Cara Ward

Books. TSW. Trich. Life.

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.

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)



And so I have somehow reached 8 years since I stopped using all steroids and immunosuppressants, and oh my goodness it's been quite a ride.

I have been better nearly three times longer than I was in withdrawal, and there is not a day that goes by that I don't feel grateful that I didn't give up and kept going.

I don't know how it does it, but somehow it gets better, and the skin learns how to fend for itself again. 

I wish I could give you a better answer than to give it time, but that is the only thing I am truly sure of. 

Time heals.

Cara x

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