Seven Questions for Seven years with Catherine from @life_after_tsw

This post was completely unplanned and came about by beautiful accident after a woman called Catherine left me a comment under a photo I had shared on a TSW Facebook group recently where I talked about my favourite subject ever (giving it time). She said:

"It took me 7 years to fully heal. It was the hardest road I've ever travelled. Only time healed me. It's now been 10 years since I started TSW and in some ways I forget what I went through but it doesn't take much to remember. In many ways I'm grateful for my experience and what I have learned about myself and the world of medicine."

After seeing that, I knew I had to share her story. Not only is her perspective on TSW incredible, and aligns very closely with how I felt after coming out the other side, but the fact that it took her seven years to recover. 

It seems mad to me when I say that my TSW journey *only* took 26/27 months, but when it comes to TSW, unfortunately it can take much longer than that, and sometimes I feel I am unable to offer adequate support when I can't imagine how difficult it must be to go through TSW for seven years – especially the mental toll it must take. I suffered from doubt so much in the second year, so to keep going after many years, and still believe in this process, takes a lot. No matter how strong your resolve is, over time, the reasons why you started in the first place become a distant memory and you start seeing steroids with rose tinted glasses ... Saying that, if I'd had to go through TSW for seven years, I would, for the simple reason that I knew I had no other option left. It was either a lifetime of being suppressed by medication or take a chance at a life without said medication. I know that might sound scary, but to me, it was liberating knowing that I had to keep going because steroids etc. weren't the answer and just a quick fix that had got me in this mess in the first place.

Something else that I wanted to say is that I think we can lose sight of exactly what we are asking our body to do for us during TSW. This isn't something that can be rushed. Our poor body has to learn how to fend for itself again after sometimes many years of being suppressed by powerful medication. None of us should have to go through this in the first place, but when you go through TSW, try to remember this isn't something cosmetic and instead, a total body overhaul. This isn't a medical opinion, and instead some perspective from a woman looking back on a process that gave her back her skin. 

When Catherine sent me her answers for this post, I couldn't wait to share them with you all, and I hope it gives anyone struggling some hope. Another thing to mention is that Catherine unfortunately doesn't have any photos from the thick of TSW as they were stored on a hard drive that crashed. She has found a few though that she has kindly shared with us – one taken now, after TSW (above), and a photo of her eyes during a flare in the later stages of TSW.  

She also provided a photo of her skin last year (left) after she trialled a steroid inhaler when covid first broke out as she was worried about her health. Even though her body didn't react well to the inhaler, she is totally OK now.

She has also rather excitingly just set up an Instagram account, @life_after_TSW and I can't wait to follow her life after TSW!!

With all that being said, I'll hand it over to Catherine: 

1) Tell us about yourself and your skin journey, before steroids.

My skin journey started not long after I was born. My mum noticed rough patches on my skin when I was a baby. I was prescribed hydrocortisone at a young age, somewhere between the age of 2 to 5. I had mild childhood eczema behind my knees and in the crooks of my arms and used the hydrocortisone on these areas often until I grew out of my eczema around age 16. I had a stint of 4-5 years with no eczema at all but then when I was 20 I noticed dry splits opening up on my fingers. Years later I discovered this was a very mild form of dyshydrotic eczema.

2) What medication did you use and for how long?

I was prescribed many, many tubes of hydrocortisone throughout my childhood but it was the creams I was given between age 20-24 that did the damage. I started with a stronger steroid than hydrocortisone when I went to the dr for my sore fingers. Over time I was prescribed stronger and stronger creams. Around 2 years later I was waking up with swollen eyelids and was covered in a light rash on my chest, arms and back. The creams also seemed to 'bleach' my skin because I would have white dots and areas where I had put it on. That's when I took my first round of prednisone. I was to go on another round about a year later when I felt I needed a break from my terrible skin. This was all before I found out about TSW.

3) How did you find out about TSW?

After the 2 rounds of prednisone my skin rebounded horribly again and the drs I saw had no other suggestions of how to treat me so I gave up and went to a naturopath. I was given a whole assortment of creams and medicines which didn't seem to help me but did stop me from taking any steroids. I was put on an extremely restricted diet to try and rule out allergies and intolerances. My weight fell to 47kgs and I was extremely weak. Little did I know I was going through the early stages of TSW. It wasn't until 11 months later that I discovered ITSAN'S website and saw all the photos and read all the stories that seemed to match up with mine.

4) Tell us about your skin during TSW.

The first 11 months before I found ITSAN were horrible. I didn't know what was happening to me and no dr or dermatologist could tell me either. All my blood tests came back normal. I truly thought I was dying. I had what I now know were many panic attacks. Initially my skin was bright red and burning on my face, arms and legs. Over time these areas shifted around my body. The only part of my body that went unaffected was my scalp. I was extremely itchy. My skin always felt wet and hot. I had lots of tiny pimples covering large areas that could be popped. I had lots of elephant skin on my legs, wrists, face, arms, just about everywhere. 

A photo of Catherine's skin during a flare in the later stages of TSW.

5) How did your symptoms change over your seven year withdrawal?

My symptoms were definitely at their worst in the first year. Burning, redness, extremely sore hot skin. I had the nerve pain, too. I couldn't stand up for longer than a couple of minutes that first year though I somehow completed my post graduate degree! After that I was less red looking but was still covered in rashes that were persistent, especially on my hands and face. I had long flairs that lasted months with maybe a few days grace before another flare started up again. This went on and on over the years until maybe year 5 when the flares lessened in severity. Extremely slowly the intensity reduced but it felt like taking one step forward and then two steps back. Finally my skin was mostly clear by year 6 though I would still have the occasional flare on my face. By year 7 my skin was looking great. I have however not been able to get rid of the mild dyshydrotic eczema that I started with. But this is much more manageable and doesn't come close to dealing with TSW.

