5 QUESTIONS WITH: Henni from rawsomesoul

This is the start of a mini series of blog posts that I hope you will all enjoy. As this blog expands, I want to open it up to others who have inspired me within our ever-growing (and bloody fabulous) skin community. One of the most wonderful parts of TSW is the group of amazing people I have met online from all over the world who truly understand one of the hardest things any of us will ever have to go through. One of these people is Henni, a blogger from Finland who it has been a pleasure to get to know over the last year via Instagram. Her story is inspiring and I think it will help a lot of you out there so I couldn't be happier that she agreed to do this!

1) Tell us a little bit about yourself and your skin journey.

Hi, I'm Henni! I'm 23 years old and live in Helsinki, Finland. For most of my life, I have had good skin apart from some minor eczema on my inner elbows. Around the age of 17, I started to develop more eczema on my body and face, I used steroid creams for the first time then. After that I used them every now and then. I moved to London in the autumn of 2012 and a few months after that my eczema worsened. My diet was very unhealthy, I barely exercised, partied a lot and was stressed, all of the things that I think contributed to why my eczema got worse. During the summer of 2013, I was put on a course of Prednisolone and given strong steroid creams to use continuously. I used them for about 1.5 years until I discovered TSW in February 2015. 

2) How did you find out about TSW?
Google. I did so much research online when my skin started to act crazy. I was desperate. I'm very grateful I found Itsan.

3) Sum up Topical Steroid Withdrawal in five words.
The most rewarding agonizing hell.

4) What made you decide to turn to a raw vegan diet?
Desperation? I had been sporting an oozy and scabby upper lip, the area below your nose, for 6 months. I tried so many things and nothing worked, I just seemed to be in a very stagnant phase. Two weeks before I went raw vegan, I had an incident with too much wheat grass juice powder that made me ill and not eat for 2 days. After that I only wanted to eat melon because it was the only thing that didn't gross me out. My skin looked so good those few days, I still had the scabby moustache but I could tell it was getting better as well. About a week later, I stumbled onto an instagram post about how a raw vegan diet helped this little boy's eczema and TSW as well. I started reading The Fruit Cure, the book mentioned in the post and read the testimonials on www.dehappy5.com. I watched a lot of videos about raw veganism / fruitarian diet on Youtube. I was desperate and decided to give it a shot and luckily, it paid off. My moustache was gone within a week. The rest of my skin was getting better as well and I felt great, I slept better and generally seemed more calm. In the beginning I went vegan for health reasons but I'm staying vegan for all the other reasons, for the environment and for the animals! 

5) What positives, if any, have you found from going through TSW?
I've got my health back! Well, almost, I'm not completely healed yet. My hands still have a lot of healing to do, as well as my face, it has this little rash but it is very minor, I can't even get a decent picture of it. Anyway, positives: I know myself better, I've learned so much about life and that you don't need much to be happy. I have gained valuable knowledge about health and I look after myself better and respect my body. My life was thrown off course because of TSW but now I'm excitedly seeing where life takes me. I'm grateful for going through TSW, because somehow in completely losing who I am, I found myself. 





Her lovely blog can be found here and definitely be sure to follow her Instagram here too for plenty of droolworthy food pictures, inspiration and stunning photography.

Thank you so much Henni x

So much love to all of you out there <3
Cara xxxx

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After TSW: What I have learnt one year on...

Quite simply, a year ago today I realised I had recovered from Topical Steroid Addiction. A flippant way of putting it but for me it was a sudden, immensely wonderful and in equal measure, bloody disconcerting thing. Apart from two separate issues on my hands and the odd minor rash, I've had what can only be described as dreamy skin. When I was really in the throes of withdrawal, I never expected it would be like this - at the time I had no idea what damage I would be left with after the beating my skin took and I didn't know if there would be any trace of the elephant skin that we all know too well. What has amazed me is for how destructive TSW is, it's like nothing ever happened and if anyone saw me and I said to them 'Yeah, for over two years I was pretty much housebound with a bad skin condition', I wouldn't even believe myself. Pre-TSW my skin was worryingly thin to the point you could see a scary amount of veins showing through, especially on my face and arm creases. Now they have all gone. Not only is my skin healthier and thicker, but the quality and colour of it is so much better. I am not saying this is a happily ever after but I am telling you that for this moment, I couldn't be happier. On yet another big landmark, I thought I'd mark it by discussing a few things that I've learnt about myself and TSW in the past year:

