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Tuesday, 28 October 2014

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

Thursday, 9 October 2014

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


Monday, 25 August 2014

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

Thursday, 7 August 2014

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

Monday, 28 July 2014

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

Saturday, 19 July 2014

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!


Thursday, 17 July 2014

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






Wednesday, 16 July 2014

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!

Monday, 2 June 2014

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

Monday, 19 May 2014

Flaring....?

I think I may be flaring...
Lots itchier than normal, skin is really dry again and sore to touch, a few lint wounds and a bit of oozing too. not fun :(

I hate flaring for a few reasons..

1) It makes me wonder if the ciclo is even working, and if isn't then i'm putting my body at risk of other things such as skin cancer and liver disease/kidney problems for no reason.
2) If the ciclo is working and these are just mini flares that are being dampened by ciclo...how much would I be sufferng if I weren't on ciclo?! and how badly will I suffer when I have to reduce and eventually stop ciclo? I actually skipped a dose by mistake a few days ago so maybe this is the result, but i thought it took a while for the ciclo to actually affect the system so I'm not sure.
3) I still have that classic eczema mentality that somehow a flare or bad skin is my fault. "If i could just keep my nails short", "If i could just stop scratching" etc etc etc. For so many years doctors have drummed it into me "YOU MUST NOT SCRATCH" that in my head scratching is the problem. In my head I don't actually even HAVE an underlying problem i just need to STOP SCRATCHING. This was the best thing about starting TSW for me, I started to realise that there are some things that are out of control, my skin will flare and break just the same if I scratch or if i dont - within reason! obviously scratching can damage the skin and slow down healing but whether I scratch or not I still have tsw, it's out of my control. That's a really liberating feeling

Anyway hopefully this will pass. I have a derm appointment on 1st June and I'm terrified he will want to reduce my ciclo :( I'm enjoying having quite good skin and I don't want that to change before my holiday on 1st July!!


Hope everyone is well

S x

Saturday, 17 May 2014

Hello hair!

Hi all!
Just a quick one and a warning that if I bump into you on the street, I am not actually currently transitioning into the American werewolf in London (or the British werewolf in...Britain), it is in fact apparently just a side effect from the ciclosporine (I hope, maybe stay away from me during future full moons, just in case)

I actually had to TRIM my arm hair today, with SCISSORS! I also have lovely attractive long blonde furry sideburns 8) maybe I'll start a trend? The hair on my head is thicker too but not in a good way, it's really wiry and uncontrollable. I've asked around though and apparently this is common & it should settle down in a few months.


If it doesn't maybe I'll just start auditioning for a walk-on part in the next Twighlight film or something.


Here's a delightful photo of my caterpillar arm pre-trim




S x

Sunday, 11 May 2014

Thinking about addiction...

So first of all, I'm aware of how neglectful I've been with this blog, I hope I can be forgiven...
I suppose it's because things are really going okay for me at the minute, it's nice not to have to dwell on my skin all the time. 

But, I did want to post about something that's been on my mind for a couple of weeks.


Being a member of ITSAN and also a few of the facebook groups, I've heard a lot about people's stories, and most people have (sadly) been using steroids for a long long time, most for decades. I've also been using steroids for decades - since I was a baby. But, something I've been thinking about that I don't think is discussed much...when do you think you became addicted?


I suppose for some this might not be easy to figure out but I was thinking the other day that I spent a Summer in the US in 2012 and didn't take any of my topical steroid creams with me and didn't have too much problem with my skin. I was still using emollient but no steroids at all.


Then, when I got back I moved house and got a new GP, who gave me a repeat prescription for fucibet and eumovate.. Then I remember my skin was great in Summer 2013, and although I was using steroids daily I was applying quite sparingly. My problems really started in around October 2013 when I was using steroids twice daily and noticing no improvement, skin was CONSTANTLY dry and sore, and I would cry when I showered because the water hurt my skin. I kept thinking that this didn't feel like normal eczema, I remember thinking I was allergic to my emollients and trying lots of different types to get my skin to heal but to no avail. I was prescribed betnovate in November 2013 and used for a month before finding ITSAN and that's when my TSW journey began.