6) Did you find that anything aided your healing?

Time seems to have been the only thing that has healed me. I did stay away from a lot of foods as I had an extensive blood allergy test done in about year 2 of withdrawal that showed about 20 allergens. I now know that TSW puts your whole body out of whack so I am now fine with nearly all of those foods now. I mainly ate fruits, veges, meat and grains other than wheat. Whether this helped or not I cannot say. Alcohol would make me flare, so would chocolate, though I struggled to stay away from that! For a while I was making my own hand balm from beeswax, cocoa and shea butter etc which seemed to help my sore hands. Having my fiancé and then husband with me all the way helped enormously, esp when no one else would believe me when I told them it was my prescribed steroid creams that were doing this to me.

7) What would you say to anyone going through TSW who is scared of a longer withdrawal, like you had?

I would say hang in there. This is one of those times in life where things absolutely suck. Through adversity you grow as a person. Develop your 'I don't give a f#*! attitude about the way you look. Those around you really won't care what you look like. If you know about TSW Facebook groups and ITSAN then you have a wonderful guide to help you through your journey. It was such a relief to find ITSAN in 2011. It gave me hope. Something drs and dermatologists couldn't do. They said I would have to live with terrible skin for the rest of my life.

Surround yourself with kind people. Look after your body and try your best to find the good in everyday. Every day is one step closer to healing. The journey may be long but it is so incredibly worth it!

Thank you so much Catherine <3

To anyone struggling after many years, I truly hope this can give you some hope, and to anyone struggling during TSW, no matter how long it's been, know that you're not alone and this is all temporary. 

It gets better, give it time.

Cara x

Five Questions With: Kaitlyn

I am back with another 5 QUESTIONS WITH, featuring the beautiful Kaitlyn (aka @k8loveslife on Instagram). Her story is slightly different from others I have shared in the past because whilst she openly discusses her skin struggles, I am sharing her story because her strength, positivity and spirit is so inspiring, especially when you learn of all she has been through because of steroids, especially the oral steroid Prednisone.

I have known Kaitlyn for a few years now, and very quickly fell in love with her uplifting, beautiful (and food porn-worthy) Instagram account (here). But sometimes, when people share their story with such positivity and grace, you don't realise all they have been through. After I mentioned in an Instagram story recently that I was triggered when someone had suggested using Prednisone for their mental health, Kaitlyn replied and told me things about her experience with steroids that truly shocked me. I couldn't believe everything she had been through, which was made even more heartbreaking by the fact that it all started with hydrocortisone when she was a baby. 

After fighting against Dr Sandra Lee's Super Cortisone+ last year, it made me realise just how many people had developed Topical Steroid Addiction because of hydrocortisone: a drug that is considered 'mild', and even prescribed to babies (I was one of them). Hydrocortisone is used for everything from eczema to sunburn and bug bites – and even recommended after shaving your bikini area (shudder).

I think it is important to mention that not everyone who uses steroids in their life will end up having to go through TSW, but it is something that everyone needs to know about because TSW is very real and it is not rare or something created by a bunch of steroid phobic people on the internet.

Please note that most of the photos shared in this post (apart from the photo above and the last photo) were taken in 2015 and only represent a small fraction of her journey - and were certainly not taken when she was at her worst, as you'll find out in this post. She said of the photos taken in 2015 that they are what her skin was like on an average day for many years. Like most of us, we never took photos of our skin before we found out about TSW, or at other times in our life when our skin was at its worst – but at the point these photos were taken, she couldn't work and was in and out of the hospital several times a week. 

I would also like to add a disclaimer as some of Kaitlyn's photos and experiences with her skin could potentially be a trigger.

I just wanted to add that Kaitlyn is currently using Dupixent to manage her symptoms, and whilst it's not something I'd recommend using during TSW (in my non-medical opinion), I respect her decision as it's right for her. We are all different. 

Lastly, I wanted to say that whilst I totally understand if you need to use medication like steroids again if you cannot go through TSW (trust me, I get it), or you have personal/work commitments, please be aware of the language you use when you suggest using a strong steroid like Prednisone to combat mental health. It can be very triggering to those who have had bad experiences using it. Any of these drugs we use for eczema, or to alleviate symptoms of TSW, are not designed for mental health, and were in fact the drugs that caused our mental health problems in the first place. 

With all that being said, I'll hand it over to Kaitlyn:

1) Tell us about yourself and your skin journey.

I'm a 31 year old dog mama of two, currently residing in the frozen tundra that is Alberta, Canada. I have a full time job in the Recreational Cannabis Industry as well as running my own company full time - KaitDoesIt (here). Which is essentially a business where I do the things I am great at, and passionate about - Professional cleaning, healthy custom meal prep, commission art pieces, and social media consulting and content creating (and more!). I came about all of these skills in an honest way - when you are too sick to work in public you cleverly find ways to pay your bills by using your given talents and staying behind the scenes.

My skin journey started long before I even have memory of it. I was about 3 weeks old when my rash and redness started to appear on me. By 3 months old it had covered most of my little body. Pictures were few and far between as my skin continued to flare off and on for the majority of my childhood. I must have been about 3 years old when my parents were first prescribed topical steroids to apply on me. "It might thin her skin" was the warning my parents and I received for years after that point. I used topical steroids from about that age to the age of 17 years old - at first, sparingly on 'problem' areas. By the age of 15-17 I may as well have been bathing in buckets of topical steroids (not to mention creams, Vaseline, oils and whatever else I could get my hands on). The oral steroids started when I was about 14 - at first just to get me through the bad flares. Then it just became something I was on a low dose - high dose loop of, for years. I finally stopped taking long term oral steroids when I was almost 28 years old, when I got the Okay to go on the medication I am on now.

