5 QUESTIONS WITH: Isaiah Quinn (and Stephanie)

I have a rather special 5 QUESTIONS WITH for you today. A warning in advance, it will break your heart completely but also make you rather angry about the senselessness of our condition. Topical Steroid Withdrawal is a hard enough battle when you are an adult - I started my withdrawal when I was a twenty-five year old woman and it was mentally and physically the hardest experience of my entire life, so whenever I hear about a child or baby having to go through it, I feel a little bit ill.

I will say now that hands down without my mum, I would never have been able to get through TSW. Period. She not only gave me her unwavering support, something I needed more than anything, but also looked after and cared for me when I was unable to do it myself. Because of that, my respect and love for all carers having to watch their loved ones go through something like this knows no bounds.

With all that being said, it is my absolute pleasure to welcome Isaiah Quinn and his wonderful (superhero) mother Stephanie to my blog. He began his withdrawal as a six month old baby on 22nd May 2013 and his story is truly extraordinary. All photos featured in this post have been taken from his blog http://isaiahquinn.blogspot.co.uk (which I highly recommend reading) with kind permission from Stephanie.

I shall hand it over to both of them now (and prepare to fall in love with this family):

1) Tell us a little bit about yourself and your skin journey.
Hi, everyone! My name is Stephanie but most know me as Isaiah’s Mom. Thanks for featuring us, Cara! Isaiah began TSW after only 10 days uses of OTC Hydrocortisone between 3-5 months old – we just did not realize it at the time. He was then hospitalized and received 4 rounds of IV Prednisone in his scalp - because he was so dehydrated that they could not find veins anywhere else - and multiple topical Rx steroids and Protopic during that hospital stay. That is when our hellish journey truly began, and he spiraled into renal failure and suffering beyond our wildest imagination. We ended up seeing 35+ doctors and specialists in 3 extended hospitalizations and no one had answers – all but 2 of them wanting to push steroids of all types. In the beginning, it was the most hopeless feeling seeing our sweet baby in such a torturous situation and having no help in the medical field.

2) How did you find out about TSW?

The week we came home from the first hospitalization, all hell truly broke loose in his little body. The ooze was so severe, that it looked like someone sprayed him with a water hose. It was wet, sticky and EVERYWHERE. It dripped off of his ears and ran down into his eyes. Our family could not have skin to skin contact with him in any form. He screamed for days on end and lived in our kitchen sink, as that is the ONLY place he found a little peace, rest and comfort. My husband and I were desperate for answers and were crying out to the Lord in prayer for help. Two days after we were home from the first hospital stay where the last steroids were used, my husband typed in a Google search, “steroid side effects” and then I typed something along the lines of “topical steroid side effects” and we found Joey and Jake – which led us to the ITSAN site and the old video from Dr Rapaport where he stated something along the lines of, “Stop the steroids cold turkey, brace yourself for hell on earth, and with time YOU WILL HEAL!” The heavens split and the angels sang… we KNEW we found what we were dealing with, and from that moment on, we tossed ALL steroids and pushed down deep the belief that Isaiah was going to heal.

We took the info to our precious pediatrician, and he agreed that this seemed to be what we were dealing with. Such a blessing, as he held our hand through two more hospital stays and helped us fight off the derms and allergists. He also put that steroids of all types were an allergy in Isaiah’s medical file. That helped, even though most every other doctor we saw raised eyebrows and tried to convince us otherwise. It was such an uphill battle, going against the grain, but the perseverance paid off! And in the end, Isaiah healed and now has the most beautiful skin.

3) Did you find that anything aided your healing?
He LIVED in our kitchen sink for months, with dish cloths draped around his face/neck/body, with really warm – almost hot – water running over him. I believe the hot water stopped the nerve pain and itch, at least momentarily. He even slept in the bath. We added Dead Sea Salt or Magnesium Flakes, and in the latter stages Pink Himalayan and sometimes Bragg’s ACV when he was in bumpy/itchy flares.

Modern prescription meds were failing Isaiah in the early stages - rampant infections, and allergies to most medications. In a time of fasting and prayer, God revealed to me how to begin making some balms to help him – the main two were our Lemongrass and Zinc. We used those thickly under wraps for over a year during the withdrawal, and Isaiah was the most comfy gauze wrapped in them. Before he could even speak, he would point to the balms on our kitchen island – as that was his triage center for months! – and then point to his face. They were soothing and helped the ooze and lesions. We make those and other balms in an old Etsy shop we re-opened in 2014 due to demand in the TSW community. Many have now found comfort in the same balms that first comforted him. Truly amazing and humbling.

We love Klaire Labs Therbiotic probiotic 100 billion powder for him – dosed daily, and also Sovereign Silver hydrosol orally and topically when we battled infections and sicknesses of all types. We used Similisan Irritated Eye homeopathic eye drops multiple times per day for him too in the thick of TSW.
In the early stages, we also used Walgreen’s dye free version of Benadryl – WalDryl – multiple times per day orally. That helped the itch mildly and helped him rest.

4) Sum up TSW in five words.
PREVENTABLE – xo to Briana
Torturous
Unnecessary
Sinking
Isolating

5) What positives, if any, have you found from going through TSW?
I have met the most beautiful, incredible, courageous, selfless, generous, remarkable and amazing people. (!!!) Those that have cried with us, embraced us, helped us, pushed us forward, pulled us up, kept us on course, encouraged us, loved us and helped us when there was no one outside of the community that truly understood. I am forever indebted to the TSW family of Mamas and friends that have surrounded us in our time of suffering, PTSD and our ongoing journey of mental healing. There are just no words that could ever adequately describe my love for each and every one that was part of our journey – and still are! I have said so many times that I can not wait for the day to meet those face to face that have been so supportive to us. Cue the tissues!!

I have been asked if I would still have gone through with it, knowing what I know now, having lived through so much suffering.. the answer is YES. Almost every doctor that we saw said Isaiah was “atopic” and would have to be on immunos and steroids his entire life to even have some form of normalcy. They were ALL WRONG. I know we made the best possible choice given the circumstances we were dealt and now we are reaping the rewards from pushing forward, far away from steroids and those opinions! Isaiah is a normal toddler with beautiful skin – med free! Life is good! And we are blessed.. blessed to be a blessing!