• When I first got better I made quite a few YouTube videos and in one of them: '5 Positives from my Topical Steroid Withdrawal' (here) I talked about the fact that I had more self-belief and had had the opportunity to really think about things. Now I realise I hadn't even scratched the surface and recently it's become apparent I have a lot of work to do. I am stronger for going through TSW and because of that, it's given me the courage to face some really tough emotional challenges head on - it's going to take some time but if I can get through 2+ years of withdrawal, I know I can do this.
• The small moments are the most precious. I said this in my last post but to feel the sun on my skin is something I don't think will ever get old ... apart from me getting all the premature wrinkles :-/ Also being able to wear black and whatever fabric I want without feeling uncomfortable is pretty darn great too - but the list is truly endless.
• It makes you realise what is important and just how special it is to be with the people you love and care about. In the last year, the simple act of having a day out with my mum or going out with a friend to have a meal or drink is still novel and simply wonderful.   
• The knowledge that this is MY skin and not an illusion created by using a dangerous drug is a pretty incredible feeling after spending, what felt like, most of my life shackled to various creams, ointments, topical steroids and other immunosuppressants. 
• Your health is everything. The end.
• The TSW community is the BEST <3
• Doubt, fear and anxiety are by far the worst symptoms of TSW.
• Lastly, I haven't got a bloody clue what triggers or helps symptoms of TSW. In the last year when I've gotten rashes etc, apart from a couple of isolated issues, I am still none the wiser what caused them. In conclusion, and I've said this before, my theory of the moment is that TSW is the biggest diva going and it will do whatever the hell it wants, whenever the hell it wants. Time is the only real healer.

I am sure there are many, many more but these are what came to mind first and to me, they are the most important. It won't feel like it, especially if you are really suffering at the moment, but you will get better. It's a long, immensely tough process - especially with 99.9% of people around you probably telling you that TSW doesn't exist. 

Trust your instincts and stay strong.

Cara xxxx

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A letter to my TSW self

Next Wednesday will mark exactly a year since I got better. Incredibly, just a few days before things suddenly changed for me, my future was hazy. I remember when I passed my second year TSW anniversary last June I felt, to be perfectly honest, a little cheated – I had made massive progress but was stuck in this long, stagnant phase and was still really struggling with my hands and left ankle to the point where it significantly limited what I could do each day. In celebration of my upcoming landmark, I thought I'd write a letter to the me of a year ago in the hope it can help some of you who are fed up and losing faith in TSW.

Cara xxxx

Dear tired & lost Cara of July/August 2015,

You have been dealing with this isolating, debilitating condition for over two years now. Most of the medical profession don't believe what you are going through is real with one doctor saying there's a quicker way to recover if you start his treatment plan involving topical steroids again, the people who you know and love are wondering if you are doing the right thing and even you (though you will never actually admit it) have questioned if whether going through this was just one giant mistake. You can't even wash your own hair or wear shoes much because your ankle is swollen and on top of that, you sweat like a waterfall if you so much as sneeze. You look at old pictures of yourself and ask why you never appreciated what you took for granted and are constantly thinking, will I ever look like that again?