I had tried everything over the years. Every cream, therapy, food/allergy elimination, so many medications I can barely keep track, doctors from other places, hopes and dreams - you name it, we tried it. And I say 'we' because skin disease and TSW truly IS a team event - don't try to do it alone. At one point in my journey, with my 'mysterious' skin issues, and plethora of other ailments that graciously haunt this little human body, I had 17 doctors on my team of specialists who had no idea what to do or how to keep me alive other than pumping me full of steroids to suppress my immune system. 17 specialists who 'unknowingly' just dug my hole deeper, and deeper, for years.

I've gone through so many extremes with my skin, have spent more time in the hospital than I can even fathom, and still experience PTSD from it all. I can't even go into the head trip it is to have a skin disease and TSW for most of your life. Let's just say I stay medicated. A group of nurses 'lovingly' used to refer to me as Lobster Girl because my skin was always that red. People regularly asked if I had been in a fire, or how I got a 3rd degree sunburn. I would always be itchy, scratching off the skin that wasn't already falling off. My skin would fall off in chunks from head to toe, even while slathering myself in anything I could get my hands on and wrapping my skin. I would ooze from head to toe, constantly smelling like rotten skin for years. I had cuts all over my body that my body seemed to create by itself. My neck, my ears, eyes, nose, any part of my body that was supposed to bend. My feet and ankles have permanent scarring to this day from the hell they endured. My inner eyelids and eyeballs would peel, I would literally cry tears of blood. My eyes were so bad I had been given glasses for years before an ophthalmologist told me that I was experiencing eczema inside my eyes the whole time and my cornea was actually cut up so badly, my vision was blurry because of the damage. I lost about 40 pounds when I was at my worst, on bed rest at 21, in so much pain I was barely able to move. My parents were taking care of me - wrapping my wounds, helping me bath, making sure I got some food in me, taking me to the hospital several times a week when things would get too bad to handle. My asthma was always flared, my alopecia would flare and I would lose my hair. I wasn't able to regulate my body temperature without having skin, I would shake and shiver all the time even though to the touch I was on fire. My gums and bones have degraded from years of Prednisone use, something that has definitely affected me as I have started breaking bones much too easily within the last couple years.

I have had MRSA for almost 8 years now due to contracting it in a hospital while I had no outer skin layer to protect me. For years I was COVERED in MRSA pustules. Hands, feet, face, body, vagina - literally everywhere. I remember counting 41 open pustules on my body at one time. I still test positive for MRSA, I likely will my entire life, though I am grateful to not have it actively affecting me anymore.

My skin has been mostly clear for 3 years now as I've been on Dupixent. For me it was a complete game changer and has given me a life I never thought I would be able to have. I still have slight flares, but for the most part they are easily controlled and don't last long. The years of TSW will likely always haunt me, and remind me of what I've been through. 

2) How did you find out about TSW?

I found out about TSW through Instagram, and I was late to the party. It was only about 3 years ago I came to discover it. You, Cara, were, and continue to be, so helpful. And then I found Louigiskin and finally realized I was not alone. As I emerged from the shadows with My own experience, I found an entire community of TSW sufferers, some who have become such close and wonderful friends. I was never alone, which is both comforting and also terrifying knowing that there are so many others experiencing a hell I would not wish upon my worst enemy. I unknowingly went through bouts of TSW at least a dozen times from the age of 10-25, including years of my life hospitalized and on best rest.

3) How has your experience with your skin changed you?

My experience with my skin has helped to make me empathic towards others' struggles, skin related or otherwise. I'm kind, and understanding when others need help. It helped me realize that my childhood goal of growing up one day to help others really is still my goal. But it's far from all love and light. My experiences with my skin and immune disease have also left me with PTSD and frequent bouts of anxiety. I still don't see myself the way others do, the redness, scars and peeling is still a visual that flashes before my eyes daily. I'm always on edge - I wonder if and when I will flare again, how long it will last, and if I will be capable to handle my life on my own. I wonder if I will not be able to afford the medication I'm on if I will go back to how I was. I wonder if I'll be able to survive that if that happens. My skin journey has affected every single part of my life, it genuinely has shaped who I am because it's been my whole life. I'm 31 and just figuring out who I am and what I am supposed to do in life, because I've never had the chance to focus on that before. 

4) Sum up your skin journey in five words.

Isolating/traumatizing/all-consuming/hopeless/healing (because it does finally come).

5) How would you like the treatment of eczema (and TSW) to change?

I believe for the treatment of Eczema to change we need to keep fighting for the realization that TSW is VERY MUCH a thing. That topical steroids do not just possibly 'cause skin to thin', and that topical and oral steroids can cause the most horrific and long term experience you could possibly imagine. My life was stolen from me, for years. And I am one of SO MANY. The numbers are the proof, and we as a community need to fight back to try to never have anyone go through what we've all endured. Doctors should not be allowed to prescribe topical steroids lightly, and there should definitely not be topical steroids available over the counter or insanely added to 'beauty' products. Eczema, TSW and skin disease need to be taken so much more seriously.

To follow Kaitlyn's beautiful account, click (here). 