I am thankful to God for making beauty out of ashes and being our Rock when all else was sinking sand. Christ is our life and the Hope for all we believe. xo

On one of Isaiah’s blog posts I shared this quote that I love:
 “The best view comes after the hardest climb…”

Some words that I can share now about Isaiah and our journey:
HEALED!
Happy
Normal
JOY
Peace
SLEEP (!!)
Friendships
LOVE
HOPE
Courageous
TSW TRIBE
Brave
NEVER GIVE UP!

Isaiah’s full blog post with pics can be found here.
Isaiah’s pic only blog post can be found here.
Their fantastic TSW balms and Etsy shop can be found here. Stephanie has kindly shared this coupon for her store too. TSW coupon: REDSKINFRIEND – 15% off, no min order.

Thank you SO much for sharing your story with me <3

I feel immensely lucky to have gotten to know the most extraordinary group of people within this community who have inspired me so much and I think this post has highlighted the urgency of our cause. Something has got to be done and very, very quickly. We've got to keep spreading awareness about the dangers of these drugs so children and babies (and their parents) NEVER have to go through this ever again.

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)

Love to you all out there <3
Cara xxxx

5 QUESTIONS WITH: Nick from Eczemacism

Since starting my blog last year, the most fulfilling part for me has definitely been opening it up to others who inspire me through my 5 QUESTIONS WITH series. So far, there has been a shocking amount of girl power (fabulous!) and as a result, means I haven't featured a man yet ... but I've got a really great one for you today to make up for it. Meet Nick who runs the fantastic Instagram account Eczemacism along with a blog of the same name (possibly the best name ever).

His transformation is just amazing and so inspiring that I couldn't be happier that he agreed to take part! I'll hand it over to Nick:

1) Tell us a little bit about yourself and your skin journey.
I’m now just over 18 months into the TSW process. I have a family history of eczema, Mum gets a bit from time to time, but my grandfather (her dad) had severe dermatitis. My first case of eczema was when I was in late primary school/early high school. I developed a rash on my butt that grew and grew, went to the GP (I lived in a small country town) and he prescribed some steroid cream – I think it was Elocon. I used that and as far as I remember it cleared up but reappeared several times never giving me too much grief. I used moisturiser for dry skin on my face but no eczema on other areas of my body.

When I was around 21 I went to SE Asia to study for a semester of university and recall getting some heat rashes behind my knees and some ringworm occasionally but nothing too unbearable. I can’t recall if I treated them with steroids at the time. During the last week of my stay I ate something questionable and got violently ill. A few months after returning I started to notice a burning rash on my face that I thought was an allergy to dust, cats and whatever else but pushed it to the back of my mind. I also started getting spontaneous hives on my arms – only a few times but all around the time the itching and rashes started. Over time, the rash got worse, spreading across my face and finally all over my back and chest. My back was completely covered with eczema. I started taking cold showers at night because my face would stay red all day if I took a shower in the morning, stopped playing sport because it was too embarrassing with my tomato face and withdrew. I lost confidence dealing with people and looked to find answers. I knew something was wrong, something was taking all my energy and like a flash of light I realised that I must have a parasite. In absolute desperation, I couldn’t eat anything without flaring, my scalp was starting to ooze and the rash on my face was nasty, trusting the experience and judgement of my dermatologist to sort out my problems. This was it, I had eczema which was clear and he was the one to point me to the solution. I started using steroid creams of all sorts all for different parts of my body. I saw no real results and then started Prednisolone tablets. They were awful, made my skin great for a few hours but my anxiety went through the roof. I hated taking them but got addicted to the good skin and the safety of looking normal for a while. I used them as instructed by the dermatologist and used them whenever I went out to make myself look OK but the side effects, especially the anxiety made me stop. I stopped going to the specialist but kept on with the creams on my face mostly and just moisturiser on my body. My skin continued to flare but I worked out what not to eat as food was playing a huge part in contributing to the flares. I thought I was allergic or at least intolerant to everything and I lost so much weight. There were no online communities or anything like that and I suffered alone. It sucked so much, was holding me back socially and professionally, and I remember thinking that I can’t be the only person suffering from this, there must be an answer – it couldn’t be that difficult.

After a few years, I finally went to a holistic doctor who specialised in digestive problems to sort out the parasite that I thought I had but never got treated. I chose them to get away from the steroids and treat the source of the problem. After thousands of dollars in debt later and tests coming out of tests assessing all kinds of things coming out of me, it was concluded that I had leaky gut and I was sent off to a dietician. I can’t remember 100% but I think that I was still using Hydrozole on my face whenever I had flareups. The advice I got was great – we worked out that most likely I got a bug during my uni trip and things went downhill from there – this was now four or five years later. I went on to a diet and after three months felt that things were getting better. I learned a lot about healthy foods, living and eating well. I had a life again but I was still using mild steroids in the bad periods. Years later (I was using steroids the whole time intermittently) I started getting recurring eczema again on my legs and butt which came back and a weaker steroid for my face. I was using again now daily, and I didn’t know what the stuff was as it was made by the pharmacist in a nondescript tub. I also started breaking out in pimply rashes on my face that looked like adult acne and went to the doctor and he prescribed steroids – DermAid. This rash recurred three times (I have since learned it was eczema herpeticum).