Darling Cara (you may be shocked at the term of endearment you have given to yourself, but in the next year you will realise you need to love yourself), in a matter of days something miraculous will happen: you are going to get better. You are going to wake up one morning, look in the mirror and see someone new. You are going to be beyond ecstatic in the months to come but also terrified that it is all just an illusion and in turn, be constantly preparing for the worst at any moment. It'll take you a while, but there will come a time when you realise nothing is guaranteed and you will start to force yourself to live for every single moment and appreciate this new skin you have worked so hard for. Go feel the sun on your skin (maybe wear a hat though, because you end up collecting a few more freckles than you should), eat the damn chocolate (because it won't make a blind bit of difference) and revel in all the mistakes you will make as this time next year, you'll realise just how much you have learnt about yourself. You are going to change a lot, and it's going to feel uncomfortable for a long time, but wonderfully you will learn that without going through topical steroid withdrawal, you would never have been able to become the person you are today.

(And please scratch that desperately itchy skin if you need to.)

Love
Cara of the 14th August 2016 xxx

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My Topical Steroid Withdrawal update – Month 38

It's been another emotionally-charged time just like last month but most importantly, NONE of it was TSW related. I will cut to the chase and tell you about a few issues I've had over the last month: 

• On Tuesday 12th July I had a minor rash on my neck. No photo of it as it was so faint (and small!!). I should point out that I was in Aix-en-Provence, France from 10th-21st July so it could have been down to new surroundings, yada yada...
• On Wednesday 13th July I had sore lips and a slightly itchy knuckle on my right hand - in exactly the same place as last month which again only lasted a day. The next day my lips were dry but returned to normal around the 19th July.
• On Tuesday 12th July, I got sunburnt and because of this, on Saturday 16th July I decided to use sun cream. I don't use it (... I know, bad Cara) because of the moisturiser issue and also because I just feel that it is wrong - I do acknowledge that most people reading this will disagree with me. Anyway, I used it on the 16th and by the evening, I had an almost identical rash on my face to the only other time I have used sun cream in the last year: back in December when I was away in Verbier, Switzerland (see post) *I have also included a picture of the rash from December in this post, along with others from the last month, as always*. Also, the neck rash that had been lying dormant since the 12th, but was pretty much gone, also came up really red. If this makes any sense it felt like an allergic reaction opposed to TSW loveliness and I can't help but feel that the sun cream was to blame. It could be an elaborate coincidence but the next day I didn't wear it and almost instantly, the rash vanished on both my neck and face. My skin was a little dry for the next few days before it returned to normal. I hasten to add, no one could see anything, not even a speck of dry skin, just me. So basically my theory now is I'm allergic to sun cream and I should buy all the hats!
• On the evening of Wednesday 20th July I had nerve tingling and the feeling of thousands of tiny bugs crawling all over my skin (sound familiar?). It was enough that I had to keep checking that it wasn't bugs. It didn't worry me at all though and I just accepted it was my body tweaking and repairing itself after 10+ years of using topical steroids. 
• On Monday 25th July I had sore feeling skin especially on my lips. Unfortunately I didn't log when it stopped but it must have been over pretty quickly as I don't remember it!
• On the evening of Saturday 30th July I had the oddest tingling and wrinkling feeling in my fingertips. I know that's an odd way of putting it but I felt I should mention it as it instantly reminded me of when I would use topical steroid creams (Eumovate in particular) and the same thing would happen. I started thinking have I come into contact with it!?!?!? ... just your typical TSW-related anxiety attack. 
• Finally I just need to mention how over the moon I am with my skin - it's been absolutely fabulous and I couldn't be happier!

So there you have it! Another month gone and somehow, it's already August. Remember that time passes and what you are feeling is only temporary <3

Big hugs

Cara xxxx

The next two photos are of the near-identical rashes I have got when I've used sun cream in the last year.

The next two pictures are from Saturday 23rd July 2016. I was on a long walk with my mum in the countryside, it was hot and I had my skin bare (no sun cream ...) and it felt in-cre-di-ble. To feel the sun on my skin is truly one of life's greatest pleasures. I am sure I won't be saying that in twenty years when I've literally turned into a leather handbag but for that afternoon, it was heavenly. Even more incredible is that this time last year the sun hurt my skin so badly. I've come a long way.

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