Thank you so much Kaitlyn <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)
Emma (here)
Zip (here)
Imogen (here)

Hayley (here)

5 QUESTIONS WITH: Hayley

I am so excited to be back with another 5 QUESTIONS WITH, and this time it is with the lovely Hayley from the Instagram account, @tswdailywithhayley. I have been Instagram friends with Hayley since early 2019 when she began her journey through TSW. She has now made a full recovery and I have been amazed by her kindness and positive attitude along the way - it's so inspiring.

With that being said, I'll hand it over to Hayley:

1) Tell us a little bit about yourself and your skin journey.
My name is Hayley and I am 23! I am studying speech pathology, I love to travel and I live in Australia. I have had eczema since I was a child. My skin was at its worst when I was about 5 years old, when I had a bout of chicken pox that sent my eczema into a massive flare. Mum took me to the doctor, who prescribed very mild steroid cream for a short period of time. That was the only time I was exposed to steroids during my childhood. Around that time, Mum also took me to a naturopath who helped us manage my skin naturally through lifestyle and diet changes. For me, avoiding environmental and dietary triggers, and maintaining optimal nutrition was an effective way to manage my skin – and that’s how I did it for the next 15 years of my life. When I turned 20, I experienced a high amount of stress and my eczema flared up. At that point, I started using mild over-the-counter steroid cream on my hands, but eventually went to the doctor for relief because it wasn’t improving. I was prescribed a highly potent steroid cream, to be used for two weeks at a time. This worked for a while, but after each two-week round of using the cream, my skin got worse. I eventually had to go back to the doctor. I was then told to use it as often as I needed. The cream was effective in relieving my eczema – but only on the day I applied it. I noticed that my skin would erupt a day or two after I applied the cream, and each eruption was worse, and spread even further across my body, to places I’d never had eczema previously. I began to try other methods to clear my skin – clean diet, celery juice, naturopathy, nothing worked, and I was getting worse. I was devastated. Eczema had always been a part of me, but it never held me back from anything; I’d always been able to play sport, swim, travel, and wash my hands and body normally. My skin was out of control and I felt hopeless. Eventually I found my answer through Instagram. When I was searching for other people managing their eczema naturally, I found Cara Ward and Louise King, who had shared their story of topical steroid withdrawal. The symptoms they described were exactly the same as mine. I knew this was what was happening with me too. I gave up all steroids on February 17th, 2019 and what followed was about 11 months of an intense withdrawal.

Hayley during TSW

2) How did you find out about TSW?
When I was looking for ways to manage what I thought was severe eczema, I noticed some Instagram profiles that were describing “topical steroid withdrawal”. At first, I didn’t actually think I was going through tsw, like Cara and Louise had/were. I respected them and empathised with them, but I thought since I’d only used steroids as the doctor had instructed for a few months (eight, to be exact), surely, I wouldn’t have to go through that…turns out that’s exactly how topical steroid addiction starts – by following medical advice. There was a day when I had to go back to the doctor to get a medical note (to take time off university and work; something I’d never had to do for eczema before) and described my worsening skin to them. They offered more steroid cream, oral steroids and mentioned that steroid injections might be a course of action in the future. It was ridiculous. For 20 years of my life, I had never relied on medication. I knew I had a choice to make. I would have to live taking steroids for the rest of my life, or I would have to suffer for a while, hoping that I would get better. It dawned on me that whether I liked it or not, and despite the short length of usage, I had to go through a withdrawal too. As much as I couldn’t believe it, I felt sure I’d found the answer. I’d seen that people like Cara had made it through and I would too.

3) Did you find that anything aided your healing?
Nothing was miraculous. I still went to a naturopath while I was going through tsw. I don’t think this was a cure, but I think it was a supportive of my nutrition, mental health and helped reduce inflammation within my body while my skin went through withdrawal. In my first month of withdrawal, I found long baths comfortable, but eventually I found moisturiser withdrawal more helpful – I stopped showering, bathing an applying moisturiser in the second or third month of withdrawal. At first, I felt tight, sore and gross, but after a couple of weeks I started to feel more comfortable. My mum and sister washed my hair once every few weeks, and I cleaned my fingers, armpits and other areas that needed it with antibacterial wipes in place of hand washing and showering (sounds gross, but it was the way I managed for about 5 months). Again, I can’t say that moisturiser withdrawal actually helped, or if it coincided with healing that would have happened anyway. After doing moisturiser withdrawal for 4-5 months, I thought a few products helped me continue healing; hyaluronic acid, jojoba oil, paw paw ointment. I don’t claim that these products were miraculous, but they made me feel more comfortable as I continued to heal and could tolerate more products. I found the sun highly irritating and made my skin more oozy, so I stayed away from it and covered up with hats, scarves and long sleeves if I went out.

The most helpful thing for my withdrawal was letting my friends and family know what was happening, accepting that I had to take time to rest, and allowing myself to be what the world would describe as unproductive. I stayed home as much as I could (quit work, and withdrew from university), and rested all day every day for about 5 months. I know this is not possible for everyone. I still lived at home with my parents during tsw, and they were absolutely amazing to me. I am ever grateful. It was challenging to accept support at times, but it was the best thing to do. Accepting the support of friends and family can be strange when you’re used to being independent, but it’s definitely a good thing during tsw, if you can. I watched endless hours of Netflix, listened to meditations, sat in the same room as my family at night (even if I couldn’t move), and spent a lot of hours on Instagram talking to others going through tsw. Honestly, those were the only things I could physically and mentally handle; I didn’t have much of a choice. Instagram was like therapy for me – I found so much hope reading the stories of others. I am in awe of the people in the tsw community. There were several ladies going through tsw at the same time as me, some are now healed, some are still in the process, but going through tough days knowing I wasn’t alone was really special.

Hayley now!

4) Sum up TSW in five words.