I stumbled across a girl’s blog at that time, a severe eczema sufferer who was going through topical steroid withdrawal (TSW), and I thought that’s crazy, why would she do that… I just wanted to go to a doctor and get the strongest drugs to get this rash off my face. Four months later and a lot of stress from my job accompanied with the summer Christmas parties, eating/drinking etc I started getting eczema again on my arms and neck. I also broke out in the face rash again for the third time but just went with antibiotics this time. I’d had enough, I had these recurring infections, swollen lymph nodes, eczema on my arms and groin and an infected fungal rash in my armpits that I’d been battling for years and was treating with the cream Resolve Plus (steroid). I had no trust in dermatologists who were expensive and just pumped me full of steroids, no GP that I saw really cared about the cause of the problems so I researched online and started reading about alternative treatments. I still thought this was from candida overgrowth so I Googled candida diet and my healthcare provider and an Ayurvedic clinic came up. I started reading, liked what I saw and quickly booked an appointment. I was feeling good with the steroids doing their work clearing up my skin and went in to see the doctor. He was very thorough, so calm and explained how he would approach the treatment, all natural, no steroid creams or tablets, just diet, supplements and eliminating toxins. He told me to consider stopping using all steroid creams. I was a little dubious but went along. That was on 11 March, 2015. I started taking the supplements and the next day I started to feel terrible. I had a slight rash that I had been treating with Hyrdrozole (steroid) that came back with a vengeance. My face started to burn, puff up and my fungal armpit rash came straight back, worse than ever. My groin and leg eczema flared and my arms started rashing up. I thought it was the Ayurvedic herbs causing die off (could be the case) and started researching online about eczema getting worse after stopping steroids/starting herbs and I landed on the ITSAN page. It blew my mind seeing what people are going through.

Anyway, thanks to the ITSAN site giving me the encouragement (and scaring the hell out of me as to what might be coming) I took the plunge and have been steroid free for 18 months plus. I don’t use topical steroids, I never will again, I’m done. I haven’t flared since the early days and have been feeling good since about month eight or so, my skin is better than it’s ever been and I feel great. No diets, no creams or moisturisers. It’s been a hell of a ride but don’t regret it for one second!

2) How did you find out about TSW?
After I researched something like “stopped steroids symptoms worse” or something along those lines I ended up at itsan.org and from there I knew exactly what was going on.

3) Did you find that anything aided your healing?
Other than the amazing support I had from my family, friends and colleagues, the best decision I made during the process, deciding to live guilt free was the biggest help for me I think. Not worrying about scratching, not caring about cheating on diets and just not caring what others thought. It was truly a game-changer. Also for the itch, really focusing in on it, being aware that it can’t hurt me and letting the sensation rush over me like a wave, I guess like a micro meditation of sorts. Helped a lot!

4) Sum up TSW in five words.
Temporary, character building, life changing.

5) What positives, if any, have you found from going through TSW?
I’ve met some amazing people, fellow sufferers and carers, through this illness and it’s made me appreciate life in a different way. The biggest positive is feeling 100% better than I did when using steroid creams, not relying on medication and feeling like myself again. Literally like a layer has been peeled back and I am more confident, calm and ready for anything!

Nick's brilliant  TSW blog can be found here and click here for his inspiring Instagram account.

Thank you so much Nick xxxx

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)

Sending love and healing to you all
Cara xxxx

5 QUESTIONS (sort of...) WITH: Nina Sloan

When I started my Topical Steroid Withdrawal journey back in June 2013, there were only a handful of blogs and videos to do with TSW out there and even fewer stories of people who had actually recovered from topical steroid addiction. There were others too who just vanished from the internet, deleted their videos and blogs and as a result, made me have approximately one million breakdowns that I'd never get better and TSW was just some giant John Grisham-style conspiracy in which we were all being systemically wiped off the face of the earth. I always knew I was in this for the long haul but DOUBT AND FEAR ARE THE WORST SYMPTOMS OF TSW.

When I started this series I contacted those who inspired me and I knew if I could I would love to interview Nina who to me is pretty much a skin HERO. I saw her videos of her suffering, just as I was, then watched on amazed when she made a full recovery. With that being said, you can imagine how excited I was when she agreed to take part but asked if she could send me her full eczema and topical steroid withdrawal story instead which I could do with as I wished. After reading it, I was absolutely blown away and it felt to me like an absolute sin to break it up into five chunks for answers when it was already perfect as it is. I did ask if she could still give me the five words that sum up her TSW experience and she told me they are 'Absolute hell, but worth it.' I have included some of her before and after photos below that are just incredible.

I don't think I'll ever be able to put into words how grateful I am to Nina and the small group of people that kept me going through the hardest period of my life. I'm not going to get gushy or anything ... but thankyouthankyouthankyou *cries a waterfall of happy tears* <3


*Nina's story*
I have always had eczema. Since being a baby. My parents tell me stories of how they used to have to wrap my little hands and feet in coal tar bandages when I was really small just to try and give me some relief - to this day, the smell of coal tar is awfully familiar to me even though I don't remember this part of my eczema life.

As I got a little older, steroids came into the picture. I remember always having a tiny tube of Betnovate ointment at home and my mum would use it on super bad patches of my skin that needed it. I remember a specific time when I was 8 years old and I must have been having a flare on my back - my mum had to keep me off school (something she NEVER did unless I was really poorly) so she could lather my back in my prescribed emollients, followed by that awful greasy Betnovate ointment.

Ah, the emollients - I was ALWAYS being prescribed 'moisturisers' by the doctor, always. I remember having massive pump bottles full of Diprobase, then when that wasn't enough for my skin I was given Unguentum M - a much thicker, greasier cream. I used this for the longest time as my emollient. I still remember the smell of it and the texture of it - greasy against my skin and my clothes. Never ever being able to bathe without my precious tub of cream. Swimming lessons with school, holidays in the sun, trips away with the Girl Guides were all completely centred around my skin and my tubs of cream - every single time it rained outside I wouldn't dare venture out of the house in case my skin got a little damp and started with the awful itching that came from nowhere. Scratching myself to distraction, always being told 'don't scratch sweetheart, rub it' by my parents and my grandparents. 

I would break out in the most awful hives any time a dog hair touched my skin, any time the rain touched my skin, whenever I sat in the grass on a lovely summers day. I remember my first awful bout of hives, we were on a family trip to Gloucestershire and I think the family we were visiting had a dog, a dog hair must have got onto my skin and MY GOODNESS I had never experienced itching like that until then - along came the antihistamine medicine. An awful tasting liquid that I would have to take any time there was a chance that these awful, itchy white blotches would appear. 