So, by this calculation, maybe I have only been addicted to topical steroids for max. 2 years? It's hard to say for sure but I only really noticed a change in my skin in October..maybe I have only been addicted for a few months? This would make sense to me because although my initial withdrawal was painful, I've noticed a significant improvement quite quickly. Obviously I am still on ciclo and so I'm hesitant to make any assumptions, it could be when I reduce that I notice a massive decline and all my calculations are wrong! I spoke about this with one of my tsw friends (Hi Jo!) who does not use immunos. She thinks she has probably been addicted for around 2 years too and is now only experiencing mini-flares,her skin is much better than when she was using steroids.


Anyway I have a derm appointment on the 2nd of July and I'm going to bring up reducing the ciclo. I think I'll have a hard time convincing him because he wants to see my skin super-clear before he thinks that the ciclo is working for me because, obviously, he doesn't believe in TSW! But hopefuly I can convince him and work my way towards becoming properly drug-free!


How is everyone doing? I'm 4 months off TS now, counting down the days 'til 6 months TS free! x


Wednesday, 30 April 2014

Look what I just found...

...in an old bag of mine 

At least I have something I can burn if I ever get cold... ;)

Straight in the bin for you mr repeat prescription!

Friday, 18 April 2014

DAY 99

Tomorrow will be day 100 but it's my housemate's birthday and i don't plan on coming on here to blog so i'll just celebrate 99 days the same way i would 100 :)

Things are going okay, i just got out of possibly one of my worst flares since i started, it was horrible but it's passing now and i'm just flakey and scaly again which i can deal with.


i keep meaning to come on here and do a much-procrastinated post about MW but i never get around to it. I'm definitely going to write a detailed post this week 


Lots of bank holiday & easter love!

S x

Thursday, 10 April 2014

Happy 3 months to me!

Today marks my 3rd month off topical steroids! Big milestone :)
I'm sure some of you who follow my progress will know that when I quit TS I was actually hospitalised and put on a short course of oral steroids which I had to taper down, so although this is a big milestone I'm actually only 1 month steroid free but I'm still proud I've reached this milestone!
When I first started this journey I was reading the blogs of people who were so far into their progress and never imagined I would have the strength to make it to those markers, but the time has gone so much faster than I imagined and I'm optimistic for the future.

Just a short one for today really, I want to do a post soon about MW, there's always a lot of questions surrounding it and I'd like to have a blog post of my own that I can refer to when I'm asked questions. I'll do a bit of an update on where my skin is at then too.

Hope everyone is doing well
S x

Monday, 31 March 2014

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









Wednesday, 26 March 2014

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

Saturday, 22 March 2014

"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

Thursday, 20 March 2014

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

Wednesday, 12 March 2014

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

Monday, 10 March 2014

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

Saturday, 8 March 2014

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

Tuesday, 4 March 2014

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

Thursday, 27 February 2014

Last week on prednisalone

(6 weeks TS free...)

Here are some photo updates, I warned you I was flaring!! 

Ouch ouch! Hopefully start to see some improvement now that I've ditched the itchy 50-50!
Sorry to offend all your lovely eyes ;)
S x

Wednesday, 26 February 2014

Radiate Positive Vibes

Sorry about the miserable, stressed out last post, I promise to be more positive in this one...



So my skin is definitely not enjoying the combination of being off antibiotics and reducing pred. It's flaring like crazy, but mainly just my upper half, my legs are sort of ok so I can be grateful for that at least! The only positive is that by this time next week I will finally have finished reducing the oral sterods meaning my journey can properly begin. I know this means I'm going to be suffering a lot but after so long of reading about how far into withdrawal people are getting already and how strong and brave they are being I'm really just ready to get started again. I feel like I'm in so much more of a better place than I was when I started withdrawals last time and I'm ready for whatever's thrown at me.