Painful. 

Burning. 

Paralysing. 

Renewing. 

Releasing.

5) What positives, if any, have you found from going through TSW?
I feel a lot more resilient. I don’t think I realised it before, but I was quite a tense perfectionist prior to tsw. If I couldn’t do something perfectly, I didn’t want to do it. I would often give up on things if it didn’t go exactly to plan. Having absolutely no control over my skin was such an uncomfortable thing, physically and mentally during tsw. My skin literally fell off all over the place and I left a trail of flakes behind me that drove me mad. I couldn’t make plans because I didn’t know how long it would take to heal. I had no control and I had to let it be. I had to be kind to myself. There were some days when I thought I would die, and some when I wanted to. Being that down is definitely not fun, but I learned to get through the days. I learned to lean on others, and on my faith. I learned to appreciate the small things, like reading a book in front of a fire, or a cup of tea with mum. I was blessed by friends who visited me, saw me and loved me during tsw. It still makes me emotional to think that my friends and family actually do love me for me, not my looks. It’s such a unique experience to go through, and I’m grateful to have the friends I do, and I now love them at a deeper level than I thought possible. While I was in tsw, I read about other people’s resilience in life – I read The Diary of Anne Frank, The Whitest Flower (about the Irish Potato Famine), and other historical novels. I also read about people who have other skin conditions like burns, Harlequin Icthyosis, and others. I thought, if they can face that, I could face this. I was going to heal, and I held onto that. Gratitude grew. Ambition diminished. I now have a lot less ambition, and I don’t think that is a bad thing at all. I am still driven, but I know that things will happen as they’re meant to and I can’t control most things. It does cross my mind, especially as I complete my final year of university, that “I can do this. It doesn’t have to be perfect. I’ve been through tsw. I can get through this day.” I’m grateful for the resilience that has grown in me.

Life and health is a gift. People really do suffer in this life. I can now, like I was never able to before, in a small way relate to other humans who are suffering. Becoming acquainted with suffering and realising that I am mortal has been a blessing. It has brought me deeper into hope as a Christian. Deeper into trusting that there is a plan for restoration for all people. Our story is not over while we’re alive, and especially not over because Christ is alive. I hope and pray that anyone going through tsw finds hope in a future that is bright, but that there is also strength of today.

1 Peter 2:24-25 (Passion Translation)

24 He himself carried our sins in his body on the cross so that we would be dead to sin and live for righteousness. Our instant healing flowed from his wounding. 25 You were like sheep that continually wandered away, but now you have returned to the true Shepherd of your lives—the kind Guardian who lovingly watches over your souls.

To follow Hayley's inspiring Instagram account, click (here).

Thank you so much Hayley  <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)
Emma (here)
Zip (here)
Imogen (here)

5 QUESTIONS WITH: Imogen

In the midst of all this anxiety and fear our lovely world is currently experiencing, I thought I'd share something positive with a return to my 5 QUESTIONS WITH series, offering a little reminder that things do get better <3

Today, I am excited to bring you Imogen's story. Imogen and I have been friends on Instagram since November 2016 when she began posting about her battle with TSW (her fantastic account can be found *here*). I followed her journey through the terrible symptoms of withdrawal to her eventual recovery around eighteen months later! Now, her skin is absolutely beautiful and I couldn't be happier for her.

Without further ado, I'll hand it over to Imogen:

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

Imogen during withdrawal (2017)

I suffered from extreme eczema as a baby on my body and face. I recall seeing pictures of me as an infant with horrendously raw cheeks and my family all reminiscing about how awful it was. My poor mum was at her wits end and would cover me in emollient creams, tubular bandages and occasionally topical steroid creams although this was rarely. I was very allergic and reactive to environmental factors as a child as well as being mildly asthmatic. I remember not being able to go near an animal because they would cause a flare. Every winter, every summer and every family holiday abroad would bring on a flare of some kind and I would have to lather myself with creams to try to stop myself tearing at my skin. This went on for most of my childhood, however teenage years brought some relief and it seemed I had ‘grown out’ of my severe allergies and eczema although certain environments (dust, horsehair) would still induce a flare up. At the age of 19, I moved out of my family home while at the same time securing a job on a farm. Almost instantly, my eczema came back, mostly on my legs and arms. The next two years was a whirlwind of changing jobs and using steroid creams prescribed until I was absolutely covered in red, burning discoid eczema (something I now believe may have actually been the start of TSW). I saw dermatologists and GPs who eventually gave me Fucidin, a steroid-antibiotic mix. I was only meant to use this cream for ten days on my face, I used it for over 365 days. Every time I used it, I would have some relief however the next day, the weeping, raw skin would be back with a vengeance. The next step according to the doctors was to give me prednisone. I wholeheartedly did not want to take it and so I was stuck in limbo until I found ITSAN. I then went through TSW from October 2016 up until around April 2018. I now consider myself to be fully healed and I no long suffer from eczema. My allergies are virtually non-existent, and I have even been able to regularly horse ride in the time since my TSW. Before TSW, being anywhere near a horse would have caused a severe flare up and a tight wheezy chest. This leads me to believe that steroid creams were making my allergies and asthma worse…. All-in-all, there is life after TSW!

During TSW.

2) How did you find out about TSW?
I actually had a friend who had been through TSW the year before. I didn’t know much about it at the time she was going through it but when she found out I was relying so heavily on topical steroids, she pointed me in the direction of the ITSAN website and explained to me what could be going on. At first, I was terrified reading about other people’s experiences and hearing all their stories of TSW. How could someone put their body through this, they must be crazy right? The question that kept popping into my mind was “Can I really do this?”. However, I knew these steroid creams were poisoning me and the only options left were to stop using them or go down the route of stronger steroid medications. Something had to change and knowing that other people had gone through TSW before me and were going through it at the same time, gave me the encouragement that I needed to throw away the steroid creams. I’ve never been more certain of a right decision. That moment was life-changing.