I always remember having eczema on my hands and wrists. It was particularly bad when I was going through puberty -hello lots of Betnovate ointment- and when I was at university. I was always ashamed of my hands, throughout my whole childhood I wouldn't show them to anyone, why would people want to see my 80 year old hands?! All scabby and red?! I carried on using the Betnovate ointment as sparingly as I could, being careful never to put it on my face (my mum always told me 'never put it on your face sweetheart, it will thin your skin'). Early to mid twenties - still using the Betnovate sparingly to control my incessantly itchy, red, flakey hands. 

*A little about me. I have always been an active person and exercise has always been my passion. I remember doing aerobics in my living room with my mum when I was five and it was so much fun. From the age of 14 I would regularly attend aerobics classes with my mum. It has been my dream since my early teens to become a fitness instructor and work with other people to better their fitness and lifestyle*

At age 26 I went through a massive life change which was extremely stressful - this caused a massive flare of the eczema on my hands. The Betnovate could no longer control it so out came the bandages and a trip to the doctors meant a stronger steroid cream was prescribed along with a thicker, greasier emollient (50/50 cream). I used the steroid and the emollient and wrapped my wrists in the bandages to try and stop myself from scratching - the itch was insane. The eczema started to spread, further up my arms - more steroids were used. It carried on spreading, onto my chest, my stomach, my back, my legs, my feet - to areas I had NEVER HAD ECZEMA.

*At age 26, I met Kelly. I moved in with her and started training in the gym with her - my body shape completely changed and I was super happy with the way I looked for the first time in my life. During this time, I was still teaching pole fitness classes and I also gained my Zumba instructor license. I was finally starting to do the things I had always dreamed of doing, I could soon start teaching my own classes! I started working closely with my favourite fitness instructor, a lady whose classes I used to attend regularly throughout my teenage years. She mentored me until I was ready to teach on my own, and I took over 6 classes per week as she moved to Spain*

Back to the doctors I went, a stronger steroid (Clobetasol - the most potent topical steroid available) was prescribed, along with a different emollient (Dermol - that awful stuff in the green packaging). Off I went with my precious prescriptions and the instructions to lather myself in the Clobetasol, let it sink in for half an hour, then apply my emollient. Surely this was the end now, this stuff was the magic potion that was going to make me better, and for a while, it did. As long as I followed the doctors instructions and piled on this steroid cream my skin was lovely and white for a while, then it would go red and itchy and flakey, until the next time I applied the cream - and that process continued for around a year. By this point, my whole body was going through these awful cycles of hell, completely dependent on the steroid cream. (I remember asking my partner to apply the creams to my back (because I couldn't reach) and I would watch her vigorously washing her hands afterwards to remove the steroid from her skin). 

*I remember carrying a tube of Clobetasol in my gym kit bag and I would apply before each class I was teaching so I could feel confident that I wouldn't start itching*

At this point I was having to take time off my day job because my skin was so sore and I had no idea what was happening. I was put on courses of antibiotics because the doctors thought my skin was infected - they did nothing to help. I was referred to the dermatologist at my local hospital who gave me patch tests (those awful patches that cover the whole of your upper back and you have to leave them on there for THREE DAYS whilst they drive you mad) that came back inconclusive - if I wasn't allergic to anything, then what the hell was causing this?! I tried light therapy, it did absolutely nothing.

I have the most vivid memory of the moment I realised what was happening to my body. I sat at my desk at work, scratching and peeling my skin and I googled 'effects of using steroid creams thinning skin' and there it was, on my screen right in front of me. A video of Kelly Palace and Dr Rappaport talking about 'Topical Steroid Addiction' and 'Topical Steroid Withdrawal'. I took my phone into the toilets and sat in the cubicle watching the video that ultimately changed (and saved) my life. I cried in utter relief right there and then in that toilet cubicle, on my own, with my skin falling off. I read over the posts in the Google forum and read all about ITSAN, read the checklist of symptoms that point to TSA and TSW - I had every. single. symptom. 

OK - So now what?? After reading all of these posts and watching these videos, all I had to do was stop using the steroids - ok ok, I can do that. I called my dad and told him what I had discovered. The most supportive man in my life told me 'Nina my duck, it makes complete sense, do it...' From that moment I have never touched another steroid. Firstly, I told my mum and my partner Kelly about what I was about to embark upon (what WE were about to embark upon). I knew that with the support of my parents and Kelly that I could get through this. After everything I had read on the forum I knew it was going to be awful, and long, and unpredictable. What I also knew though, was that at the end of this horrid journey I would have white skin, smooth skin, itch free skin - these are things that an eczema person's dreams are made of. 

So off I went into the darkest time of my life. The months that would follow were the worst I have ever had and I could never have been prepared for what was about to happen. Here is a list of the things that happened to my body:

1. Redness- My skin went so red that I looked like I had been sat in the midday sun for a full day without any sun protection.
2. Swelling- My whole body swelled up to around twice its normal size. My legs were so swollen I couldn't walk and I couldn't stand up straight.
3. Itching- I had never experienced an itch so intense. Imagine, you know those little insect bites that you get that itch like absolute crazy - yes, that feeling, across your whole body, at the same time, with no escape from it. I would go into a trance when I was scratching because it felt SO good **Please please please don't tell a person with TSA/TSW to stop scratching, its impossible.**
4. Shedding- My skin would shed constantly, I would wake up in the mornings and my bed would be FULL of skin. 
5. Hair loss- All of the hairs on my arms and legs fell out, my eyebrows fell out, my nose hairs fell out and I lost my sense of smell.
6. Ooozing- My skin would ooze a really weird smelling yellow liquid- it wasn't infected, it was just oozing and wet. 
7. Nail infections- I was scratching so much that skin would get trapped under my nail beds and cause painful infections underneath my nails. This happened so often that popping the infected blisters and getting rid of the infection became part of my daily, hellish routine. 
8. Soreness- All of the creases in my body became sore and cracked open. I couldn't straighten my fingers, I couldn't stand up straight, I couldn't smile because my lips would crack open. 
9. Lack of sleep- I literally couldn't sleep at all. I ended up using sleeping meds from my doctor.
9. Eczema herpecticum- Towards the end of my withdrawal I got this herpes like infection across the white areas of my body. It looks like little volcano type lumps with a scabby head and it spreads like WILDFIRE. Antivirals are needed ASAP if you suspect you or your loved one has it. My doctors sent me away THREE TIMES telling me it was nothing to worry about - I had to consult the members of the TSW Facebook group, go back to my doctor and tell them exactly what I wanted. Needless to say they gave me the antivirals without question, my herpecticum cleared. 

