1 year

(and a bit! - i meant to post this over a week ago, oops!)

So January 10 2015 marked 1 YEAR OFF TOPICAL STEROID CREAMS!
I know..I can't believe it either. I know it gets said a lot but when I started this journey, I read blog posts like this one SO enviously, I just couldnt imagine getting here, but I'm so glad I did and I don't regret any of it.
There isn't really much to report photo wise, my skin has been near-perfect for months, I actually just started to get a little flare on my worst bits (my torso and neck) but it's been nothing like what it used to. I am still on ciclosporin though so I guess we can see how it goes once I aren't anymore.
It's also worth noting that I've only been off ALL steroids for 10 months (I was on a 2 month course of pred after 1 week of TSW) so maybe that's why I haven't had my dreaded anniversary flare yet.
I've been SO terrible at updating this blog, but to be honest you can just take that as a testiment of how well I have been doing, it's nice to not obsess over facebook groups and blogs, life is normal and pretty great :)

So for those of you still fighting the good fight, I hope you're pushing on - can I call myself a vet yet?! Haha. And those of you just starting out...PLEASE don't be discouraged by this post, by the length of time it takes because it does get easier, and time just flies!

Lots of love, and thank you to every single person that's been there for me in the past year, it's been difficult but so so worth it :)
S x

The light peaks through...

Just something I came across today that I wanted to share, I think this is so beautiful

I'm thankful that the light is peaking in through the darkness for me skin-wise right now. I hope a lot of you can say the same x

TSW Month 7, Photo Update

(9 months off Topical Steroids, 7 months off all steroids)

So I thought it was about time I finally posted a photo update! I got back from holiday in July and showed you all how great my skin was thanks to some sea and sunshine - unfortunately what followed that was my longest flare to date. I'll post the photos of my flare and then I'll post the photos I took today. Most of the worst photos from the flare were taken around 2 weeks ago. I finally started to get a break a few days ago and I am REALLY enjoying it :)

Since my flares are MAINLY localised on my upper body thats what I've included photos of. My legs have been mostly clear since around week 6 TSW (I'm going to include a comparison of this at the end too) My arms didnt look too different to be hoenst during this time it was mostly my back and torso that i suffered with.

Less chat, more photos!

During the flare

Its kind of annoying that the camera can't seem to capture just how much PAIN and discomfort I was in. The skin was so raw and sticky, I could hardly get dressed in the morning.

BREAK! :)

Comparisons

So there we go! Super happy with my healing at the minute, that was one of the worst flares I've suffered and it really got me down. 

Also my legs are literally so smooth right now, theyve been clear for a while now but they are literally perfect at the moment. Here's a comparison of before I started TSW and now:

Healing happens. I know it seems crazy and unlikely and horrible but we just have to stay strong and keep smiling.

Lots of love.

S x

ITSAN Forum Anniversary!

Very soon, the ITSAN forum will be 1 year old, that's almost a year of the most helpful and life changing advice available on the internet for skin sufferers.

Here's a link to a beautifully written blog post by inspirational TSW veteran Louise (CLICK) who has put it much better than I could!

If you're new to TSW or haven't had chance to look at the ITSAN website or forum just yet please take the time to do so today! It really is a wealth of information and it has changed mine and many others' lives for the better.

Skin update coming soon,

S x

Warrior

I've been really getting into yoga lately. My skin is okay, it stings a lot when I sweat but I feel like the exercise is good for me. Yoga's particularly good because it's not too strenuous, the Sun Salutations mean my heart gets racing but it's not too excessive to make me feel like I'm gonna pass out!

It also helps that I've joined a lovely yoga school called White Wolf Yoga which is based in a great venue just on the outskirts of the city that has a rooftop terrace. Yoga on the roof with a cityscape sunset setting, I can't argue with that!

