. YES I BLOODY WELL HAVE. 

I had also used topical steroids ever since I could remember but my skin just kept getting worse. Doctors would prescribe me stronger and stronger creams but nothing would work. I felt like my skin was on fire, I would cry whenever I got out of the shower because I felt like I had severe sunburn all over my body. 

On 10th January 2014, after some frantic googling, I found ITSAN

After a quick browse through the ITSAN website I became educated about something called Red Skin Syndrome, a condition where the skin becomes addicted to topical steroids. The result of red skin syndrome is that the steroids used to improve eczema actually end up making it far worse. This is explained a lot better on other websites, such as the immensely supportive and useful ITSAN website. 

Since finding the ITSAN website, I quit all topical steroids. This blog follows my journey towards healing.

My intention for thsi blog is not only to vent  my frustrations (and believe me there are a lot) but also to spread awareness. If you have used topical steroids for a long period of time and your skin is worsening, there is a good chance you are addicted. PLEASE check out the above links and educate yourself, this journey has been absolute hell but I would not take it back for anything in the world.

It is not easy but while topical steroids might have thinned my skin, my metaphorical one really is thick, most eczema sufferers will be the same. We're used to funny looks in the street and well-meaning strangers suggesting obvious remedies and we're used to being treated differently because of our skin, almost as if we're contagious. So, I know I've got the strength and willpower to give up my topical steroids. And so do you!