My skin would go through cycles of being hellish red itchy and oozy, and then would go into a shed. I moisturised throughout the whole of my withdrawal and would alternate between the following:

1. Coconut oil (YOU NEED THIS IN YOUR LIFE)
2. Castor Oil
3. Vaseline (a thin layer)

I would use the following things in my bath:
1. Dead Sea salts
2. Oats in a sock (squeeze out the lovely milk)
3. Coconut Oil
4. Aveeno Colloidal bath (a baby product, I used this as my skin was becoming stronger towards the end of my withdrawal)

I took the following medications:
1. Antihistamines (Loratadine, Cetirizine and Atarax)
2. Trazodone (a hypnotic sleeping pill - without this I literally could not sleep)
3. Aciclovir (this is the antiviral that I took for eczema herpecticum)

As I was going through the process of Topical Steroid Withdrawal I realised that making myself comfortable was THE MOST important thing. I had to get cover for the classes I loved teaching, I had to put my dream on hold for a while. I remember turning up to teach Zumba, standing on stage with legs so swollen I could barely move and a mouth that I couldn't open properly to instruct. I was heartbroken.

I would spend hours and hours in a scorching hot bath drinking cold water. I drank water straight from my tap. I ate lots of lovely tasting sugary foods and I didn't cut out anything from my diet - in fact, when I was withdrawing my diet was totally unhealthy compared to my usual healthy, clean way of eating. I lived in my bath tub. 


During my withdrawal process we went on a holiday to Egypt. The whole ordeal was horrendous for both myself and Kelly but we did it. We came home, ready to settle into our bizarre routine with this skin condition ruling our lives - then we had a house fire. Thankfully the fire was confined to our utility room and we were fine, but our washing machine and tumble dryer were completely ruined- not good for a person who is changing their PJ's four times a day and soaking everything they wear with blood, ooze and thick greasy oils. Mum to the rescue again. As well as nursing me constantly and driving 26 miles a day just to sit next to me in the bathroom - my mum then became chief clothes washer and washing basket carrier. We often joke that she 'had a wash basket strapped to her arse'. We laugh - but it's the truth!

As well as that, Kelly was having to work full time (Kelly's full time hours at that point were 16 hours a day), sort out the house that had been smoke damaged, look after me, look after two dogs, and look after herself. I don't know how she did it but she did. She even put up with my ridiculous demand to travel to Norfolk to see her parents at Christmas - this was ludicrous because they had just moved into a new house with no bath tub. They organised it so that we could go to their old house and use the bath whilst I was there but it wasn't easy and I was so demanding of Kelly. I should have just let her have a rest but the thought of her leaving my side was just too much. 

I have some videos on YouTube, please watch them as they will explain everything (here). I talk about my experience as it was actually happening. The experience of TSW is so traumatic that I can't remember certain parts of what happened and how it felt, I just know that it was awful. I couldn't have done it without the support of my immediate family and my partner (now wife) Kelly. It's because of these incredible people that I was able to stop working, stop leaving my bath tub and just focus completely on myself and my skin and just heal. I will be eternally grateful for the support I was so freely given during that awful time. What I will say though is that every hellish second, was so so worth it. 

**As I began to feel my skin getting stronger (you just 'know' when its happening) I started going to the gym again. Gentle workouts to begin with and I would always have a change of clothes in my bag so that I could get changed straight after I had finished as my sweat would make me itch. I could start teaching classes again, just the odd one here and there and I would go along whilst other instructors were teaching. I was soon back to my regular routine with my day job and my Zumba classes. It was at this point that I set myself a goal. I wanted to stand on a stage, in a bikini, covered in tan, and show off my new skin**


I healed in March 2013 and my life hasn't been the same. I am no longer ruled by my skin, I no longer need endless prescriptions from my doctor. I don't itch, I don't shed, I don't ooze or come up in hives. I can just live inside this beautiful, smooth, white skin that goes brown in the sun and only goes red when I exercise and get hot. I can use whatever moisturisers I want, whatever wash powders I want, I can wear perfume, wear makeup. My full time job now - I am a sports massage therapist and Zumba instructor. Thats right - I MASSAGE OTHER PEOPLE for a living without having to worry about what products they might have used on their skin. I have two dogs and I can roll around on the floor with them and I DON'T ITCH! I can go out for a run in the rain and enjoy the cooling, refreshing water hitting my skin as I run and I don't have to panic. I can go on journeys without worrying about whether or not I have a pot of cream to hand. All of this being said though - I don't take my skin for granted. I still use natural products on it, my massage oil is -you guessed it- coconut oil, I eat a clean and healthy diet and I exercise every day. I am back at Crossfit and I am back on the pole. I use a good quality sunscreen in the sun and don't sit out for too long. In November 2014 I hit my goal - I stood on a bodybuilding stage in a sparkly bikini, tanned up to the eyeballs, face full of make up, and I loved every second. My mum, dad, Kelly and my best friend Sarah were all in the crowd cheering me on. I treasure the relationships I have with those who helped drag me out of the darkness because they will never know what they did for me, I can't put it into words. 

To watch her inspiring videos (that helped me so much through my own withdrawal), click here.

Thank you so much Nina <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)

Gosh, I love our community!
Cara xxxx

Tips to help with Moisturiser Withdrawal

Continuing on from my last post (here) all about moisturiser withdrawal, here are some tips and tricks that I think have helped me use next to no moisturisers and actually thrive for well over two years. I would like to say again that moisturiser withdrawal won't be for everyone – we are all different and this is only my personal experience. If you feel your skin could benefit from moisturiser withdrawal, then I do hope you find these tips useful.