This week I'm starting something new that I know is VERY controversial (no arguing in my comments section please! ;)) but I've decided to go without moisturiser on my body and see how I get on. I made this decision when I took a lovely long oatmeal bath on Tuesday which made me feel so soothed and relaxed, then covered myself in 50/50 (white soft paraffin and petroleum) and proceeded to itch and burn myself into a frenzy resulting in me being bright red like a tomato and covered in hives. No fun. This moisturiser has usually helped me lots, it's very hydrating, but I think at the minute my skin just can't tolerate it. So, after my shower today I simply jumped out and put my pjs on without putting any moisturiser on -well "jumped out" makes it sound quite relaxed and easy, I was actualy wincing in pain like I always am after the shower, my housemates have learned not to be alarmed if they hear screams of pain emitting from the bathroom ;) 
Anyway I actually alraedy feel much better for it, my skin feels clean and calm and not itchy at all so we'll see how I get on 



Radiate positive vibes and happy healing everyone.
Love, S x


Thursday, 20 February 2014

Fed up

Writing this from my desk because I'm miserable and distracted at work. So I already mentioned that I'm flaring but instead of improving with daily DSS and ACV baths it just seems to be getting worse :( it's nowhere near as bad as it was before I went into hospital but I'm just so angry and frustrated that my skin should still be this bad when I'm still on prednisalone and ciclosporin :( 
Even my face/cheeks are rashy and swollen which is something new. No amount of antihistamines will make the swelling go down so I look like I've been in a fight currently. I'm just feeling down and fed up because I haven't even started my journey properly this time around yet and I'm already sick and tired of feeling uncomfortable in my own skin 

Moan moan moan

Monday, 17 February 2014

Flaring

Little update about where I'm at right now

So I finished my second course of antibiotics and, as I predicted, I'm flaring again, but nowhere near as bad as in week 1 of withdrawal as I'm still on 20mg of pred a day (still reducing by 5mg every 5 days)
A few people have told me that flaring is normal while reducing pred and also that antibiotics contain anti inflammatory properties so it's normal to flare when coming off those too, which is all good to hear, I was really worried about my flare happening while I'm still on oral steroids, made me scared of what it will be like when I stop completely. And also the fact that I'm on ciclo, i thought this would prevent flares from happening, but then I suppose it is nowhere near how it could be so I'm grateful for that.

As for myself I'm still doing pretty well, nowhere near emotionally/physically drained as I was when I first quit everything, so the meds must be helping. If my skin stays this way throughout the whole of my withdrawal I'll be pretty happy (i know this is unlikely!), it's far from perfect but it's totally bearable.

I bought some dead sea bath salts last week as well as some apple cider vinegar which lots fellow tswers have been raving about and when I took a bath when I first flared I noticed I was a LOT less red and itchy afterwards, just more dry which again, I can cope with.

So overall I'd say I'm about a 7/10 today, which is a definite improvement from the -1 i felt when I first withdrew.

I'd be interested to know people's stories regarding antibiotics/oral steroids/immunosuppresants and their flare patterns, maybe I can work out how long I can expect to flare, although I know everybody is different.

Hope everyone is doing well and staying positive, I know I say it all the time but I'm really grateful for all the love and support everyone provides me and other sufferers with!

All the love in the world
S x

Monday, 3 February 2014

Rental Skin

First of all I want to say sorry for not posting, I didn't realise how long it had been.

I'm just enjoying what I've taken to calling my "rental skin"...I'm still on oral steroids, prednisalone though i'm reducing quite quickly so I shouldn't be for much longer. I'm still taking the cyclosporine too, obviously it's sort of hard to tell whether it's working or not because I'm still on the pred, I suppose the real test will come when I come off it altogether.
So I'll give you a little skin update from the last couple of weeks...