3) Did you find that anything aided your healing?

Now I’m going to use every TSW-ers most hated phrase but, time is the best healer. It takes a lot of patience, but you have to trust your body knows how to heal itself. Having said this, there are things you can do to help it along. I found that for me, the biggest turning point was when I moved back home. I was suddenly in a much cleaner environment; I was able to eat healthier and be completely focused on myself and my healing. Less stress, more comfort. I would apply apple cider vinegar diluted in water twice a day to anywhere raw and oozing. I would also bathe in Milton bleach diluted baths three times a week. These were painful but did reduce the inflammation. Mentally, I found that giving into the pain and crying helped. It was a release for me, and it gave me an indicator of when I needed to stop for a minute and self-comfort. Connecting with others through Instagram was a big relief for those moments of anxiety and also using Instagram as a photo diary was a great way to track my healing as well as sharing experiences with fellow TSW warriors.

During TSW.

4) Sum up TSW in five words.
Exhausting. Raw. Shocking. Brave. Immense.

Imogen now!

5) What positives, if any, have you found from going through TSW?
No matter how hard this TSW has been, there are certainly some positives that have come from it. I have a renewed sense of self worth and will never take my health, mental or physical, for granted again. I feel a sense of connection with my body and have learnt to listen to it if something doesn’t feel right. All the knowledge I obtained about my skin and the way my body heals, I can now use to help others going through something similar which is very rewarding. This journey has inspired me to help others and I’m now studying at university to become a dietitian to helps others understand the importance of healing their bodies through other means, not just medications. Above all, it made me realise my own strength and determination. I feel as though I’ve been through hell and come out with a fire inside that wasn’t there before. I now also don't have eczema at all since going through 18 -24 months of TSW and all of my allergies have cleared! 

To follow Imogen's very inspiring Instagram account, click (here).

Thank you so much Imogen  <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)
Emma (here)
Zip (here)

5 QUESTIONS WITH: Zip from The Wulf Runner

I am back with another 5 QUESTIONS WITH and this time I am welcoming to my blog Zip from the very inspirational Instagram account The Wulf Runner (here). I have known Zip for well over three years - first on Instagram, then in person - and now I feel lucky enough to call him a friend. The loveliest thing about this process is the friends you don't realise you will make. Zip went through withdrawal in 2015 after using topical steroids for 38 years. His transformation is just amazing and I am so excited to be able to have him on my blog. Zip also writes rather beautiful poetry under the Instagram account The Ballad Of The Wulf (here), but just a little word of warning, some of it might make you blush ... and on that note, I'll hand it over to Zip:

1) Tell us a little bit about yourself and your skin journey.
I've had what I believed was eczema for most of my life - as far back as I can remember (my mother believes I was around 4 or 5) and wondering why my skin couldn't be normal like other peoples. I remember the never ending cycle of visits to the doctor, prescriptions, creams, emollients, bath oils, wet wraps and the hospital stays. I scratched constantly - sometimes because of itchiness and a lot through habit. I also remember the anxiety about how I looked and what it meant for my interactions and relationships with other people and how it impacted school, university and working life.

Zip during withdrawal.

2) How did you find out about TSW?
I'd been using topical steroids for almost 38 years and I was worried about side effects - particularly the hypo pigmentation and ease at which my skin was scarring. I searched the internet and came across pictures of someone in Topical Steroid Withdrawal and confused this for side effects whilst still being on topical steroids. It wasn't until a year later that I searched more thoroughly and came across the ITSAN website. I remember the overwhelming relief that came from reading story after story of people experiencing the same symptoms as me and finally an understanding about why my skin flared everytime I tried to stop using the topical steroids. It made me realise that I had been experiencing the symptoms of topical steroid withdrawal for a long time - at least 20 years or so.

3) Did you find that anything aided your healing?

In the end, I think my body needed time and also I needed to ensure I rested, ate well, exercised and did things that were good for my mental and emotional wellbeing. I believe that when your body has become dependent on topical steroids that it has stopped doing things that it should be doing such as the adrenal gland producing its own cortisol (anti inflammatory hormones) and needs to recover.   That to me was the key. I did other things along the way to make myself comfortable - Epsom Salt Baths when I was oozing a lot, antibiotics for the skin infections that I had when the skin was fragile, moisturiser withdrawal but in general make yourself as comfortable as you can and try to do the things you care about with the people you care about.

4) Sum up TSW in five words.
Preventable. Devastating. Isolating. Defining. Metamorphosis and I know this is cheating but Temporary!

Zip now!

5) What positives, if any, have you found from going through TSW?
I have learnt so much about my body and my mind both mentally and emotionally and feel so much more comfortable in "my own skin" literally.  I probably have more scars now (thanks to habitual scratching when my skin was very fragile) but zero anxiety about how I look so that I'm able to present the real, unfiltered me to the world. I've also realised life is too short and have been getting back to how I want my life to be. I have also found my faith in humanity is stronger than ever - a big shout out to the TSW community - you guys are so amazing and supportive and I could not have done this withdrawal without you! Big Love x 

To follow Zip's TSW Instagram account, click here and for his fabulous poetry, click here.