1) Take moisturiser away slowly over time.
I talk about how I did this in the last chapter but in a nutshell, I tried to stop using moisturiser many times through TSW by going cold turkey, but it was awful, and I always gave up after a day or so. By taking them away slowly, I was able to give my body time to adjust to such a drastic change. For a while, it's not going to feel like skipping through a field of daisies, but it was bearable and for me, it was the right decision for MY skin.

2) Cover your skin against the elements.
Just before winter hit the year I recovered in 2015, I was really worried how my skin would cope with the cold weather, so I decided I would try to keep my skin covered as much as possible and would always wear gloves when I went out and wrap a scarf around my face. I’m not sure if doing any of that helped but for the whole of winter that year, I didn't feel like I needed to use any moisturiser. The following summer, because I think I have an allergy to an ingredient found in most sun creams, I wanted to find something lightweight to cover my face from the sun and came across something called a Choob. They can be found in most outdoor retailers and are absolutely brilliant. Because they are designed to protect your face, they stay where they are meant to (unlike regular scarves). They are also very comfortable and you can still breathe whilst wearing them. I will warn you now that people's reactions when you have one on are absolutely priceless and without fail, at least one person will ask if you are about to rob a bank – but remember, this is about you and no one else. It's YOUR skin. Now, I still try to keep my face protected where possible – whether it’s from hot or cold weather – but over time, my skin has become stronger, more resilient, so there is less of a need to and as a result, I’ll probably resemble a leather handbag by the age of forty.

3) Avoid long, hot showers/baths.
I know that sometimes nothing feels better than a long, hot shower or bath, but it will dry you out. In the early months of TSW, or when you're really suffering, by all means have a long, hot shower or bath as it's not going to change things and you need as much comfort as you can get … but if you are serious about doing moisturiser withdrawal long-term and want to see some results, I'd definitely turn down the heat and cut the time you spend in hot water. Now, I have a short, warm shower pretty much every day and very rarely take baths.

4) Pat your skin dry and never rub.
This is a continuation of my last point but try where possible when you get out of the bath or shower to gently pat your skin dry opposed to rubbing. I think small changes like this can really make a massive difference.

5) Avoid cleaning (how fabulous!).
Last year especially, I found that my skin really didn’t like it when I cleaned or came into contact with cleaning products which contained a lot of chemicals. Pretty much straight away, my lips would start to tingle before drying right out and my skin overall felt slightly irritated. Oddly enough, my mum experienced the same problem with her lips too. Something I have found to be extremely beneficial that I still do (and love) to this day is to wear cotton gloves under my rubber gloves every time I need to use them. It creates a soft, protective barrier which I cannot recommend enough. I get mine at Boots, but they sell them practically everywhere worldwide.

6) Don't lick your lips.
Try not to lick your lips – especially if they feel dry or irritated as it will only make matters worse. I realised a few years ago that when I concentrate hard on something, I press my lips together or lick them. Even now, I’m still trying to get out of the habit of doing it as my lips can occasionally get chapped or sore if I’ve eaten too much sugar or have a cold, so it can be like rubbing salt into a wound.

7) Don't over-wash your hands.
I hasten to add that I don't go around with dirty hands, but I am very conscious of how much I wash them. We all know that soap dries out the skin – so does repeatedly putting your hands in water. When I do wash them, I’ll use a sensitive soap from Dove that I absolutely love as it’s so gentle (which I talk about in a chapter all about my current beauty routine post-TSW). I try to avoid where possible using stronger, perfumed soaps as I tend to find they really dry out the skin on my hands, especially if I use them over a prolonged period of time.

8) Turn off the heating.
I think you are inevitably going to experience some kind of reaction to colder weather, especially when mixed with any kind of heating – most people do. I always find that my skin, even now, is much drier during the colder months but notice an even bigger difference when I use an electric fan heater as opposed to central heating. Electric fan heaters spew heat directly into the atmosphere and onto your skin which is much harsher, whereas central heating warms the air through pipes and radiators so the heat is contained. Either alternative isn’t great so try where possible to use layers instead of any kind of artificial heat.

9) Keep hydrated.
Apart from when I go out socially, the only two things I’ll ever really drink are water and green tea. On an average day, I'll have two to three cups of green tea after meals which I love then drink water the rest of the time. Instinctively, I have always drunk a lot of water and tend to consume around two litres a day. I would like to state that I am six foot and lead a very active lifestyle so that amount of water feels right for me but might not necessarily be good for you.
I feel like I need to add that I have never liked coffee and in the last few years, I've read a lot of reports about it drying out your skin, so it might be worth cutting out to see if it makes a difference.

10) A balanced diet.
Now this is where I think diet can really make a big difference. I may not believe that food can ‘heal’ topical steroid addiction, but I do think that a healthy, balanced diet can do wonders for the overall quality of your skin. I try to have an avocado every day and eat oily fish three to four times a week. There are many studies about how refined sugar can affect your skin negatively and I couldn't agree more. Now, I find that when I have too much refined sugar, it tends to dry out the skin on my lips. If you have ever looked at my Instagram account then you will know I definitely haven't cut it out but I try to avoid it where possible. I have also never taken any supplements as I prefer getting nutrients from the source if that makes sense. I hope I don't offend anyone reading this, but I do not believe that supplements are good for you – that is only my opinion, and I am sure there are countless studies out there which prove me wrong.

11) Listen to your body.
It sounds so simple but if you take the time to listen to what your body needs, it will tell you. I say this a lot but you’ve got to do what feels right for YOU.

Of ccourse, like all things to do with our particular under-researched skin condition, this is all guesswork, but I would be curious to know what would happen if I didn't apply all these tips to my life … and I don’t think it would be good.

