5 QUESTIONS WITH: Douglas Maddy (and Charlie)

It's brings me both great pleasure and sadness to be able to share another 5 QUESTIONS WITH you all. I say sadness because even after all this time, I cannot bear the thought of anyone having to go through TSW - especially a child. I am joined by Douglas Maddy, father to five-year-old Charlie who has been going through TSW since January 2015. I first came across Charlie's story earlier this year when I saw a video (here) that Douglas had put together about his son which pretty much broke my heart. It's one of the best videos I have seen of anyone going through TSW which not only shows in quite graphic detail just how hard TSW is but more than anything, it highlights how incredibly tough it is for a parent to see their child suffering so much. Douglas is passionate about spreading awareness for our forgotten condition and I couldn't be happier that he has agreed to share his son's story on my blog.

***I feel I need to add a disclaimer that some of the photos included in this post are upsetting and might cause readers distress*** 

I'll hand it over to Douglas:

1) Tell us a little bit about your son's skin journey.
October 2011 - Charlie was born. He had mild eczema as a baby.
March 2012 - Went into hospital with water infection which affected his skin. 
May 2012 till May 2013 - His skin was good, Just had an occasional little bit of eczema.

June 2013 - Since being prescribed steroids he became worse. Continued getting worse the more visits we had to the dermatologist.

February 2014 and it kept spreading June 2014.

July 2014- onwards the itching became uncontrollable, it was constant day and night. 
January 2015- stopped applying steroids. 
February 2015 - all symptoms of topical steroid withdrawal came out (burning, oozing).

February 2015 till January 2016 - Unimaginable hell that kept getting worse. 

January 2016 - 1 year into stopping steroids, skin was as bad as it got, we had our last hospital visit.
January 2016 to January 2017 - It was a very slow recovery back to health.

January 2017 - Improved dramatically, manageable.
February 2017 - continuing to heal, while raising awareness to warn and help others.

Caring for Charlie while he was experiencing the worst of TSW is truly unimaginable. 
My heart would break every hour of the day and night watching him suffer constantly as I struggled to stay awake. 

2) How did you find out about TSW?
I just spent most of 2014 learning as much as I could about skin health. I came across topical steroid addiction from the video on youtube titled: "Questions and Answers with Marvin J. Rapaport, M.D." I didn't believe it at first, but after looking at everything it was the only explanation.

3) Did you find that anything aided your son's healing?
No, nothing worked. The only reason why Charlie is better is because of the work of Dr.Rapaport and the information he has generously provided to the public. The facebook support group helped me personally, which allowed me to help Charlie. 

4) Sum up TSW in five words.
Healing happens. Just Stop Steroids. 

5) What positives, if any, have you found from your son going through withdrawal?
Everything else in life is easy, in comparison. 
Learnt a lot about diet and health.
Raising awareness for topical steroid addiction has given me a genuine philanthropic purpose to my life. 
Deep appreciation for health.
Knowing that Charlie is going to be ok, watching him laugh, just melts me, I'm so proud of him, and his bother Alfie and sister Abbie for supporting him.

Douglas' TSW Youtube Channel where he tries to upload a new video every week can be found (here) and you can join his fantastic Facebook group Topical Steroid Addiction (here).

Thank you so much for sharing your story with me <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)

Don't give up,
Cara xxxx

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And so another adventure begins...

This is a little post to simply mark another milestone. Today, I'm moving back to London and this time I think I am doing it right. Not only am I in the best place mentally but I am also moving in with my best friend and starting a new job in a week's time that I am SO excited about - plus the hours are good enough that I can still work on writing and my books in my spare time. When I last moved to London towards the end of 2015, I'd only just recovered from TSW and was thrown in at the deep end with a job that was just too intense, not giving myself any time to deal with what I had been through for the last two years.

I also realised something rather strange the other day. Last summer was a really bad time for me - not only was my anxiety at an all-time high but personally there was a lot going on in my life. I started doing a lot of thinking and I very quickly realised that how I was feeling and how I reacted to things all pointed back to my experience at secondary school. Secondary school was a place that changed who I was as a person and left me with pretty much next to no self-esteem - I became a shell of my former self. I also developed Trichotillomania and Dermatillomania and my original (non-steroid induced) eczema was so bad that I now believe it was down to all the stress I was under at school.