Thank you so much Zip <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)
Emma (here)

5 QUESTIONS WITH: TSW Emma

I am very excited to be able to share another 5 QUESTIONS WITH you all today. The loveliest thing about our community is being able to meet others who totally get it - all of it - and I have had the pleasure of meeting my next guest to the blog who runs the very inspirational Instagram account, TSW Emma (here). Even more exciting, back in late 2017, I took part in a documentary Emma is currently working on titled, The Prescribed Addiction, which will be another much-needed documentary on our condition that I've also blogged about (here). When we first met in 2017, Emma was still going through TSW but today, she is out the other side and living life to the fullest. Her skin is absolutely beautiful and I just had to interview her on my blog. I also wanted to find out more about the route she took to get better which absolutely fascinates me. Taking immunosuppressants through TSW is a very controversial subject within our community and whilst I would not use them myself, I am always interested to hear about anything that could potentially help someone through withdrawal. I think I will leave it to Emma to explain the rest:

1) Tell us a little bit about yourself and your skin journey.
My name is Emma and I’m 28. My eczema started as a baby with a dairy allergy and as a child I remember little red patches on my inner elbows. Whenever the patches got out of hand, I would apply a bit of topical steroid cream to calm the eczema down. It was frustrating but never too severe.

Emma's skin during withdrawal.

In my early 20s it got worse and became harder to sleep, swim, shower or sweat without feeling discomfort. Eventually I saw a dermatologist and after a few topical steroid prescriptions (and one round of orals), I was given the immunosuppressant cyclosporine. It gave me the clearest skin of my life that far, but it comes with scary risks and I wasn't allowed to stay on it for a long time. 

For about two months after coming off cyclosporine I used topical steroids again. I soon began to notice large flashes of red on my arms and this was when I found out about TSW.

I didn’t go the ‘all natural’ route for TSW. I was adamant that the creams were the problem, but I still felt an obligation to comply with the doctor’s suggestions and tried to find a compromise, one that would also mean I was able to continue working throughout the process.

I went on to methotrexate in September 2017. I still don’t know if it worked or not; it can take up to 12 weeks to kick in, but I didn’t have clear skin for about a year. Maybe it made my TSW less severe, but I’ll never really know.

I tapered off the methotrexate over the course of 18 months. I have now been off it for nearly 6 months and it has been two years since I used topical steroids. I still have slightly sensitive skin, but I don’t have a single patch of eczema left. The freedom is incredible!

2) How did you find out about TSW?
After coming off cyclosporine and returning to regular use of topical steroids, I noticed my eczema spreading. I was getting these hot flashes of red on my forearms – like I was sunburnt – and my face was flaking, I had these tiny blisters on my skin and my eyes were always sore when I woke up. These were new symptoms that looked so different from the traditional eczema I had been used to, and my steroid creams weren’t calming the areas that they had in the past.

Emma's skin now!

I spoke to my dermatologist about it. He said I needed to moisturise as many times a day as possible and use the topical steroids all over my body, including my face. I remember feeling so defeated when he said that I would have this condition for my entire life and it just needed different levels of management at any given time, according to its severity.

So I took the prescription, but it didn’t feel right. Since I was a child I had it ingrained into me that topical steroids were for 2 weeks usage only and certainly not for the face.

When I got home, I took to Google and asked ‘why does my eczema look like sunburn?’ I instantly found ITSAN and blogs about TSW.

I’m a bit of a sceptic, so I don’t know why I believed what I read online when it was contrary to the advice of my dermatologist, but it just seemed to make so much sense to me, and I ticked all the boxes for the symptoms listed. So without giving it too much thought (please DO think it through!) I decided to give up the creams that same week.

3) Did you find that anything aided your healing?

I tried it all! I must’ve spent hundreds on stuff for my skin that didn’t really help.

For comfort, I took Dead Sea salt baths every night. They made life more bearable and enabled me to go to work the next day, because they softened my skin (which at times was really hard to move) and kept all the wounds clean. After the bath I used Epaderm moisturiser, which was the only one that wouldn’t aggravate my skin.

Incredible transformation!

Clothing wise, I found some soft cotton long sleeved tops and rotated them for sleeping in. I wore fingerless gloves when I was out and about and used old cotton t-shirts as scarves to comfort my neck. I wore light grey to work, as it wouldn’t show the flakes in the same way black does, or the cuts in the way white does.

I had a LOT of laundry during TSW, because you can’t wear something for long without feeling like your skin is all over it. I switched to a laundry liquid that wasn't as harsh as the mainstream supermarket brands.

I had an ice pack for my eyes in the morning, which helped me to open them when they were locked shut. Towards the end I also got acrylic nails, which really helped break the itch-scratch cycle for me, because I wasn’t able to do so much damage. I think this really accelerated my healing.

Medically, there were also a few things going on. I was on methotrexate and as I said, I am not sure whether that made my symptoms less severe. Other than that, Nizoral, which is an anti-fungal shampoo, really helped with my scalp.

I also saw a naturopath, which was an interesting experience, but in retrospect offered me help as a sort of talking therapy rather than anything more physical.

Lastly, I never truly let myself believe that TSW would take as long as it did for other people. While that might sound naïve, I think it helped me to remain positive and cling to as normal a life as possible.

4) Sum up TSW in five words.
Debilitating, unpredictable, isolating, grounding, freeing.

5) What positives, if any, have you found from going through TSW?
TSW is pretty awful when you’re going through it, but it’s so amazing because there is light at the end of the tunnel. Most people who suffer with chronic illness don’t have that chance of complete recovery. So we’re lucky in that sense.

I would say I am more empathetic now too. We genuinely don’t know what people are going through or why they are suffering – and it is not their fault if they are. I think I now have a better understanding of that.