Much love to you all
Cara x

My skin story & how I stopped using all moisturisers

I have got to the point in my skin journey where I feel like I've got to get all this information down before it slips away - it already feels like it happened to another person so to have it here for you, and for myself really before it's gone, is extremely important. To be able to talk about moisturiser withdrawal, I think I need to first give you a bit of background so you can fully understand the magnitude of my decision to stop using all moisturisers. Seeing as it's Eczema Awareness Month too, I can't think of a better time to talk about it. As there is so much to cover, I have split this up into two separate posts: my skin story and moisturiser withdrawal experience then tomorrow I will be posting some tips (here) which I believe have helped me thrive for well over two years. This post is much longer than I anticipated but I hope you still find it helpful.

From the moment I was diagnosed with eczema when I was six months old, I was given moisturisers – so we are talking about a story which spans well over twenty-five years. It's an epic tale which ends with the protagonist freed from the at times suffocating clutches of her skincare routine. Over the years I've used creams, ointments, lotions, bath preparations, oils and anything else in between that have been marketed to help ‘manage’ the enigma that is eczema. There was a period of time in my childhood where it wasn’t much of a problem, but when I went to secondary school, aged eleven, my eczema returned and with it came all manner of treatments once more. I remember every doctor’s appointment I went to throughout my early teens – I would come out of the surgery clutching a prescription, full of hope that this was the cream that would help me. Nothing did of course – apart from topical steroids, and we all know how that relationship turned out.

I remember finding it funny that most labels on my moisturisers said things like, side effects can include red, irritated skin and rashes, when in effect they are being used to treat a condition that is essentially red, irritated skin and rashes. When I was a teenager, I was referred to the hospital and initially seen by a nurse called Jeanine who to this day, is the BEST person I have ever talked to about my skin ... why? Because she had eczema herself. Unfortunately, Jeanine; the nurse of dreams, left the hospital and I was seen instead by doctors and dermatologists who would either tell me to use strong steroid creams and immunosuppressants or throw a new emollient at me to try that they found in that blasted book of theirs which listed all medicines and treatments known to man. This pattern repeated itself throughout my teenage years and amongst other things, I had a course of oral steroids, topical steroids and let us not forget, Protopic. I then went through early adulthood using a mixture of topical steroids and moisturisers every day – all because I thought this was the only way to ‘manage’ my INCURABLE eczema.

*That petroleum jelly life*
Nearly two months into withdrawal on 
Sunday 28th July 2013

Fast forward to Thursday 6th June 2013 when I made the best decision of my life: to stop using all topical steroids and immunosuppressants. For the first six to seven months of withdrawal, I used petroleum jelly about four times a day as for me, that felt like the only way I could keep my skin barely functioning. Petroleum jelly was also recommended by many going through withdrawal at the time, but I found the process of using it pretty traumatic to be honest. Amongst other things, it would take ages to sink in, never came out of my pyjamas even after being washed so the material always felt stiff and cold, and it broke my mum's washing machine.
During those early months of withdrawal, I did some rather drastic experiments where I would take the petroleum jelly away and use nothing, but I can safely say the discomfort was unlike anything I've ever experienced in my life, and I would only last a day or so before I’d have to use it again. At that point, I was using petroleum jelly on the entire top half of my body – I was lucky and never had to use it on my legs. I then decided to try tapering, and this is where I had more success. Each week, I would take petroleum jelly away from a small area of my body then the following week, take another area away. I started with the places that were the least affected until I was left only needing it on my face and hands; the two areas I suffered from TSA the worst. When I got to that point, I was in a bit of a stalemate; I found I was too scared to take petroleum jelly away from those areas as I still felt like I needed something so instead, I decided I would use lighter, more natural creams before taking the final plunge to being totally moisturiser free. I weaned myself down to shea butter (which wasn’t brilliant but did the job ok) then after that I tried coconut oil, but because my skin hated it, I thought there was no time like the present and from then on, I was able to completely withdraw from using all moisturisers. I think this all happened around February/March 2014 and looking back, I wish I had written down the exact dates.

*Spot the moisturiser*
Taken during the period when I used moisturisers 
again briefly on Monday 2nd March 2015

For a while, I remember my skin was happier when I used nothing on it. I was very dry and still had pretty tough symptoms from TSW, but knew I was better off without anything and was seeing lots of improvements. Things changed when I hit my anniversary flare in June/July 2014 where amongst other things, my hands went to a whole new level of bad and my left ankle suddenly started flaring terribly. To make matters worse, when the colder weather hit the UK, my skin was so dry. For months, I resisted using any moisturiser as I knew I would be worse off, but around February/March 2015, my mum was really worried about the deep cracks in my skin and how they would increase my chances of infection. At this point, I thought I would at least try using moisturiser again to see if it could help because I was really suffering. For the first few days things seemed ok, but it didn't take long for my skin to need more and more cream to achieve the same level of moisture. My skin was also getting extremely irritated and inflamed and rashes were spreading to areas that had been pretty much back to normal for months. During that short period of time, I tried quite a few generic high street moisturisers which had the same effect on my skin.

In March 2015, I decided I was better off without moisturisers (again) and as I had only been using them for a short time, and because I was just so irritated, I didn't even bother gradually withdrawing – I just cut them out completely. After that, things slowly improved. The redness and irritation brought on from using moisturisers again pretty much disappeared straight away and since then – bar my legs (because of shaving) and very rarely, my lips – I haven't used a single thing to moisturise my skin. Now, my skin moisturises itself and any issue I've experienced has been directly related to TSW and nothing to do with needing moisturiser – even better, I sometimes get a greasy scalp.

This is all still a work in progress, and I may feel that one day I need to use moisturisers again properly (hello winter!), but at this moment in time, my skin is happiest when I use nothing on it and just leave it alone. On the days where I don’t need to shave my legs, my routine consists of getting out of the shower, putting deodorant on and getting dressed – that's it. It’s still such a novel experience for me after a lifetime being restricted by what I could and couldn't do. Back when I had eczema, I used to dream of being one of those people who could do something like swim in the sea on holiday then get out and let the sun dry their skin and not have to immediately slather themselves in moisturiser to feel comfortable again. Now, I could actually do this if I wanted to. Going back, I would love to have seen what would’ve happened to my eczema if I had just left it alone and let any rashes I had dry up on their own, like I do now, but hindsight is a pointless exercise, isn't it?

