Day 78/Day 19

78 days off TS, 19 off all steroids (inc. orals)

Just a photo update today. Flared up a bit last week and it's healed nicely, I'm having a little mini break (still v dry and nowhere near 100% but much more bearable).. they never last more than a few days but those are the best few days. 

Wrist 26/03, 27/03, 31/03

EDIT: wrist 03/04 really happy with how it's healing :)

(/end of edit 03/04)

Left arm 26/03, 27/03, 31/03

Even though I hate these flares I am encouraged by the fact that they pass really quickly, at the minute id say I'm passing through 1 cycle a week, which is pretty fast I think.

 

Can't wait to reach the 3 month mark 

S x

Feelin' Purple

So today I post this song because it's appropriate (and also because it's great!)...I'm definitely feeling (and looking) kinda purple!

I'll post some photos for you here but the colour really doesn't show..I'm a lovely shade of violet really I am!
I'm flaring now, I'm sure of it. All the joint areas are suffering a bit, like insides of my elbows and my wrists are particularly sore, but I'm..ready for it...2 weeks steroid free! and 75 days topical  steroid free. I'm also well into MW now too, I can't remember how far, i think 3 weeks or a month?
Oh and I've got a bit of sexy elephant skin going on on my hands now too...here's the photos

Anyway even though it looks and feels bad today I know this is a cycle and I trust the process so I'm keeping a sense of humour and positivity about me.

How's everyone doing?
S x

"Hypochondriac"

Ok so just checked the post and I have a letter from yesterday that was a copy of one my derm has sent to my gp. Now, luckily I'm the sort of person who laughs about things rather than cries about them as this is one of the sentences in the letter:

"Sarah has severe atopic chronic eczema that requires the use of steroids, possibly indefinitely. However Sarah refuses to admit this and wil not use steroids. Sarah actively refuses treatment which leads me to believe there may be some form of hypochondria involved"

HA! I'm literally all out of words. Sometimes I think my derm just likes to be a dick on purpose 😡

Anyway, I'm off to enjoy what's left of my weekend, hope you all do the same

S x

8 days...

Pred free! 69 days topical steroid free (that is crazy)

So, skin update.. I think I'm flaring a bit. My daily salt baths have started to sting :( honestly when I stopped the pred I had about 5 or 6 days where I didn't rebound at all but I think maybe I'm rebounding now. Or it could just be a normal tsw flare, it's so hard to say! I upped my dose of ciclo when I last went to see my derm anyway so I'm hoping i'll see the results of that soon, unless I've already seen them... Oh it's all so complicated! I'm just going to roll with it; grit my teeth through the worst parts and look forward to the best parts 

Anyway I'm looking forward to the next couple of weeks, lots of things to look forward to and to take my mind off things, I've been feeling really self conscious lately which really isn't like me :/ hmm

Hope everyone is doing well 

s x

Pred free, baby!

Here's me enjoying an oriental dress that i found in a vintage shop, it's absolutely gorgeous but i have nowhere to wear it yet so i'm just wearing it in my bedroom (not a forest, looks can be deceiving!!)

anyway the reason i post this pic is because my skin hasn't really changed since the last photo update so rather than bore you with pictures of my limbs i thought i'd post one of my face for a change!

Today is the day to celebrate anyway, I took my last 2.5mg dose of prednisalone yesterday,FINALLY! it feels like i've been tapering since forever so i'm really happy that i can FINALLY say I'm steroid free.

So my TSW OFFICIALLY STARTS HERE although I'm already 8 weeks off topicals (yay)

My skin is really really good at the moment, thanks to a fab combination of ciclosporine and no moisturiser, let's hope nothing changes!
Happy healing lovebugs x

Getting drier (photo update)

Here's a little photo update... First picture is the back of my neck which is really itchy but not that irritating at the minute, it just looks kinda weird. Second are my sexy elephant knees. And third is how I've woke up today with a scaly chin >.<

It's only 8.23am and already 4 people have suggested to me that I moisturise... Duh! But I'm refraining, think I'm going to make up that I'm allergic to moistuiriser or something. Anyway other than that I'm all good! 

S x

A little lesson

Just a short post...
I learned a little lesson today. Woke up this morning with a dry flaky and itchy face and i had to go out and face the world so i thought "why not put a little moisturiser on my face underneath my make up?" 
as soon as i applied the moisturiser the dryness disappeared and my face looked smooth...
fast forward a few hours and my face is SO red and itchy >:(

I definitely won't be moisturising anywhere else for a while!

EDIT: thought i'd add a little photo update of how much better i'm doing since I stopped moisturising...

First photo was taken today, 9 days after I last moisturised, second photo you might recognise from a couple of posts ago. Obviously it's not perfect, there's some faint scratch marks where I've gone a bit crazy in the middle of the night and obviously it's a little dry but the colour difference is the most noticeable thing, I'm not really that red at all!

How is everyone doing? 
S x

When it doesn't feel right, go left

How amazing is is that I came across this image on Instagram the day I had a blazing argument with yet another derm...

So yesterday I went to get a check up, because I'm on ciclo I have to go get my bloods taken and blood pressure checked every 3 weeks. My skin isn't in good shape right now, it's been worse but it's definitely also been better. So my derm asks me have I been using my steroid cream? (He prescribed me elocon a few weeks ago but I never picked up the prescription) I considered lying but to be honest I was just in one of those moods where I didn't feel like going along with his bullshit. So I told him that no, I hadn't. I was expecting a negative response but nothing even close to what I got. He basically told me I was stupid and naive, did I think I knew more than a medical professional? I answered that I knew my body more, it's my body, and I told him that, unlike him, I aren't encouraged or sponsored by pharmaceutical companies. It all got pretty heated and resulted in me storming out, albeit it with a prescription for more ciclo and atarax (thank god)

So, like the title says, this post is about going left when you feel like it's not right. It's so so hard to not listen to your doctor, your derm, your mum, your friends and to listen to your body instead. But I know this is right. And I can't wait to book an appointment with that derm when I'm healed, i'll be sure to take a photo of his face and post it here!

Hope you're all doing well and you have a better derm than I do

Love, S x