My life is better now than before I went through TSW. I take better care of my body and I notice more when I don’t. I guess it taught me to really listen to what my body needs to function well, whether that be nutrition, the products I use or the environments I find myself in.

Most importantly, TSW brought me closer to the right people. The people who stick by you when your condition is largely unrecognised by the medical community, when your face is falling off, when you can’t look at yourself in the mirror – never mind look someone in the eye, when you’re passing on at least 50% of social events… Those people are the best. 

And the TSW online community is such a source of inspiration and courage, so it has been incredible to meet some of them in person as well as via social media. 

To follow Emma's fabulous Instagram account, click here.

Thank you so much Emma <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)

5 QUESTIONS WITH: Brittany Hallberg

Today marks the return of an old favourite for me with a brand new series of 5 QUESTIONS WITH! I loved working on these posts so I'm beyond excited to be able to bring them back for you all, and I am kicking them off with the beautiful Brittany Hallberg from the Instagram account Health & Heart (here). I have been following Brittany's journey through TSW since 2017 and earlier this year I was over the moon when a photo popped up on my feed showing that she was doing so well. She looks absolutely amazing and is such a positive influence within our community and if you are suffering, I couldn't recommend her account more. I'll hand it over to Brittany:

Brittany during withdrawal.

1) Tell us a little bit about yourself and your skin journey.
My name is Brittany and I am 27 years old.  I grew up in the United States and am currently residing in Virginia with my wonderful husband and daughter. I have had mild eczema since I was a baby (mainly on my arms and behind my knees), but my mom was always very wary of steroids so I never actually used them until high school, which is where my life started to take a turn for the worst. I started with mild steroid creams which I would use here and there. Then over the course of 10 years, my eczema started to worsen, spread, and burn. I also started becoming very allergic to everything in the environment and had chronic hives all the time. I knew that I had to find an answer, so of course the doctors recommended stronger steroids and even rounds of oral prednisone. I would leave the doctors feeling hopeful, thinking that a stronger steroid would fix my problems. I even went on allergy shots to try and reverse my environmental allergies. One day after receiving my allergy shot my organs started shutting down, my blood pressure was through the roof and my heart was beating out of control. I ended up in the emergency room for 3 days and the doctors could not figure out what was wrong so they kept pumping me with strong steroids. This event occurred over and over for a matter of 3 months. We went to over 40 doctors, traveled to the Mayo Clinic to run every test in the book, and yet every answer that I would get regarding my health was "I'm so sorry, I have no idea why your body is acting this way". I was terrified, feeling like death was just around the bend. Finally, a homeopathic doctor explained to me how steroids have such a huge effect on your adrenal glands and that I needed a year of rest to heal all of the trauma from the oral steroids and allergy shots. However, at the time I was still using the steroid creams because I thought "it's just a cream, it's fine".  Then *surprise* I got pregnant with my first child and I decided to stop all medicines for the sake of my child. I ditched the steroid creams and that's when the dreaded TSW began (as if I hadn't been through enough already....sigh....). I started my TSW journey in April of 2017 and have not touched steroids or immunosuppressants since. Going through TSW and pregnancy at the same time was incredibly traumatizing but the pregnancy is what kept me going, knowing that I had to do this for my family. The first year was a nightmare, with many setbacks and tears. I had to quit my job, practically lived in the bath tub, and had a full time care taker because my hands were so compromised. When I delivered my baby things started moving forward, and after the first year life slowwwwwly started getting better. I am now over 2 years tsw and can function normally and enjoy spending time with my family, traveling, and am very involved in my church. I still have a few areas that give me trouble but it is nothing like it used to be. This experience has taught me SO much and I am so thankful for the little things in life that we take for granted everyday

2) How did you find out about TSW?
I found out about TSW through a youtube video I saw online which then led me to ITSAN. When I read the symptoms I knew in my heart that that was the answer. Not going to lie, my first thought was "those people are hardcore, it can't be that bad being off of the steroids", and boy was I wrong. It was much worse then I could have imagined.  A short time later I found the TSW Facebook group and got connected to someone in my area that was already further along in the journey.

3) Did you find that anything aided your healing?

Brittany now!

TSW is so different for each person and every person will find relief in different ways. For me, I feel like I've tried it all. In the beginning the bath was the only thing that would comfort and calm me down (which I do think it is better to dry the skin out if possible but for me I just could not do it at the time). During pregnancy I was not able to use a lot of medicine but I did find vicopaste bandages, tubigrip bandages, benedryl, zinc, and dss baths to be a lifesaver for me.  After pregnancy ibuprofen helped a lot if I was very oozy and inflamed and then I also went on an herb treatment that was very helpful. I've tried many diets and supplements but have not found much of a difference that route. About 18 months in I went on low dose naltrexone (which boosts your endorphins) and that was a game changer for me! For infections I would use tee tree oil and also high dose vitamin C. I also tested positive for the MTHFR gene mutation in which my body does not detox very well so I have also made changes in that area to help support my body in getting rid of toxins. Overall the main healer has been time, but all of these items aided in giving me relief and hope in the process.

4) Sum up TSW in five words.
Perseverance, life-changing, TIME, hope, healing.

5) What positives, if any, have you found from going through TSW?
This process has been extremely tough and traumatizing, yet I am extremely thankful for all that I have learned in the process. I find myself more confident in who I am, not as worried about my outward appearance, and more focused on what's inside. I have also met so many amazing friends who I will cherish for the rest of my life. This experience has motivated me to make healthier lifestyle changes, do more research, and spread awareness to people who are not aware of the dangers of steroids.

To follow Britt's TSW Instagram account, click here and for her fabulous health and wellness account, click here.

Thank you so much Brittany <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)