If you have made it through this whole post, congratulations, and to anyone who is unsure what to do for the best, you've got to do what feels right for YOU. There is no right or wrong answer and not everyone will benefit from moisturiser withdrawal so trust your instincts.

Cara xxxx

Click (here) for some tips with Moisturiser Withdrawal.

5 QUESTIONS WITH: Maleeha from Pretty Flakey

It's a brand new week and I have another fabulous warrior for you to meet. I have absolutely loved working on these posts and I hope you have enjoyed them too. What I adore about our community is how varied our journeys are and even though we may be on different paths, we all arrive at the same destination.

This week I am talking to Maleeha from the Instagram account Pretty Flakey and I know you're going to find her story inspirational, so without further ado, I'll hand it over to Maleeha:

1) Tell us a little bit about yourself and your skin journey.
Eczema runs in my family, my mum has minor cases of it, my brother suffers severely from it and throughout most of my 21 years of life, I experienced mild patches of eczema on the backs of my legs and the inside of my arm. Nothing extremely drastic though. This changed when I had eczema on my eyelids, I went to my doctor about my usual small patch on my leg to get another steroid cream and he suggested 'applying a bit on my eyelid'. As a 14 year old kid, I had no clue what he meant by 'a bit' and I just lathered it on. This is where it all started for me. I continued to do this for a long time, a year or two, my patches began to spread around my eyes and then I found out about TSW and stopped steroids completely. A few days later my rashes spread all over my face and my symptoms began, insomnia, burning, itching, irregular body temperature etc. For 2.5 years, I was experimenting with creams, 'cures', alternative treatments such as Chinese soups to detox my body and all sorts. Nothing seemed to work for me but with time, eventually my face healed. I still seem to get the odd small rash around my mouth when I am stressed, or around September-October time. I have no idea why and this is something I am still figuring out, but most of the time I am 100% healed. Throughout my skin journey I had no support from any doctor or dermatologist, they thought I was completely crazy.

2) How did you find out about TSW?
At college, I was applying steroid cream to my face and one of my friends, who wanted to be a doctor, said to me 'is that a steroid? You don't put that on everyday do you?' To which I replied, 'Yes I do, why?' He replied 'It's really bad for you, you know that right?' That day I went home and researched on google about side effects of steroids and came across ITSAN which informed me of TSW.

3) Did you find that anything aided your healing?

Honestly not really. I went to the gym and ate healthier at one point but I don't think this helped that much, I just felt good internally. I am a full time student so I was always under stress with exams and I know this didn't help me at all. I think being able to relax would have aided my healing. In terms of remedies, something that soothed me was washing my face with oatmeal and using Vaseline. These two things were a godsend for me and truly helped my skin. (I know Vaseline doesn't work for many, but it helped me).

4) Sum up TSW in five words.
Stressful, Painful, Rollercoaster, Frustrating, Humbling.

5) What positives, if any, have you found from going through TSW?
My younger brother suffers extremely from eczema, his medications have affected his eyesight as well as his ability to study, and socialise. The main positive of TSW for me is that I gained knowledge, which aids me in supporting my brother with his condition. Also, I am a lot more appreciative of my skin than I ever was before TSW. I am also a lot more understanding of people with any conditions at all because I understand how it affects your life and how it changes you. I have also lost a lot of trust with doctors and our medical system. I question everything and conduct my own research when I am recommended any medication from a doctor. This is a useful skill  I will carry with myself forever.

Her Instagram account can be found here.

Thank you so much for taking part Maleeha xxx

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)

Big hugs and lots of love to you all <3
Cara xxxx

My Topical Steroid Withdrawal update – Month 40

It's amazing what can happen in as little as a month! Since my last monthly update post I handed in my notice and moved back in with my mum - a decision that was definitely right for me. I now live very close to the English countryside and I find there is something incredibly healing being so close to nature and I couldn't feel happier. As always, there are a few things skin related that I want to talk about:

• From the start of September I noticed that my skin was slightly lumpy - exactly how it was a few months ago before it developed into an odd rash (that I talk about here). Like then, I know stress was to blame.
• On Wednesday 7th September 2016 I got a large hive on my face (pictured below) that again, I know was definitely down to stress (you will notice a stress-related theme in this post). Over the next few days it went down until it had gone.
• On Friday 9th September 2016 I noticed there was a slight difference in a small patch of skin on my left wrist and by the last knuckle on my right hand. The following day there was some redness and tightness in both areas. The issues were so small and faint though that my camera wasn't able to pick anything up! The weather was very changeable so it may have been something to do with that - or the fact that I started back at work properly (... or good old reliable stress??). The rashes never really materialised though and all I was left with was a bit of dryness on Sunday 18th September before the skin returned to normal. The lumps also went down too.
• On Thursday 22nd September 2016 my skin started to get lumpy again. The following day my lips felt really sore and my skin generally felt irritated. I think a mix of stress (no way!), cleaning a lot and next to no sleep were to blame. My lips returned to normal the following week.
• On Saturday 24th September 2016 I met up with five fellow TSW warriors. We went to a place in Chelsea called Tanya's and had some of the best cake I've ever eaten (even better, it was healthy!) and we spent a very lovely afternoon together. I say it every month, but I feel incredibly lucky to be part of this community. Later that day, I moved ... yes, it was a very busy day.
• On Saturday 1st October 2016 I had a small sore patch of skin on my lips that you couldn't see but I could feel. The following day it dried up before returning to normal a few days later.
• For a while I had a tiny patch of rough skin above my left cheekbone that you couldn't see and I kept forgetting about but on Sunday 2nd October 2016 it turned into a small rash (pictured) that was gone the next day.

It looks like I have had a lot of problems with my skin this month but all the issues were minor. Even when anything happens now, I still have great skin. I only mention this stuff because I feel it's important to discuss every single blemish as I know when I was going through TSW I was curious what happened after. After feels wonderful.

Sending you all lots of love and hugs <3
Cara xxxx

Failing to capture the minor issues on my left wrist and the last knuckle on my right hand.