Anyway, I don't know how many of you are familiar with yoga but I'm sure you'll have heard of the Warrior Pose:

It's a great pose and I always spare a thought for all the TSW warriors whenever I take it. I know I've talked about this before but I really can't put across enough how amazing everyone in the community is, we're such a strong, supportive group and I'm proud of us all!

If anyone fancies releasing their inner warrior here's how:

 Keep on keeping on warriors x

Rock, Taper, Scissors

So the day is finally here..I'm starting to taper off ciclosporine!
It's really scary but really exciting. The derm was a bit reluctant as I still have some signs of stubborn eczema and my bloods are great with no sign of any crazy side effects or anything. But I want to start making the change while I can. I'd much rather start to taper slowly while I'm in a good position to do so than have to stop abruptly for whatever reason. I've been on ciclo for 6 months now and on my maximum dose for 4 of those months which is enough.
I've reduced from 300mg daily to 250mg daily - not a huge jump but just the fact I am starting to taper makes me happy :)
Hopefully I won't see too many crazy flares and I can continue tapering. I want to be totally off ciclo within the year if possible.

In other news my package from the Home Apothecary arrived today (see my second-to-previous post for more info) and I couldn't be more excited! The parcel itself just smelled amazing and I can't wait to have a long salt bath and cover myself in yummy smelling all-natural balm!

I guess today is one of the good days.
S x

Allopath...

A great little video, credit to Corinna Lee from one of the great TSW Facebook groups I'm a member of.
Sums up the medical community brilliantly I feel!

Day 188 photo update

As promised here's a photo update! My skin is doing so well now, couldn't be happier, so smooth. I look a bit weird, keep stroking my skin in public!

Here are some before and after photos, most of the before photos were taken around 3 weeks ago. It's worth noting that I'm still on ciclo, but I was when I had these flares too so I think there must be some natural healing going on too!

(Bottom left taken today)

(Bumps on the left, couldn't even see my tattoo my skin was so bumpy and elephant-like! Right is today)

(My neck and décolletage are two of my biggest problems,  they're so smooth right now! Right was taken today)

So yeah I'm super happy with the way things are going. I have a derm appointment a week on Monday and I'm going to discuss reducing my ciclo-finally! My flare 3 weeks ago was one of my worst but it was worth it, as it always is.

I hope everyone's doing well, it's so hard to push through sometimes when you feel like you'll be in a flare forever but I've got faith that we will heal, keep on keeping on :) x

The Home Apothecary

So thought I would make a post to say that i have FINALLY made my first order from the cutest little store The Home Apothecary.

I've been in touch with the store owner - who is the sweetest by the way! - since near the beginning of my journey with TSW and have wanted to order for so long, and I finally made my first order today. For those of you who aren't familiar with The Home Apothecary and her beautiful son Isaiah's TSW journey please do have a little look through their blog - Isaiah Quinn

I've ordered the Lemongrass, Grass Fed Tallow and Boo Boo balms, heard amazing things about these handmade totally natural products and I'm super excited for them to arrive. My skin has been doing really really well at the minute, some lovely smooth areas and just a few stubborn areas I want to work on and I think the balms will be perfect for that. I have these weird little bumpy bits that I believe are common in TSW that I really want to get rid of before I get another crazy flare and I've heard the lemongrass can be great for this as well as helping to fight staph infections.

I'll keep everyone updated and if you have a chance go check out The Home Apothecary's store, particularly if you live in the US, I live in the UK so I'm off to harass my postman.

Happy healing everyone x

ps, i plan on doing a photo update in the next few days!

From pharmacy to dustbin

Only one destination for this bad boy and that is the bin, total toxic rubbish!

Had a derm appointment and told him I'm happy with my progress on ciclo and he says he is happy too but why don't I try some of this too?! Couldn't be bothered to argue so here it is in my bag of Meds!

So glad to have people who know what they're talking about who I've met on this journey because I know not to use this nasty stuff

Good news is I have 2 more months at least on ciclo :) which means hopefully my skin won't be out of control for my holiday in Ibiza in 4 weeks!

Hope you're all well x