I came out of hospital and the pred healed everything up, I was totally smooth-skinned for the first time in my entire life! It was amazing. That lasted about a week and then I started to notice some symptoms again. My chest and neck were burning hot and itchy and bright bright red. I was really upset, I thought I couldnt possibly be getting TSW symptoms so early while I was still on the pred, but then I realised that what had changed was I had finished my antibiotics to treat the staph infection I had while in hospital. My skin smelled really metalic and horrible when I itched it like it had when I was admitted. So I went back to the doctors straight away, while trying not to get upset that my amazing rental skin had only lasted a week. Anyway, he's prescribed me some more clarithomycin antibiotics to hopefully blast the last of the staph infection away. I've been reading around though and I know that lots of people who have been through TSW find that they stop to work after a while to treat the staph so I'm really wary about when I finish this course. I seem to have responded well to the clarithomycin anyway, I'm not red or burning anymore, just a bit dry again which I'm hoping will subside...

I've had a couple of funny symptoms which I didn't expect, I think probably from the cyclo maybe. I get REALLY cold hands and feet in the evenings and when they finally warm up it takes them a long time so they feel stingy and burny for a while which is weird. But I got my BP checked the other day and it's all normal so that's good. I dunno, maybe just one of those things!

So anyway there we are! Emotionally things are so much better, I can go to work and out with friends without letting my skin hold me back which is amazing. But it's always in the  back of my mind that I don't want things to change when I finish the pred... it's hard to enjoy it, which is why I'm just making the most of my "rental skin" while I can!

Hope everyone's journey is going well, always thinking of you all 
S x

Wednesday, 22 January 2014

Twitter

I'm still feeling really anxious about the oral steroids that I'm on but want to say a massive thank you to everyone who has shown their support even though I've had a bit of a relapse. I really can't believe how much strength and inspiration there is within the community, you're all amazing!


Since I'm on the steroids I'm hoping I'll have an easier ride for a couple of months until I have to descend back into TSW hell so I'm going to try to stop obsessing over my skin and enjoy it. Which means I *may* not post as much as I have been, so I thought I'd post a link to my twitter here, sometimes I like to rant on there too.


Love,
S x


Tuesday, 21 January 2014

I really didn't want to have to write this post...

I was almost tempted to just disappear off the radar but I figured I owe it to those of you who have supported me this past week!

So on Sunday I collapsed and was rushed to hospital. I was given morphine and sedatives because I was in so much pain with my skin and was pretty hysterical at this point. When I came round I was given a concoction of tablets but I was still pretty out of it and not really listening to what was said, just swallowed it all down desperate to feel better.

What I actually had was an antibiotic, an antihistamine and, yep, you guessed it, some oral steroids.

Obviously I'm absolutely devastated about this, I spoke with a dermatologist and he was really understanding about TSA/TSW, he said he definitely agreed that my skin problem was directly caused by me coming off of my Betnovate oiintment.

So, for now, I am on a dose of oral steroids which I will taper down quite quickly, and cyclosporine, an immunosuppressant.
I'm really sad I wasted those 8 days off topical steroids, they were really hard and I'm disappointed to think they were for nothing but... they have made me realise that Red skin syndrome/topical steroid addiction is very very real.

I'm very realistic, I know that at some point once I'm finished with oral steroids and cyclosporine that I'm going to have to go through TSW again, but right now that's just not something I can think about. I was a mess by Sunday, I hadn't washed or eaten properly and I just wasn't coping. I don't think I am really emotionally ready for the long, hard journey that is topical steroid withdrawal.

As for now, as you would expect, my skin is clearing up so well, it's hard to contemplate that something that makes my skin feel so good is so bad long term. 

But yes, I really don't want to disappoint or dissuade anyone, I wish I was strong enough to come off my steroids but realistically I'm not at a stage in my life when I can.

I'm going to keep this blog open because I know I will have to go through TSW at some point and I hope you'll all be here to support me in the future when I do.