A year ago on Friday 8th July 2016, I decided to visit my old secondary school and write it a letter in a bid to try and find some kind of closure, which I then threw in the bin of one of my old common rooms and walked away without looking back (I wrote an Instagram post all about it *here*). Exactly one year later, I am moving to London and in that time I have not only got to the best place with my Trichotillomania and Dermatillomania but written and self-published a book about my experience, written another 100,000+ word draft of a potential novel I'm excited about, started work on a book about my TSW experience, handed in my notice to my old job, moved back home and learnt so much about myself as a person.

In the last two years of my journey I have dealt with, at times, crippling anxiety and a definite case of PTSD but I think through a mix of meeting others going through TSW, tackling issues head on instead of burying them and a lot of deep thinking, I am truly healing.

Right, my next post will be coming to you from London so bye bye beautiful countryside and hello to pollution and overcrowding ... I can't wait!
Cara xxxx

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Mental healing & the TSW documentary

Still from Preventable: Protecting our Largest Organ on Friday 23rd July 2017.

I apologise for my blog absence over the last few weeks but I think it's safe to say that life has been insane - I've been up at 5.30 a.m. commuting into London every day temping, job hunting then after work, going for interviews. In between all that I've been trying to catch up with everything else that has been neglected, along with moving madness (I move back to London in under a week!!!) but as I had an hour to spare this morning, I just knew I had to write a post that it would have been an absolute sin not to cover as it had such an impact on me and my TSW journey.

Many months ago Briana Banos, who I have featured on my blog before (here) & (here), contacted me to ask if I would like to be part of the documentary she was making about the dangers of topical steroids: Preventable: Protecting out Largest Organ. The decision to be involved was a no-brainer and so on Friday 23rd June 2017, I made the trip to Kent where filming was to take place. I was welcomed into the home of the parents of Kelly, a fellow TSW suffer, who had been hosting Briana since she arrived in the UK - Kelly and her family are simply wonderful <3. I met Briana along with Nina (here) and Laura (here), who I would be filming with and I can safely say I had the most incredible day. Nina, Laura and I filmed a segment together then after a short break, filmed separately and I would be lying if I said I didn't get emotional talking about it all. I don't know why exactly but when I spoke about my withdrawal this time, I felt like something had shifted - a weight had been taken off my shoulders, I felt a total sense of peace. I have written thousands of words on this blog, my Instagram and the internet about my TSW experience but something about saying it out loud in a situation like that - and being with two other women who had come through it and recovered fully - had a profound effect on me. There was also something rather extraordinary (and totally surreal) for me to be able to meet someone I had watched when I was suffering. If you haven't seen Nina's YouTube channel (here), she is such an inspiration and definitely kept me going on the dark days so it was quite a moment to be able to sit down next to her and simply say thank you. Nina also brought her parents along with her, who were just amazing. I left with this wonderful, warm glow and the most incredible sense that everything was ok. Truly the loveliest day with the loveliest group of people <3

Here is a teaser from our day filming for the documentary on Friday 23rd June 2017.

Clockwise from left to right: Laura, me, Kelly, Nina and Briana <3 

As if I that wasn't fabulous enough, I got the cherry on top of a rather calorific cake on Sunday 25th June 2017 when Briana hosted a TSW London meetup. I have said this many times on my blog now but to actually talk face-to-face with those who truly get it - know exactly how it feels - is something that cannot be bought and more effective than any drug on the market.

A photo from the meetup, taken on Sunday 25th June 2017.

Briana and I <3

I truly feel like last weekend healed a part of me that was taking longer than any of the physical symptoms to mend. TSW takes time but I promise you that it is time well spent - you might not understand exactly how this experience could ever be a good thing but looking back now, I am amazed that my life is fuller - richer - for the experience.

The people I have met on this journey have nothing short of amazed me. Briana is doing something as a community we should all be very proud of - AND ENTIRELY ON HER OWN. It is only a matter of time now before our forgotten condition is recognised for what it is - like topical steroids, you can only suppress the truth for so long.

So much love to my TSW family <3
Cara xxxx

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