Love,
Sarah x

Friday, 17 January 2014

1 week Topical Steroid FREE

Yep, only 1 week, I bet to some of you that seems like nothing and I know it's a tiny step in my big long scary journey but I'm proud of it.
I think of it this way:
Those 7 days I went through hell? Those are 7 days of healing. 7 days to bring me closer to healthy, steroid-free, (and hopefully eczema-free) skin. How exciting is that?!
Yesterday I received a really helpful and inspirational comment from a fellow blogger, Tracey (go read Tracey's topical steroid withdrawal blog!) She told me to remember that this is my CURE. All those years I cried about my skin and wished for a cure? Well here it is! I just have to find the strength to carry on through this difficult journey and keep my spirits high.

It's not always easy, today was really difficult, I'm just starting training in my new job and it's a lot of sitting around doing nothing which means a lot of time to sit concentrating on just how much my skin hurts! And tonight I have to work a shift at my OLD place of work, 16 hours work + tight itchy rashy skin = :( 
BUT (I'm making a serious commitment to myself to always include a positive in my posts!) tomorrow is Saturday and I get to sit in an Oatmeal bath all day long. Ha no but seriously tomorrow and Sunday are all mine, but I'm going to try to get some exercise to get those lymphs flowing and then my mum is coming to look after me on Sunday which I'm really excited about. Sometimes we all just need a hug from our mum don't we?

1 week down, LORD knows how many to go!
Staying strong.
S x

Thursday, 16 January 2014

There is such a thing as heaven...

...and it exists in an oatmeal bath.
oh my LORD I have never experienced anything so soothing in all my life, I can't believe it's taken me til now to try one.

So I'm in day 6 and I can't believe how bad my skin is...but I really can't be bothered to talk about that today. We all know how hard it is so I want to talk about some of the positive about my day instead :)

1. My new work friends really are lovely and so understanding of my TSW. They're happy for me to have a moan all day long and they understand when I look a bit down and offer me support. I've only known these girls less than a week so I really am so so grateful.

2. I went shopping after work and bought some new pjs and new bedding...NEVER underestimate the powers of fresh bedding. Even though I know tomorrow all my lovely new bedding will be covered in my crazy flaky skin it's still nice to experience it until then ;) 

3. OATMEAL BATH!!! Seriously, I'm sure most of you already have but if you haven't, try this NOW. I wanted to stay in that bath forever I was so content. And afterwards even though I feel no less dry or tight I just feel a lot less CALM and happy in the knowledge that there is something I can do to soothe the crazy itching and burning.

4. My housemates are amazing. One just made me an amazingly healthy juice to drink which I did right before I settled down with a gluten and dairy free cherry bakewell and a soya hot chocolate (the things we do for our skin eh!)

5. Tomorrow is friday!

So there we have it, 5 positives to weigh up all the horrible negatives that go through my head daily. I still can't believe I haven't even done a week of this yet! You people who have passed the year mark are so brave and inspirational, I have lots of respect for you and I hope I have the strength to join you.

S x

Wednesday, 15 January 2014

Photos

These photos were taken on DAY 2 of my steroid withdrawal, the skin was just starting to get red and itchy but I don't think the steroids had really worked their way out of my system yet. Still, I don't look great.. Here we go...



 Mainly still patches of eczema on my arm here, not really any major signs of redness/swelling/peeling
Face & chest are very dry, not really justified in the photos! 






Feet & legs totally covered in eczema but again, not really TSWified just yet, no real redness or swelling, just ugly old eczema!

Here's a photo I took today of my upper arm, it's the only one I took I really don't feel up to taking more and its usally dark once I'm home from work. But you can really see the way the withdrawals have started from this photo:
Angry, red, flaky, discoloured skin :( 
It's making me so miserable.

I know it's going to get a lot worse before it gets better and this is the hard part for me. But, my steroid creams are in the bin and I won't be fishing them out. So here's to a long, but worthy journey.

S x